While all caregiving has its commonalities, being a young caregiver definitely has its own unique challenges. Being thrust into a caregiver role at a younger age, when my mom at the age of 57 had a debilitating stroke, I was faced with all the “common” caregiver challenges but at a time in my life when it was least expected and with absolutely no warning. I immediately left my career, my home, my friends to move back home (2,000 miles away) to do everything that was humanly and sometimes inhumanly possible to help my mom. I did this on instinct, and most people will say “well you do what you have to and I would do the same”; but as any caregiver knows this simple isn’t true. Not everyone would do this. And really I don’t think you know what you will do until you are faced with it. I myself had no idea how I would handle a sitation like this until it happened to me. Being a caregiver, especially at a young age, is a huge sacrifice. I don’t regret it, but sometimes I can’t help but feel that I am missing out on some of the best years of my life.
During my 20’s, I mostly focused on my career. I was always a very driven person and while I had one or two serious relationships during that time; I was not ready to “settle down”. In my mind, I felt like that’s what my 30’s would be for. Had I been able to predict the future, I would’ve married my college boyfriend and starting having babies immediately. Ok, maybe not, but the idea of it sure sounds good now (laugh). So, here I am, one year into caregiving and I just started working again (my career had to be redefined too). Frankly- I am struggling just to juggle the two. Meanwhile, my friends and acquaintances are getting married, having babies, buying houses, etc. Sometimes I feel like everyone is moving forward, and I am frozen in time. I barely have time to fit in a pedicure, let alone have the time or focus to build a family of my own. I wonder- if and when- will I have the opportunity to fulfill my own hopes and dreams? As a young caregiver, and in my particular situation- this is my biggest challenge and fear. But while this is the “iceberg” for me, there are many other challenges unique to young caregivers out there. Here are some others that I have experienced:
- The acceptance of a caregiver role at a time in your life, when you just don’t expect it.
- Innocence lost; having to deal with sickness and a world of responsibility so young. And knowing you will never get that back.
- Lack of understanding; while most of my friends have been very supportive, but they have never been caregivers. Their intentions are good, but at the end of the day- they can’t relate and it’s very hard to understand unless you have been through it.
- Support groups: I have been to many. I felt completely out of place. Everyone in the room was generations older than I. While they stared at me with pity- they couldn’t really relate to me either. Hence the online blogs and support forums- I found this a much better outlet for me.
- The loss of a relationship as you knew it. Role reversal. While I watch my friends mom’s support their daughters and enjoy their grandchildren; walking down ailes at weddings, babysitting, etc. Even the typical annoying things- mothers getting overly involved, preaching on how to raise their grandchildren. I will not have that. The nature of my relationship with my mom has changed. I am thankful for our relationship now; but it has been redefined and my mom can no longer be be “a mom” to me.
- Freedom and Time. Time to do what a young person should be doing: having fun, building their career and family, traveling, finding love, going out with friends, etc. And this is where the Freedom plays a huge role. Can I do some of these things as a caregiver- yes and I try hard to fit in the time whenever I can. But no matter what I do, where I am-I no longer have the freedom of being worry free. Once tragedy strikes, and you become a young caregiver- freedom and innocence are hard to get back.
So to all the young caregivers out there- whether you are caring for your spouse/significant other, a sibling, or a parent- You are not Alone.
I just came across your blog today. I’m not as young as you are (46) but I do feel like my life is on hold and at times I am feeling resentment. My father passed away recently and my mom has MS & COPD and is confined to a wheel chair. She requires 24hour care and I am struggling to maintain my life. My husband is living at our house with our large dog that my mom does not like due to his size (bull mastiff) and I’m here. I have seen my granddaughter 3 times since her birth in November. My sister had decided her life is more important and will only help once a month. It is difficult. I wish my dad was still here and we could do this together. He had planned on moving with her to assisted living this year. The room was reserved but a month before in March got sick and died. I know what my dad wanted for my mom and what he planned for but it seems more complicated now.
I love my mom but what you said is so true.. My mom can’t be a mom anymore and hasn’t for many years now. I would say to myself often that I missed my mom and I wanted her back. 😦
I miss teaching, I miss spending time with my husband, dog, stepson, grandbaby and friends.
My dad wanted us to live our lives but I’m not sure what the right thing is now…especially when my mom is grieving too.
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Thank you for addressing all these issues. I am a young caregiver too. I have been helping my mom caring for my grandma for 3 years, and then became the main caregiver for my grandma after my mother passes away last year. It has taken a huge toll on me, the loss of loved one, innocent and freedom loss. Sometime I feel like noone understand and I can’t fit in anywhere. At 26, I have already buried my parents and been caring for grandma, while most of my friends enjoying life. I have come to accept it, force to actually because what else can I do? Sometime I still feel so bitter and sad, I miss the old me. Caregiving is physically and emotionaly and mentally drain. Most days I can deal with it fine, even find pride and joy in doing so, but sometime it just feels like too much.
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Hi Sara,
I’m Christina, thank you so much for your post I too became a caregiver at a young age I was 24 when my mom was diagnosed with cancer and less than a year later she lost her ability to walk so she is bed ridden and wheelchair bound. To make matters worse I’m an only child to a single mother and all of my family lives 10 hours away. There are days when I feel completely helpless and I envy all of my friends who have healthy parents and are out there living their lives. In a month from now I will be 28yrs old and just feel like so much of my life has passed me by and I often feel like my freedom will come at the price of my mother’s life. I just wish this life had chosen someone other than me. Thank you for your post it’s great to know that I’m not alone.
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Hi Sara! My name is Bre and I too have been given the bittersweet opportunity to be a caregiver at a young age. I’m brought to tears by your blog post because reading your words is the first time in the last 2 years that I feel someone has put to words the multitude of thoughts and emotions that come from being in my position. 2 years ago my dad was diagnosed with Stage IV Prostate cancer. I left my career of 3 years and my (now husband) and I decided to get married as soon as we could to ensure my dad would be there. We are now caring for my dad along with a Hospice agency that helps out. I just wanted to write and tell you thank you for sharing your thoughts and for putting words to the myriad of ups and downs that come daily. I also wanted to write and say, I get you. I get those feelings of feeling like everyone else around you is moving on in life… Yes, I am married, but we have decided to put off having children until we walk with my dad entirely through this journey. Because I too know the stress of a hectic day full of caring and no time for yourself.
Blessings for you as you continue to share your story!
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Wow – what a nice thing to read. When I moved home to help with my mom at 24, I was totally alone. I didn’t have any blogs or resources for
my age group in my situation. I felt like you did – like my life was stagnating and everyone else was able to move forward! Thanks for sharing your thoughts. I have written about my experiences at http://www.theunlikelycaregiver.com and am hopeful my writing can help others who are in the same situation.
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Ive been a caregiver for about three years and i had to quit highschool to take care of my mother who is 45 now and im only 20.. she had a stroke during her neck fusion surgery and i feel like im missing out on a whole lot im the only one she really has and i feel like im never gonna get my life together.. She has that guilt trip on me all the time and now that i have no job and if my grandfather passes we will have no where to go and she doesnt even care. I dont know what to do.. I feel like suicide is the only awnser.. Please help . i need some assurance from the hurtful burden…
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@theonlygoodchild
Hang in there! Take solace in the fact that most caregivers have felt this way. Depression is the #1 effect from caregiving. Please email me directly if you want to talk offline- sarabaker33 at msn.com.
Sara (the blog publisher) xo
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Hi everyone, I’m new here.
I’ve thought I can do this! But its getting to me. Since Feb this yr i am the sole caretaker of my husband of a 49yrs. I married young 18. I can’t relate to older folks who lived full and long lives. This came on suddenly and before that was great. Enjoying retirement, friends, family …everthg. need a pen pal…best wishes jlaw
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Thank you for this article. I found it today in the throes of a crying spell, feeling incredibly overwhelmed with my caregiving duties. I was 23 when my dad had a stroke that left him disabled. I’m thankful for the good things but still often feel helpless and stuck. It is hard to see everyone progressing in life and not know how you will ever be able to have time to do the same. Anyway such is life I suppose.
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I’m a 31/m and have been the guardian/POA to my 60 yo father who is fully paralyzed post-stroke in a locked-in state. He’s still fully coherent which is a big plus, but it’s been quite a battle for the last 4 1/2 years. In and out of the hospitals, doctors, laywers, rehab facilities, basically catering to his every need. Already losing my mother to cancer by the time I was 9, I was challanged yet again at 26. I’m a much lighter sleeper nowadays, finding myself waking up in the middle of every night to make sure he’s comfortable and not choking to death. I find myself always planning and thinking about his well-being and future, putting mine at a distant second. But this is what we should do for people we love. Especially if it’s choosing between us caring for them or a nursing home. I’d rather be broke in the streets and suffer every day than to see my father rot away in some nursing home knowing there was something I could do to prevent it. This man sacrificed his life to provide for my brother and I, and I’ll be by his side until the end. My brother is pursuing his dreams, with hopes to travel the world promoting his invention. My dream is have my father walk and talk again. I’m always looking into new technologies and treatments that could potentially help him. I’m making a valid attempt to ween him off dangerous prescription meds that the hospitals and doctors have made him dependent on. My friends and family have always had their opinions and comments about the way I’ve done things, but they don’t really matter to me anymore. They aren’t the ones in the trenches, battling lifelong war of decisions, research, responsibility, and endless obstacles to overcome. 99% of them either still have their parents catering to their every need and/or ZERO responsibility for anyone but themselves. I’ve lost touch with a lot of friends/family, who’ve seemed to drift away since this tragedy had occurred. I get it, some people either feel uncomfortable and/or don’t care to be around our situation for whatever reason they’ve generated in their mind. I wish them well, but I’m going to do the best I can for my dad, who’s 150% dependent on me to live. I’ve never changed a baby’s diaper, but I’ve had to change my father’s. This son has now become the father. I’m damn proud of all that I’ve done. I poured my heart and soul into this cause regardless of outside opinion because it feels right. I would love nothing more than to assist and educate others in predicaments like my own. If anyone needs any help, guidance, or advice please contact me. I WILL help you! I’m an endless encyclopedia of information. More trustworthy than a laywer, more ethical than a doctor. I’ve become a master of my craft. Don’t let the “professionals” advise you how to do things. Ask someone who’s been through more in 4 1/2 years than most will ever experience in their entire lives. Just when you’re about to give up and throw in the towel, feeling alone and distraught, just remember that I GOT YOUR BACK! Be SELFLESS, not SELFISH!
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That is pretty admirable point of view. I am 24, I do not live with my mother who I am care giving for and have been for 6 years. She is in a residential care unit. I must say, I wouldn’t have kept going this far without the help of those extra hands from the care home. I don’t know if there is one around you, but this one also has decent programs for physiotherapy, we call it the gym. She is currently going 3 times a week to strengthen her arms and legs. she is sort of quadriplegic/paraplegic with the ability to feel her legs and everywhere else. She was told in the beginning after her care accident that she’s never move from the shoulders down. She now, 5 years later, can give her youngest son a hug and hold things and pull herself around in her bed.
I know the nurses and care aids can be infuriating, but they can also have helpful with information. and if you can talk to the manager and the head nurse about things first off it would be easier then going though the nurses, as they take shifts and not always remember. If you told them your goals for your father they help you as that’s what the care home does. they cannot do anything without your or his consent legally. I know she would not be this far without her being there, and I wouldn’t have stayed so long without her being there, financially and mentally. I’ve been close to burnout a few times and when you get there, you know. It very hard to recover, especally when you have things to do that mentally you cannot do.
After going this long, My only advice is preserve yourself. Having extra hands can help you when you have no strength left. by the 4th year helping her that’s when It started to wear on me. when I try to do everything myself it can chip away everything that is me and all it leaves is a caregiver. That’s not a stable ground when that is your only identifier. what if something where to happen to your parent, what if they died? I always think back to my own mother care giving for my grandma. after 20 some odd years she still gets depressed on grandma’s birthday. it was hard growing up to someone getting major depression for a month. when i started care giving i vowed to keep a little bit of ‘me’ aside and to nourish it like a small fruiting plant. Self-care is very valuable when you give so much of yourself to your parent. And if you feel all alone, know there are people going though similar expenses. this blog is proof. there is also anonymous ways to find help, like a nurses line (which is 811 where I am) a finger is weak where a hand is strong. deligating what you can to other people help. I do not agree with Nick’s point of view. find a balance of SELFISH and SELFLESS. that’s what makes a well rounded person and a good caregiver.
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I respect where you’re coming from Nicole. However, you really can’t compare your situation to mine. I’m almost certain that the severity of your mother’s disabilities don’t even compare to that of my father’s. You best said it yourself, you’ve seen your mother suffer in depression after caring for your grandmother and you don’t want to turn out that way. While I highly commend your mother for her selfless sacrifice, I cannot say the same for you. You’ve left it in the hands of “professionals”, which isn’t always the best way to get things done. Don’t get me wrong, they should know how to make things better, but that isn’t always the case.
Maybe you didn’t have a great relationship with your mother? Perhaps you’re not capable of handling a lot of responsibility? My father and I are best friends. I cherish the time I spend with him and wouldn’t trade it for anything. I’m a deep thinking mind that likes to research, organize, solve problems and overcome any obstacles in my path. I’ve also been able to find a happy balance, exercising regularly and settling down with a great woman. But I wasn’t always like this, it took a lot of dedication and years of hard work. Most people who take on these tasks and try to find that healthy balance seriously struggle to do so.
For those of you like myself who think it’s in your loved one’s best interest to care for them, I highly commend you for doing so. I can’t speak for everyone but if you’re mentally tough, intelligent, focused, balanced, loving, organized, and have some serious attention to detail, you can help others and still live a fulfilling life. For the latter, put your loved ones in a nursing home or similar situation. More times than not they’ll be neglected and not given the attention or the care they deserve. Especially if they are unable to move or speak, they will suffer even more. You have to realize that unless you have personalized one on one care (which is 99% of the time unaffordable), the majority of facilities you’ll find are understaffed and underpaid, hence the care will be of low quality as well. Also, these people don’t love your family thus the level of care and attentiveness to your loved one will be exponentially lower than what you could provide. Most people are getting paid peanuts that work at these places and the majority of kids today don’t mind throwing their parents “in the garbage” a.k.a. nursing home/assisted living facility if it makes their lives easier. Glad to know you’re mom is doing well Nicole, she’s a strong woman. You could learn a lot from her.
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oops that was wrong, I’ve been helping my mum for 5 years. Still a long time. I hope you have time, even if its a little to time to care of yourself. like spices, a little goes a long way.
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Hi Nick,
We are forgetting little matter of finances.
Financially, I not able to get my own place, let alone care for someone in said place. I was in my early 20’s living at a friend’s place as I had no family in close range enough for me to live and help my mum in the evenings. I’m sure a lot of people, young and old, can feel the tension when they have to make the decision to put their loved ones in they, how you say it, ““in the garbage” a.k.a. nursing home/assisted living facility” I’m so happy for you that you can financially take care of your father all these years. I can imagine with all that special lift and sling equipment, adult diapers, medical equipment (like pads,catheters, etc) and sometimes a special liquid food diet that it could be hard for you top keep up with the demand.
Yes, you are right, I can’t compare your situation to mine. Every caregiver and loved ones journey is different and unique but i can say that looking down at those who have no choice but to put their loved one in a nursing home is insulting and degrading. Put yourself in those shoes and imagine how it feels. it was the only choice. Yes, nursing homes are not the best place to live, but if you have at least one person to fight for your right for comfort and other needs, you can control to some degree how they are treated and cared for. it helps when that one person comes regularly. Also who are you to say if i had great relationship with my mother or not. I’m obviously still with her, helping her along her healing journey and we get along great.
The difference of my mother and grandmother are vastly different. My grandmother could walk, and mainly had addictive issues. years later my mother had a accident and was quadriplegic with feeling that thankfully helped strength grow in the arms. Big difference.
It doesn’t matter how mentally tough, intelligent, focused, balanced, loving, organized you are. if you cannot financially take care of them with a place big enough to hold said equipment and supplies. you often have no choice then to send them to somewhere else. it’s hard on both parties. But in these dark moments I like to look at the positives in life. Sure its hard to see them there but not even 100 years ago they would not have survived long. they would not have policies in which to keep the nurses and care aides doing their job. Motorized wheelchairs and special padded or air beds wouldn’t have existed. Much of the medical supplies we have today would not have existed. I’m glad I live in this day and age where they do not use leeches to draw blood. And I’m glad most of all that I get to witness the healing and strength building of my dear mum for the 5 years of her life (plus more to come) she may not otherwise would have.
We and most caregivers have that in common. The gratefulness of being able to cherish the extra time you have with your loved one that you may not otherwise would have.
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@Nick. I am the publisher of this blog and in all my years of doing this and hundreds of comments later- your comment to Nicole is by far the most judgemental I have come across. Deciding on whether to put your loved one in a facility or stay at home is a personal decision and one that every caregiver has the right to make. There are so so many factors including how severe the illness is, finances, support, and on and on. That choice does not in any way make someone less of a caregiver and point blank- you have no right to judge. There is no right or wrong. I personally have done both. I cared for my mother at home for several years until it become impossible for me to continue. For one, I had to go back to work and had to care for my own children. And two, she had become a danger to herself and others and needed 24/7 care. I absolutely do not consider myself any less of a caregiver for doing so. She is in a great place surrounded by wonderful support and social stimulation. Both she and I are better with the new situation and our relationship has greatly improved as well. I really hope that you can find some peace in your caregiver role and be supportive of other caregivers.
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Exactly how I feel. I’ve been talking care of my mom who is legally blind and now on dialysis for four years now by myself. All people say is “God is going to bless you” but no real help and I’m twenty- three trying to finish school. Paying rent and food It’s really hard but I’ll push through.
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Thank you for sharing!!! You are not alone either. I’ve gone through a lot of those same things that you mentioned. Nothing can really prepare you for that. It’s hard to give up those things but you love that person so much that you’ll do anything for them. Take care!
Colbie
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Hi Sara,
I hope your mom feels better now or perhaps you are better adjusted to it by now. While i was reading your post i was having tears in my eyes. Every word of it rings true in my case. While i will never say i will go stop caring about my mom, i sure wish somethings never happen. I have recently become my mom’s caregiver too and that too all of a sudden. One day i was career drivern free spirit who was only bothered to do better in her career even better than most guys and suddenly career is the last thing i have my mind on right now and cant even leave it as i have to support my mom financially as well. I feel so overwhelmed at times and in India we don’t even have so many support groups. Doing this as only child is even scary. I understand the pain you went through and do not wish this pain even on to my worst enemy.
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I know how it is. Family always seem “too busy” to help out or visit. I feel like telling them “you say you’ll always be there for me but not my mom? What kind of family are you?”
This blog is amazingly reassuring that you aren’t the only one out there who is a young caregiver although it feels very lonely as most of the time as most, if not all, the people in your friends and family group hasn’t a clue on how that feels. It’s hard to talk about it with others if they can’t relate.
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Hello,
Thank you for creating such an inspiring blog. My journey in caregiving began when I was about 23-24. My grandmother, the person who raised me from birth had a stroke. We had a fight months before and I left home barely tasting freedom and independence. I didn’t even finish technical school. When it suddenly seemed life was opening up, it closed. The day the stroke happened I was there and we ended up in a mild car accident. Talk about unexpected…gawd. My intuition is never wrong and I was warned before hand. When it came to caring for her I never looked back. It is challenging, frustrating, and depressing at times. I have to remain cheerful and resilient for myself and others. I don’t like to admit failure. My grandmother has changed gradually. Our roles have changed and while I was never wild; this is suffocating.
Family helps somewhat, but most of the upkeep lands on me. Everybody is too busy or involved in their own lives to care. It happens. Even now my freedom is very limited. I’m still struggling to figure out myself and my life. I mean my grandmother has worked her way up from extreme memory loss and loss of movement to just being in a wheelchair. It’s been a damn hard and enlightening 4 and a half years.
With peers my age there is some alienation. They don’t understand really most of the time. They’re knee deep in relationships, parties, and just life. I don’t have time or the energy for a partner or excessive hanging out. It’s nice when I can mingle, but there’s gaps. Even though I know better, I still feel like I’m missing out.
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My name is Sara, I’m 22 but have been talking care of my mother for years. At one point I had both of my parents in the hospital at 14. I feel so rarely understood and I’m amazed by your experience. Thanks.
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I am 23 and caregiving for my mother too. She has as long term illness and wheelchair bound and I have been help caring for her for 4 years now. She was abandoned by the family and I believe just because she can’t help out with dinners and stuff doesn’t mean she should be abandoned. She’s a wonderful woman with so much strength but its hard seeing her suffer but I try to help when i can. After a long time helping her almost every night for 5-7 hours while trying to juggle work and school I am getting overwhelmed and burning out. If anyone wants someone to chat to share experiences my e-mail is tiger_ca_3@hotmail.com. I am the only young caregiver that i know of out of my friends and family, So I often feel alone and on my own. Just KNOWING there is a blog for young caregivers gives me hope and a sense of belonging, something i don’t often feel in this subject.
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I am so thankful I found this blog. I’ve just turned 23 in May and I am a new caregiver. My wife and I have only been married for six months. On March 18th of this year she had a tumor removed from her midbrain and what was supposed to be a 5 hour 3 day hospital stay turned into a 13 hour, month long ICU stay. After our stay at the hospital we went to an inpatient rehab facility for 4 weeks. I’ve had to quit my job as a cosmetologist and am now a full time caregiver. I often find myself lonely. I miss my wife even when she is sitting right beside me. She’s getting better every day but I still get discouraged. How do you cope with the loneliness of suddenly becoming a caregiver to your spouse? How do you cope with wanting two minutes for yourself to take a relaxing bath and feeling guilty immediately or feeling guilty about buying yourself a 5 dollar tshirt even if you need it? When do the loneliness and the guilt go away?
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I’m 23 too. My mother, who I take care of, used to dress up all the time. She’s gained some weight since she’s lived in a wheelchair. she always tells me how she wishes she could go back and enjoy dressing up more and being the skinny mini she’s always wanted to be. I tend to wear basic clothes around her. I understand the feeling of not wanted to rub in the fact you can do these things she can’t. I only wear nice clothes and dresses when I’m not looking after her.
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Hello, do you have more on your blog for young caregivers?
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Right on!
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I am praying this message finds u in great spirits! I would love to connect with u and share my story with u! Please email me if this finds u!
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Hello everyone. I am 28 years old and full time caregiver for my 59 year old mother.
A year ago my mother suffered a massive hemorrhagic stroke in her brainstem. It was caused by high blood pressure due to alcoholism that had been coerced into by her abusive alcoholic husband. She is now disabled and has severe tremors in her left hand, and her entire right side is paralyzed. She needs to be fed, bathed, wiped, changed, and can do none of those things without assistance.
Her husband has insisted that he is the victim throughout the entire ordeal, and has verbally and emotionally abused my mother to the point that Adult Protective Services deemed it necessary to remove her from the household. Our choices were either a nursing care facility or another family member, and I am the only one that stepped up to the plate.
I am a full time engineering student in my last year of studies on top of my caregiving duties. My entire life has crumbled around this. I long for intimacy and companionship but it is simply impossible to manage, and, as Sara points out, no one really understands.
I live with my little sister and my mother and they look to me or strength, and I have to provide it even when I have none even for myself. I love her very much but I just don’t see how my life will ever improve, as she will continue to live for a long time. I managed to take a day off to celebrate New Years, and even met a girl I like that night, but without any time to invest things are just fizzling out.
I’ve definitely grown from the experience and things will never be the same even if she somehow recovers.
I’d love to chat with any and all of you. I’ll gladly listen to others that need someone in a similar situation to talk to.
Thanks everyone.
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Caring for my 80-year old widower father at age 34, I understand where folks are coming from — I get mistaken for his grandson by many doctors’ offices. My mother, uncles, and grandparents are all dead, so he’s the last of my family’s older generations. With my brothers all moving off to marry and get high-end jobs, that left me to move back to my hometown when my mother died (where there’s no work in my field, museum object management, so I’m still working at practically minimum wage in multiple other jobs part-time a decade later) as the expendable single guy, even if I’m the son he always argued with — and still yells at me daily to this day (versus sweet-talking the prodigals).
What makes it harder is that I actually suffer from fibromyalgia myself, but have no caretaker or aid of my own (my friends and other family have grown fed up of my having to cancel plans out of pain or fatigue, so I channel what little energy I have into my father). My father doesn’t understand or quite believe in the syndrome, though, and keeps wanting me to “stop thinking about it,” getting angry when I try to explain how that doesn’t work. Nevertheless, I swore to my mother on her deathbed to take care of him, regardless of my health, my career, or my inability to meet anyone or make a life for myself like this…
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@ Brian,
I just discovered this blog. I am facing a perfect storm of financial problems:
My mother is 68 y/o. She has dementia and b/c she had lupus when she was younger, she has no more cartilage left in her knees. She fell down earlier this year and now her knee is so messed up she can’t walk. I went to grad school out of state for 4 years, and my mom hid her symptoms of dementia. On top of that, we both inherited her father’s massive brownstone townhouse. The mortgage is 325K! (Mom’s breakdown happened when a lawyer screwed her out of much of the mortgage money). My original plan after grad school was to find work out of state while working on my license. I had to return home to the horrible job market in NYC and was unemployed for 9 months. The bills started to mount into a mountain. I fell behind on her condo’s mortgage and the brownstone’s mortgage! On top of that, I have massive student loans (WHICH I CAN’T DEFER ANYMORE). My current job pays nowhere the salary I need. It breaks my heart that I have to turn down recruiters who are offering me sweet jobs, but b/c they are practically on the other side of the country, I have to turn them down. When I came home last year, my mom was a mess: she could walk but she refused to wash/bathe herself. She was emaciated. She became weak. I emptied her savings account to help pay for a private aide (as her insurance and medicare doesn’t cover much at all). We are now destitute and I am trying to prevent 2 foreclosures! I feel lost, scared, and helpless. I am asking for financial help from family but many are broke too. I don’t want to become homeless. I may have to sell the brownstone but b/c my mom negelected it after her breakdown, I won’t get market value. A couple months ago, I stopped eating. I am overwhelmed and just can’t think about the future b/c it looks so bleak.
Many nights, I cry. The aide I hired fed my mom so much food, now she is very heavy, too heavy for me to really lift. I can’t believe this nightmare. My mom didn’t plan her retirement well at all. If I could just turn back the hands of time, I would have never gone back to school.
I am a 34 y/o female. I have no siblings, no husband/boyfriend. The chances of me having a family/career/home of my own is disappearing. I love my Mom, but many times in the last few years, my mom was so rude and nasty to me. I don’t know if it was dementia setting in early, but many times I was so angry at her. Now that she has been diagnosed with dementia, I feel guilty of being mad at her in the past. I can’t change the past but I also can’t see into the future.
God bless all caregivers on this forum!
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i was 14 when i left school to look after my mom, she had cancer, she passed away when i was 18. i missed out on many teenage experiences not to mention i didn’t attend school so trying to home school myself meant my education suffered. i also had 2 siblings both under the age of 3, so it was looking after them too, we didn’t have a lot of money, living off just my dads income so i couldn’t go for tuition, i borrowed text books where i could and failed my grade 12, but i did redo it, my results are dismal, but i wouldn’t have had it any other way 🙂
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I thank you so very kindly for this. I am a 29year old caretaker caring for my dad. I’m also a girl. It’s very hard out here and very different walking in my shoes. I’m a completely different woman now from one year ago. I would love to connect with you and it would be good to relate to someone going through the same thing as me.
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Annamaria, I’m sorry I was having trouble viewing comments and just saw your comment. If you are comfortable, email me at acaregivercares@aol.com with your mailing address. These posts are exerpts from my book that I wrote talking about the real emotions and feelings I was dealing with. It’s not a long book and I think it may help you. I would like to send it to you at no charge to you. Michele
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Great. All I feel lately is anger, frustration and guilt. I never signed up for celibacy for life…my SO is in pain, and I just am constantly taking care of him, and I just want to relax. I remember the relationship we had before…and what we have now, and it is like a death. Only we are still alive. My life is over.
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As my best friend said as she was caring for her dying husband at age 52, “It’s crap, it’s all crap!” I hope you can find some resources in your area.
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Just found this site and I can totally to relate to how you are feeling, at 47 I am the soul caretaker of my now disabled husband. The range of emotions and the physical work can be overwhelming and family has everyexcuse in the book for not helping, except on a rare occassion! Your life is not over although I will admit I often have that feeling….
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Thank you for your testimony it was definitely a help and inspiration. I’m a 22 yr old caregiver for my 55 yr old dad. I’ve been taking care of him pretty much by myself since I was twelve so between 10&11 yrs. Its one of if not the hardest thing I’ve ever done not bc of the things I have to do or the sacrifices I’ve made but the pain and suffering that I see everyday. If I could go back and make the decision again I’d never change it. In my opinion a 55 yr old double leg amputee & air force vet. doesn’t belong in a home, & if he didn’t have me that’s where he’d be. I won’t allow that he’s my hero and the strongest person I know. He has a vascular disease called Bergers disease it restricts blood flow to the extremities until they die its one of the most painful and toll taking diseases I’ve ever encountered but somehow he stays in good spirits and because of that he makes me a better person. He says the one of the only reasons he’s lived so far past his life expectancy (5yrs ago) is me. To anyone who reads this remember, never give up on those who u love and who love you. My father believes once I leave this earth that I will be rewarded for my “great deed” as he calls it I just call it responsibility and life. I hope this helps anyone who might happen to read it, and good luck and God Bless!
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I am VERY PROUD of you, you go LEE!!!!
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The strength and commitment everyone have written about here is very inspiring. As a caregiver, I too share in so many of these experiences… especially finding joy in knowing that “I am not alone.”
My wife had a heart transplant in 2001. I was 34 and vividly remember contemplating how could I possibly go on and take care of our 4 year old son if she died. Praise the Lord she received that heart … but I didn’t know what lay ahead when she lived. It struck me how alone I felt as a young, male caregiver. The transplant support groups, hospitals, and government agencies all assumed my wife was a 65 year old retiree with retiree’s insurance, a free schedule, and children to care and transport them full time. Even the caregiver support groups and books were mostly daughters taking care of elderly parents.
Over the last 12 years my wife has suffered from chronic anxiety, depression, constant GI issues, breast cancer, and today is in end stage liver cancer (a frequent fate for transplant patients). Certainly my career and social life have suffered. The difficult stories of caring for her along the way could fill a book – and I read so many of them in what everyone has written here. To those contemplating your fate ahead, I say with confidence looking back at mine: you definitely will find the way. God chooses us for these special missions and gives us what we need along the way.
– Brian W.
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Brian, I’m sorry for this long drawn out course, working so hard to help keep your wife’s health as well as you could, only for another disease/problem to come along. Make a pact with yourself right now, that when she does pass, you will feel happy for the service you provided as a loving husband and loving caregiver. Do NOT reflect on the times you felt frustration, guilt, shortness on patience. We are not perfect so do not hold yourself to a perfect standard that is unattainable. Feel happy in the quality of life you helped provide, and that you did do the best of our ability to figure your way through this.
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It’s crazy to see how many people are in a similar situation as my little brother and myself. Back in September 2012, my father had a major stroke that left him fully paralyzed and in a “locked-in” state. He’s being supported through a feeding tube and cannot speak. This has been a very stressful year for my brother (23) and myself (28). To make matters even worse, our mother passed away about 17 years ago, at the young age of 39. So it’s ultimately up to me to make sure this whole situation runs smooth. At this point, I’m the backbone of my family. Balancing a full-time job, running a household, and taking care of my terminally ill father has left me mentally and physically exhausted, with little to no support from the rest of my family. My social life has went down the tubes, and anyone I’ve gotten romantically close with over the last year has been scared of my “baggage” so they’ve moved on. Life has sent me on a crazyyyyyy roller coaster ride of ups and downs my entire life. Somehow, I always find the will to adapt to each situation thrown my way and prevail. Each experience I’ve been through has made me stronger and much more knowledgeable. I’m more than willing to share my experience and offer advice to ANYONE in need. My name is Nick and my email is Nderasmo10@gmail.com. Feel free to reach out to me anytime. I’m writing this from Monmouth County, NJ. Soon, I also plan to start a support group to help others in a similar situation as me who need help and have questions. I’m very passionate about helping everyone I can. I wouldn’t wish my hardships on my worst enemies.
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Thank you so much for sharing. I began taking care of my grandmother (Alzheimer’s) a year and a half ago. I’m 26 now. I feel “stuck” often but I know I can’t simply shirk my duties. Reading entries by brave people like you is immensely therapeutic!
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Thank you for this post. I hope things have grown easier since you wrote it. I am struggling with the same situation and I’m reaching out now because I’m burnt out. Just reading the post and comments has helped me cope with feelings of guilt and shame. I am a 31 year old single parent and my mother has lupus. It’s up and down, it will seem like she’s getting better then a hit of some kind. The worst part is her emotional state. She was never strong emotionally but now with the diseases and medications she’s so delicate and dependent despite her greatest efforts at being strong. She still wants to help others and take on other people’s problems and I end up picking up the slack for it all and her denial of how she isn’t taking care of herself. I know she’s struggling but I still feel the weight of my own life and the needs of my child. Financially, emotionally, I feel like I’m taking from my daughter to give to my mom. I feel lost. I have been struggling with so much anger and depression regarding what my life has become. I’m coming back from being stoic and ice cold. I’m starting to feel again and I see that I feel horrible. I am so thankful that I can even say this out loud. I’m tired and I wish I could move on with my life. It’s been 4 years and I feel like its never going to end. The praying and hoping and refusing doubt in spite of the evidence. My faith is questioned. I’m angry with God. I’m overwhelmed and its affecting how I raise my daughter. I want to move and let someone else step in but who? None of her siblings or her mother have offered to step in. I feel like I have to give in to this illness running my life or I have to give up on caring for my mother and let someone else step in when they see she has no one else. Please give me some advice. I need it desperately.
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Dear Liza,
One thing I learned, is often caregiver’s sacrifice their own health for the sake of the person they are caring for. It is out of necessity. Yes, the giving to your Mom at the sake of your daughter is a tough one. You are not a bad person for feeling what you are feeling. When you said “I am so thankful that I can even say this out loud” was a big motivator in me writing my book and this blog. I felt like the scum of society when I would have similar feelings. If you expressed them to other family members they may not get it and judge you. You said that no one else in the family has offered to step in. Let me assure you, NO ONE WILL. When you are the caregiver, you are admired from afar, others think, ‘Wow I could never do that’, ‘She is doing a great job, better than I can.’ You are a great caregiver, and you make it look easy. You and I know that is far from the truth, it is not easy. You are working each day to survive as others go about their ‘normal’ lives. Then the emotional rollercoaster; shame, guilt, fulfillment, satisfaction of a good job, then anger, frustration, guilt because you love them, resentment for losing out on your own life….I’m not sure from what you wrote if your Mom is living with you or not. Here is my suggestion, and please don’t discount it automatically that is will not work, it may not, but if you don’t try something, you won’t get any relief. You know your family best, either call a family meeting, or call each person individually. Write out what you want to say, everything. Whatever you do, DO NOT SAY IT! That will be your draft to vent, to say all the thing you want to say, ‘Why aren’t you helping???’ etc. but will accomplish nothing but hard feelings if you say them. Okay, you are feeling a bit better getting a few things off your chest, now throw that away. Now write what you should say. One tip I learned from my Mom many years ago, it is all in the packaging. If you start off with saying, ‘This is hard on me, my daughter is making sacrifices that other adult family members are not willing to make’ you will not get the desired results. Why? First off, they will think it is all about you and your daughter, not your mother. Should that matter? Nope. Will it matter? Yup. The packaging here has to be all about your Mom. Something along the lines, ‘I am calling because I can no longer give Mom the care she deserves and needs on my own when her Lupus flares up. I am calling to see what help you can provide, because I want to avoid Mom ever having to go to assisted living.’ Be prepared for excuses, don’t allow your anger to stir up, basically repeat what you said. ‘I hear what you are saying, but I’m not sure what to do. I can no longer give Mom the care she deserves…’ One thing my Mom did for me was arrange a lunch for my mother-in-law once a week. When she was immobile, she would stop at Panera Bread and get lunch for her and my MIL. Sometimes she could get another friend to join them. It entertained my MIL and put her in a better frame of mind. When she was better, my mother arranged others to meet them at Panera Bread and she would take my MIL there. My Mom is on a fixed income so I would pay for the lunches secretly. When my sister-in-law noticed what a good mood it put her in, and it meant less calls to her through out the day, I suggested she help pay for the lunches every other week and she readily agreed. If your family members do not want to help, find out the cost of outside help coming in. If you get, ‘I would like to help, but don’t have the time’ then you could say, ‘I found out that a home health care person could come in once a week for the cost of $…, can you contribute towards that?’ I know this is very detailed, but I’m hoping this will get your wheels turning and you can come up with a plan. If you find some family members are willing to help but don’t know what to do, you need suggestions available, ‘Once a month take Mom for the weekend.’ Wow if you had two family members that would do that… Also, this may be the toughest of all, you are going to have to talk to your Mom. With her fragile emotional state you are going to have to be careful to make it about her and not you. ‘Mom, I love that you are so caring and you want to help other people with their problems. For now, I’m noticing it brings you down. I love you and want to help you in the best way I can, but I’m not sure if I can if you continue to take on other people’s problems. I know that will be hard for you, but consider it as a gift to me and your granddaughter. I don’t want to consider assisted living, but it may be an option we have to explore from time to time if you don’t do everything you can to help yourself.’ As far as some of your spiritual problems, I would like to email you some things later in the week that helped me. I hestitate to do it here, because I do not want this to become a religious forum, but a caregiver’s forum. I hope that is okay.
Michele
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Hi, I’m 38 (divorced, no kids) and live at home with my 87year old grandmother. I haven’t worked in 5 years and have my own lifelong issues with anxiety and fear of driving except to pick up groceries and run quick errands. I don’t have close friends and the rest of our family lives in other states so I don’t have anyone to help me. We stay home all day most days, with her watching tv and me using the computer. It’s very isolating and we argue sometimes. I am very worried about her health and my own. I am also worried about my future since I did not attend college and only have a high school diploma. I am glad to find this site. It’s tough to have to decline invitations to fun events because I’m worried about leaving my grandma alone for very long. She doesn’t have dementia, but she has been hospitalized twice in the past year and has congestive heart failure, high blood pressure, and arthritis in her hands and knees. I’ve been through a rollercoaster of emotions and stress in the past year and a half.
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Dear Homebody,
Since you are computer savvy, look for where you live for a Department of Aging. Find out what programs may be available to help you. I’m sorry you have such a big load on you by yourself. The Department of Aging may have programs that can could be helpful to you and to your grandmother. It’s tough loving someone and resenting them at times for how they completely encompass your life. You are not alone!!
Michele
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Hi Sara,
It’s amazing to find someone that is in exactly the same situation, and feels the same. My father was diagnosed with dementia 3 months ago and is still in early stages. I’m only 25 and completely scared of what’s going to happen next. I am the only person that could care for him, but find myself angry and lacking the patience to deal with him. Was thinking that wisdom comes with age, but I see you doing great. The time for me to leave my career, friends and boyfriend is so close and i don’t know how i’m going to deal with it.
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Dear Cristine,
Wow, I’m sorry for all that you are dealing with. You need help!! Look into your local Department of Aging and see what programs they have have. Also, google dementia and you will find some support groups. Looking forward is overwhelming. Talking, either in person or via computer, can help you. There are caregiver’s that are further along, or on the other side of caregiving that can provide some very practical information, tips etc. that can help you. Being a caregiver is like a job that you are thrown into, but without any training. So get as much ‘training’ as you can from others. Caregiver’s at times feel like it is all or nothing. You may find programs that can help you maintain a balance where you still have a little bit of your own life left. Yes, the rollercoaster of emotions is hard to deal with. take care.
Michele
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It helps to read other comments from fellow young caregivers. My husband and I married 4 months after meeting and he was deployed a couple months after our wedding, only to be injured 7 months after our wedding. My husband who returned to me was a very different person than the man I married but I love him dearly and will not forsake my vows for what has happened to him. I have been his primary ,and at times only, caregiver and support system. My husband didn’t ask to become a paraplegic and certainly didn’t ask to have debilitating chronic pain therefor I could never make him feel like a burden and keep my feelings locked inside. I have been looking for a group similar to this one for the past 8 years and am happy to have found this one. I have encountered many support groups and have found myself being the youngest and not relating to the same issues others have. I would love to hear how others handle various situations and hopefully get some much needed emotional support I have been searching 8 years for.
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try being 21 and caregiving. im not trying to downplay your caregiving but dont call yourself a young caregiver. sorry you had such a great time in your 20’s and regret not doing it earlier so you had an excuse to get out of it. ur lame
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To sour puss above… It’s natural to be angry.
Pretty much everyone who have told their story on this blog shares one thing… they are taking care of someone they love and it is hard no matter when you are faced with that challenge. Most of us have probably been angry at some point in time.
I personally am an old fart now but grew up with the blessing and challenge of helping my Mom as she had suffered polio when she was eight. First off, any of the difficulties that I helped with pale in comparison to all of the operations and therapy she went through when she was a kid but it was still tough throughout my entire childhood, not .
Now that I am married and have children we are faced with the fact that my wife has severe rheumatoid arthritis and is more and more bedridden and in constant pain. The reason that I was searching for information about being a young caregiver is because of the emotional distress my 14 year old son is experiencing because of her disease process. He loves his mother dearly and will do anything for her but is starting to feel angry and depressed because of everything he knows we are missing out on because of her condition and/or the financial burden we face because of the illness.
He left the room in tears a little while ago because he was ashamed about getting angry. Now he just walked back into the room after talking with my wife and is all smiles again for now.
We look at every day as a chance for a good day but deal with it if it doesn’t turn out that way. When it gets too tough we make arrangements that allow us to get a little space and regain strength.
Keep in mind that the loved one you are caring for probably didn’t ask to be in the situation that they are in and if nothing else be glad that the roles aren’t reversed. There are plenty of strong young souls that don’t get to the ripe old age of 21 before they are hit with a disability.
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Hi Kelsey,
I just stumbled upon this blog as I’m thinking of creating my own. I’d love to exchange emails. I’m just about to turn 26 and I live with my grandmother who is almost 91. I was caring for my mom also for the last 3 years who had breast cancer. She died this past October. So now I’m grieving, trying to finish my Bachelors (8 years in the making!), working full-time, and caring for my grandmother…
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It seems no one has responded to this in some time, but I can relate strongly to Erin who commented around this time last year. I am 21 and I have been a caregiver in some sort, but much more now, since I can remember. I would love to exchange emails to just relate, etc.
Kelsey
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It does feel nice not feeling like I’m the only person going through what I’m going through. I recently turned 25. My father was diagnosed with malignant brain tumor and has btw 1-5 years to live. I was sending away graduate applications to medical school when we found out about his diagnosis. I have since withdrawn from my classes and graduate applications. I also feel like it is hard for my friends to understand me. I have withdrawn from school and all forms of a social life, except the time I spend with family. I have no brothers and sisters and my parents are divorced, so I know the right thing for me is to be with my father for the next couple years we have together and take care of him, but I feel like Im losing the best years of my life and my medical school dreams have been crushed. Im scared of what the future holds for me now, I was so set on medical school and now I am questioning if I should ever go back to it. I’d be too old for med school, won’t get married and have children at that rate 😦
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Wow, you certainly have a lot to deal with and no one will ever understand exactly what you are going through. On the bright side, there are many that will understand most of what you are going through. Caregiving requires a lot of self sacrifice, as you have discovered. One of the challenges is to find a balance in it so you do not completely lose yourself in the process. If your Dad has been hospitalized recently, go to the social worker of the hospital and find out what support services are available. If not, ask at the front desk of his oncologist if they know of any resources for help that your Dad would qualify for. It sounds like with being an only child you will be, and are willing to accept a lot of the load of responsibility for your Dad’s care. It is not reasonable to do it without any help at all. You need some part of a social life and do not feel guilt about having it. Your life is NOT over, your dreams although on hold do NOT have to be crushed.
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I had been a caregiver for almost a decade before my mom left to live on her own due to the strain in our relationship (she still treats me like a child and is a bit of a bully). After a decade apart, I’m now back in the caregiver role and found your post very interesting. This time around I’m making sure I don’t play the martyr, as this article points out http://pepperpot.ca/featured/how-to-cope-with-aging-parents-tips-for-women-caregivers/, and that I make sure the boundaries are well-respected. I believe it’s my responsibility to help aging parents but I don’t want to be burned out, broke or abused while doing it. It’s tough for many caregivers, especially women, to strike a healthy balance in a caregiver role.
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Hello all,
My name is Brandy and I’m the 28 year old caregiver of both of my parents. My father,61, has Congestive Heart failure, is diabetic and has passed on being on the doner list for a heart. My mother, 59, has early onset Alzheimers and is also a diabetic with heart problems.
Being an only child, primary care giver for 2 parents, working a full time job and trying to have a life has been too much. Something had to give. So, my social life went.
Being a caregiver started for me when my mother had her first surgery when I was 19. Things for both of my parents have gone down hill from there. Surgery followed surgery, doctor after doctor.
I haven’t been on a date since I was 20. I work and I come home. I do dishes, laundry, clean. Cook most meals, my mother won’t eat for anyone else but me, and give insulin shots.
This is my life, day after day. Most days I know I have made the right decision. In staying, not running. Dealing with the things that my parents won’t be able to handle. Most days I love being there for them. Other days, like today, I can’t help but envy the few friends I have left. The ones that date. Shop. Go on trips.
My parents are on disability. The recieve a check once a month. It helps with the bills. Some.
This post may have not made since. It has made me feel some better to have a least gotten this out.
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AUBREE,
Thank you for all of your help and advice. Im looking into couseling and trying to get it approved through my insurance.
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Erin,
please don’t give up. I feel your pain. If u can’t find a counselor who helps caregivers just find any counselor you like. I see one and it really helps. Maybe you could also call your local social services and ask to speak to someone who deals with aging issues. In my county we have several programs to help seniors and disabled people and their caregivers. Someone in social services should know if any programs exist and perhaps at least could give you some advice. Try googling “community services board” and your county too. I know it feels like you’re alone right now but you’re not and it’s not hopeless but I understand it feels that way. Again j would suggest sitting down with your mom and calmly explaining that you want to help, you love her, and you are desperate for her understanding that you need a little time for yourself. If she just doesn’t get it and is unwilling to compromise, as painful as it will be you may just have to go ahead and take some baby steps toward your independance. She may learn in time that she has to let you go a bit. First try all the local resources you can and see what advice you get. And if she has a close friend then CALL her and tell her how you’re feeling. I’ve had to do that several times. I felt bad for going behind my moms back but in the end it helped us both. Her friend came to her despite moms objections and I got some relief. It’s so hard but you need to ask for help anywhere u can. I wish I could help… Maybe I could do a little research for u if u want to tell me your state and county. I used to be a resource specialist for a non profit on aging and an pretty good with finding things. I’d be happy to try!
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Hey Aubree thank you for understanding where im at. its nice to know im not alone in my feelings. I do suggest her calling her old friends but she doesn’t want to, She says that she wants to be social and go out but when i suggest anything she turns it down. I have asked her if she would want a “comfort keeper” is what we call them to come see her and she gets upset and starts crying that im trying to get rid of her and i don’t want her around but its just the opposite. i want her to get the help she needs so she CAN be around longer, im between a rock and a hard place and i don’t know what to do anymore and now she isn’t taking her medication like she should and showing signs that she is about to have another seizure. Ive called the ambulance on her a few times but our hospital doesn’t do anything but let her sit there and come out of it then send her home. her neurologist is out on vacation for 2 weeks so i cant even call his office for help. I getting to the point to where i don’t even want to come home and deal with it.I get so mad because i feel like i have to babysit her all the time just so i know she takes her pills and insulin and i hate it! she is 57 years old and she is acting like she is 2. i don’t know if it is because she wants attention or if she has just given up on her life. I’m looking for a counselor that helps caregivers but nothing so far, im coming to the end of my rope and i don’t know what to do anymore. Please god give me a sign as to what i need to do. I thoughts and prayers on with everyone on this group.
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I have just read the past few comments, and I think we all suffer so much from trying to be everything for those we care for. We get little or nothing in return, and for the most part we don’t expect anything.
However, we ARE HUMAN….and now and then we want those we care for to understand. Just understand, how hard we work, and how much we try to make things better for them. When this doesn’t come….it’s painful. I am caring for my husband who had a stroke almost 7 years ago, and before that I was part time caregiver for my aging father and it;s like….would it hurt them to once in awhile tell me thanks, thanks for all that you do….thanks for devoting yourself to me and all the wonderful things you do.
BUT….they don’t…..it’s heaven mystery….the frustration comes I think…when we expect some type of understanding and thanks.
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Hi Erin, don’t feel bad I know exactly how you feel and I am in a similar situation, only I am 32 and married. my husband and I live with my mom. she has MS and is more self sufficient then your mom but she still needs us for a lot of things. she does understand that we need to have our own time and space together and your mom should too. you are young and deserve to have a social life and alone time, but i feel your pain and guilt when leaving her. i used to cry every time i thought about my mom being all alone in her bed when i had my husband to cuddle and my friends to hang out with. that’s why we moved in with her. but i still feel trapped a lot and feel like i need to be around more. sounds like you need to have a serious talk with your momn about your feelings and be firm but loving. as your mom, she just has to understand and i bet she actually does want your to do things on your own, but is just fearful of being alone. no mom wants their kid to be a hermit and suffer, trust me. just talk to her. maybe she has a friend that would be willing to come sit with her for a couple hours while you are out. can you ask that friend? does she have medicaid that may pay for some in home care just for a few hours? there are options so please discuss them with your mom, or seek a counselor to help you make decisions. you must have your own life, as hard as it is. see what you can do. i’m praying for you, and all the people here.
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I am 21 yrs old and i have been a caregiver for my mom for almost 7 years, she has fibromyalgia .type1 diabetes,recovering from a recent complete knee replacement and has now developed siezures. I have an older sister but she moved away 3 years ago to California leaving me to care for our mother, she was never really around to see her sick anyways and always avoided the issue because i was there to help mom. i love mom to death a truly do and i want nothing but to care for her and for her to get better but it just doesn’t seem to get any better. we don’t have a car and we don’t get to go out places like we used too the only places we go is to doctors offices.i work part-time as a pharmacy tech and have recently enrolled in college as a full time student. i recently moved back in with my mother after her last big siezure and she relies on me for EVERYTHING. shopping,cooking,giving her medication,laundry,and cleaning when i can. i do go out a couple hours almost every night and when i come home my mom makes me feel guilty because i don’t take her. i hate having to lie to her when i want to go out or when i want to be alone. i want her to be out enjoying her life not staying inside like a hobbit, but she wants to go with me to the places i hang out at and i feel like “these are my hang outs i don’t want to share them” is that wrong? Am i a bad caregiver/daughter because i don’t want to spend all of my time with her? i feel like im abandoning her because i want to get away. i want to call my sister and say “its your turn.” Im afraid to have a life because i know my mom needs me. i dont want to get a phone call saying she is sick again but i dont want to be sitting next to her watching and waiting for it to happen either. HELP ME PLEASE!!!!!
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I’ve been a caregiver for 4 years and I’m 23. my sister also moved away a year ago so I’m left me by myself. I am a caregiver for my mum as well and also go to college full time. I know as a caregiver, you don’t often get asked this but, How is your mom doing? Also How are YOU doing? I hope Her knee replacement went well and I hope you had fun in college. I get guilt trips as well all the time, especially the one of ” You are lucky you have legs to walk! you aren’t stuck in bed/wheelchair and at the mercy of others!” You my dear are not a bad daughter, you have done everything you can to help and you have worked damn hard. if you need anyone to talk to I would be happy to chat with you. Tiger_ca_3@hotmail.com.
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THIS IS THE FIRST ENCOUNTER I HAVE WITH THIS SITE .I NEVER KNEW ABOUT IT IT TOUCHES THE VERY CORE OF MY HEART JUST READING SO MANY.I MYSELF AM A CAREGIVER AND YES IT HAS BEEN HARD ON ME.BOTH OF MY PARENTS ARE CANCER PATIENTS MY DAD JUST RECENTLY WENT THROUGH PROSTATE SURGERY FOR THE SECOND TIME.WE JUST RECENTLY WERE AT M.D.A. ANDERSON HOSPITAL FOR THAT SURGERY.DONT KNOW IF ANYONE HAS HAD FEELINGS OF NOT BEING APPRECIATED BY OTHER FAMILY MEMBERS OR BEING QUESTIONED BOUT YOUR ABILITIES OBF BEING A CARE GIVER I FEEL THAT IF THE PERSON WHO IS BEING OR BEHAVING NEGATIVE TO THE CAREGIVER SHOULD WALK IN MY SHOES WHEN THE SICK ARE HAVING A BAD DAY OR BE AT ALL DOCTORS APPOINTMENTS OR STAY WITH THE PATIENT IN HOSPITAL FOR WEEKS AT A TIME.IT DRAINS YOUR ENERGY EVERY WHICH WAY.BUT AT THE SAME TIME I FEEL GOOD DOIN THIS.DONT PRAISES OR AWARDS JUST POSITIVE FEEDBACKS.IM 44 YEARS OLD AND BEEN DOIN THIS FOR THREE YEARS AND I WOULD DO IT ALL OVER AGAIN IF I HAD AFTER ALL OUR OARENTS TOOK CARE OF US AT ONE ONE TIME SO WE SHOULD RETURN WHATS PNLY FAIR TO THEM.ONE MORE THING I WANTED TO SAY .IF ANY CAREGIVER MALE OR FEMALE HAS RUN INTO THIS…… WHEN BEING A CARE GIVER DID YOUR SPOUSE OR SIGNIFACANT OTHER WALK OUT ON YOU OR DID LOSE PATIENCE WITH YOU. WOULD APPRECIATE YOUR COMMENT………
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Thank you so much for taking the time to write this. I’m 26, and I’ve been helping my elderly grandmother take care of my grandfather who has both Parkinsons and dementia. I’ve been struggling with all of the changes that this brings into my life for the past 6 months now, and this is the first time that I feel like someone truly understands what all of this crazyness is like.
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Hello Everyone….
I am caregiver to my 68 year old husband, I am 63 and have blogged before. He had a stroke almost 7 years ago and is doing relatively well…but….
I just felt I had to get on line today to vent….I don’t really talk to my friends about stuff like this and my daughter is off on a well deserved vacation Memorial trip.
And I am left home with my husband who has done really well but i get so frustrated with him sometimes when I can’t deal with how selfish he can be sometimes.
There has been a lot going on today, with some extremely important plumbing work being done hence the water had to be turned off….he freaked out on me for the past two days and i can’t understand why this is happening. He has his full intellect, but when there are workmen in the house and my attention isn’t directly on him….he behaves like a spoiled child….what is this?
Has anyone else experienced this?
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Joshua,
Just as joy is in the moment sometimes, so is the support you need. It is of comfort to know people are having the same experiences, and it doesnt have to cost money. I have found this site inifinitely helpful. It is hard, heavy and draining most of the time, and joyful moments few and far between, I urge you to reach out. If there are family that can help, ask them. Call your local council on aging or disabled services agancies and ask for help. Sometimes it is a string of phone calls, but it may be worth it. We are not perfect people, we all have limitations. Nothing in your past makes you deserve what is happening to you now. We are all victims of random circumstance. Please know we all understand. Good luck and check back here often.
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I too had to put my life on hold to become a caregiver to my parents after they both had disabling strokes..my mom’s happened over two years ago..it was rough..then my dad had one last year..I was married once, but divorced three years ago..though I’ve been clean for several years, I got into partying too much and some terrible hard drugs when I was a teenager..i kicked the habit without detox or rehab..also was molested when I was a little boy..story of my life in reverse chronological order..I’m 27 now..wondering what’s next..my life has been put on hold for my parents..if it were me in such condition, they’d do the same for me..but it is lonely and depressing..they say what doesn’t kill us makes us stronger..I’m starting to wonder if that’s true..i feel like breaking down crying fairly often..sometimes my thoughts get Much darker..but I have to keep going..my parents are great human beings..and I can’t let them down again..I probably need counseling/therapy..but I have neither the time or the money for it..slowly my self image has improved..but this is still a long hard road..and i may be “frozen in time” like this for many years to come..it’s not easy finding support..sure, it’s out there..but usually for a price..and designed for people who don’t have a history like mine..
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Sara,
You blog post was very touching. Becoming a caregiver is an incredible challenge, and I can understand how you feel “frozen in time”. While I am not a family caregiver, yet, I am a medical caregiver and have worked one on one with families and loved ones going into these tough situations. It is so hard, and you are right to say that not everyone will do it. I admire your strength and compassion and hope that you always make time for yourself. Good luck and best of wishes to you Sara, and thanks for sharing your voice on the web giving others perspective, hope, and encouragement.
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Well, if youve been around here awila you probably heard my sad story, but to recap breifly my husband was diagnosed with post traumatic dementia at age 37 about 5 years ago. I understand what its like to not be able to concentrate on your work for fear your husband is lonely, hungry or scared. I know what its like to watch all his friends disappear, or worse, make fun of him behind his back. I know what its like to beg for support and help from family members to no avail. To cry or yell at the drop of a hat.
Finally I had no recourse but to file for divorce and send him to live with his family. He has since delined sharply and been sent to live in a nursing home. We have a daughter together, and I am still allowing his parents to see her, although it is a mixed message at best to my daughter, who is old enough to understand that there is tension between the adults in her life. As for myself, I still have lingering doubts about my decisions, my course in the future and how best to support our daughter. A friend of his went to see him th other day and urged me to go, however, he couldnt be sure that he recognised him because he didnt, or couldnt, speak. I am uncertian if my visit would be productive or if it would do more harm than good, or if I should allow our daughter to see him in his present state. She is already experiencing a host of anxiety related disorders, including panic attacks and nightmares.
Until the day he mercifully passes there will be no rest for his daughter and no clear path for me. As much as his family believes i dont care, it breaks my heart every day, not much has changed for me except that I am better able to focus on my daughter and try to help her through this. I still cry, I am still painfully lonely and I still second guess myself. I will feel this way for the rest of his life.
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Hello,
I am a 37-year old caregiver to my mom who had a stroke several years ago. Over the last couple of years she has totally lost the ability to walk and her left hand has become severely contracted so that she cannot use it anymore. She is also in chronic pain, extremely depressed, and has started developing major bed sores from sitting in her chair all day every day. I fee like all I ever do is manage her doctor appointments and figure out ways to pay for her medical bills how to resolve each issue as they come up – all while struggling to try to hold down a job and support myself as well. The worst part is when she begs me to do something to make things better for her and I just can’t. I don’t always have answers for her and I get so frustrated and sad like I’m letting her down. I feel completely helpless. When I’m not feeling sorry for my mom, I am resenting her for taking away my “freedom and innocence” as Sara said. I feel like I’m still figuring life out for myself and now I’m expected to know to figure out life for my mom with all her requirements: medical, financial, emotional and otherwise. It’s like Sara said with the role reversal issue – mom becomes the child completely dependent on me; and there’s me with no mom to ask for advice or help when I need it most. Feel lik the weight of world is on my shoulders sometimes and I am not completely confident that I can support it. Sorry for rambling and feeling sorry for myself but I don’t have anyone to talk to about this stuff. It feels good to get it off my chest.
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Hello,
My name is Michele, I’m 51, my husband and I just celebrated our 23rd wedding anniversary, and I’m working in my second career.
My husband’s symptoms of memory loss became prominant enough to give us notice and start seeking medical care about a year and a half ago. When we look back, he got lost in a hotel at Epcot on our 20th anniversary. That was the first time we truly remember something odd. Testing, numerous physicians, and lots of new medications later, we still don’t have a true diagnosis, but we know our lives and relationship have changed. His personality has changed, medications mixed with alcohol sometime contribute to outbursts of frightening anger. Some days he is clear, other days he is unable to absorb any new information, loses focus, and one of these days, will get lost. He became deeply depressed a couple of years ago, and now I’m finding myself deeply depressed. Mostly every waking minute I’m either worried about him, or trying to focus on things like my job. I am a critical care RN and work 12 hour shifts. Every day that I’m at work, if I don’t talk to him on the phone, by the end of the day, I have no idea if he is home or got lost going to the store. I realize that between caregiving at work, and trying to caregive at home, I’ve become overwhelmed.
At 51 years old, I’m not supposed to be taking care of my husband. These should be the best days of our lives. Most days I struggle between relating to him as though he were a 7 year old child because that is about the level he relates on, then he switches back and I relate to him as my husband, the guy who has always been my soul mate. I’m getting very weary and find myself crying or yelling at the drop of a hat. Don’t know where to go from here. Seeking some guidance and hoping to have dialogue with others here.
Thanks,
Michele
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Hey everyone,
I have really enjoyed reading all your open and honest experiences about caregiving, you are all amazing. Throughout my teenage years I provided care for my mum, who had arthritis, and my father suffered from depression and was an alcoholic. Now I am at university, I am very passionate about looking into the experiences of other family caregivers. If there are any young people between the ages of 16-25 who provide emotional and/or physical support for a family member and would like to get involved in a short 15 min survey looking at how you feel and cope with life as a caregiver then go to http://www.yacproject.org. Any help with this would be much appreciated.
Take care, Kate
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dee
Hopefully your mother will heal and as she does she will understand a little better. Brains take for ever to heal. Drs. told me after my husband’s stroke six years ago that he had plateaued and would not get any better and they couldn’t have been wronger.
After almost four years of waiting on him hand and foot….he started ever slowly to have his meals at the kitchen table….from there he started trying to get himself a glass of water. NOW….this year for the first time…he is preparing toast, cereal on his own with one arm and walking with a cane….Unbelieveably…when we had never gotten that kind of encouragement from the drs. ALSO….he got his drivers license back! Best news ever…
Try and have some faith that your life is on a short hold period but that soon you will find a way to get married, have children and have the life that you want.
Dream of better days and they will come. I get frustrated like anyone else but when I get to the end of my rope often there is the glimmer of hope and faith.
Hang in there.
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Wow, it is finally nice to feel like there are other people who are experiencing this. My mother has cancer and I am 24 years old and an only child. My parents divorced years ago all of my family live hours away. I had been living on my own up until about six months ago when I moved home to help my mom after having a brain surgery. After her surgery she lost her speech and she takes her frustrations out on me. My mom doesn’t appreciate the things that I do, nothing meets her expectations and it is literally exhausting trying to keep up. She thinks that it is my responsibility to pay all of her bills and keep her huge house with a ridiculously large mortgage payment all because she is ill.
I lack the ability to make choices in my life and it terrifies me because I want to get married and have a family and I feel like I will be forfeiting this due to my caregiving role. There are so many negative people around me who make it seem that I am a bad daughter for wanting to have a life of my own and that makes things worse.
Things have gotten considerably worse lately because no one understands my need to grow up and become an adult. My boyfriend has been thrown into the madness as well and everyone feels that he is a bad person because he knows how much abuse I receive on a regular basis from my mom and he doesn’t want me to continue to hurt myself trying to please everyone elses’ expectations of my caregiver role. It is to the point that I hate going home because everyday there is a complaint or depression and I’m so tired of being dragged into it.
No one in my family thinks I should move out or try to live my life and juggle my mom’s responsibilities. But no one else is willing to step up to the plate and help. I hurt daily and all I want to do is move on.
Thanks for listening.
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Evan, Kelli and Everyone
I also understand. I have been constant caregiver to my husband for the past six years. He had a stroke on Christmas eve 2004 and nothing has been the same since then. While in a doctors office shortly after his stroke I read an article about a man who had a stroke and his wife and he commented that all of their friends and family deserted them and after three years they had none of the same friends….yep….My brother and his wife visited twice each in four years….we are totally estranged from them now for obvious reason and they live 12 miles away.
The first winter I was home with my husband….I use to look out at the snowy winter and think….where are they…where are all our friends….doesn’t anyone want to give me a hand or help? Nope….My husband use to say ….do they think they can catch this? In the spring one of his best friends waved while I was cutting the lawn….I was 57 my husband 61 at the time of the stroke and we were at the age that friends fear bad health is on the way. I thought his friend might at Least offer to help….but no…no one has, can you believe that?
I had a small bookkeeping business when my husband got sick but I had to give up most of my clients when he first got sick, because I couldn’t spend the time away from him. Finally March of 2009 my last client gave ME notice and now I’m unemployed. Our family business trickles in a bit of income, but not nearly enough to keep us afloat. I wake up nights wondering what is going to happen. I get angry, scared and tired, just really tired. He doesn’t want to go out in the bad weather….and I worry about leaving him alone, if he falls he can’t get up….and he can’t open most of the doors on his own…..it’s a terrible feeling. I somehow feel trapped when I know others have it alot worse.
Loosing your independence at such a young age like most of the bloggers is AWFUL….I hope and pray things get better for all of you.
barb
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I’m so happy to have found this forum, and my heart goes out to all of you here. My mom was diagnosed with MS while I was still in college. My stepdad has to travel for business and basically is only home a few weeks out of the year. After I graduated I decided to move home to help her, since she was dealing with horses, five acres, her health crisis and no help. I was devestated to leave my now husband…we ended up dating for 2 years long distance. It was the most bitter and depressing, guilt ridden two years of my life. I wanted to be with him. I felt selfish for wanting to leave my mom. I was getting drunk every single night bartending and not going anywhere in life. When he finally moved up here we got a place together and I was so happy finally. I got a better job and life seemed to be moving forward. But I was terrified that my mom was living alone again. I would cry thinking about her being by herself and lonely, and wondering when she would fall again. After almost 2 years of this, we finally moved back into her house. We got married 3 months ago, but have to stay in this little appartment in the house and barely have any privacy. When we argue it seems twice as bad because we can’t be alone. But he is the best man in the world for being here with me and helping my mom, he loves her as if she were his own mom and he does anything she needs. I am so lucky. But starting to feel that bitterness again like…when can my life actually begin? When will my husband and I have the time, space, and finances for a family of our own? It’s really affecting my ability to deal with things because I am always down, worrying about the future. My mom continues to get worse and all I can think about it is “what next”?
Thank you all for listening and being here!
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After several days of crying on my best friend’s shoulder, she urged me to research forums or support groups or something. Your blog was the first I found, and it is so good to realize that I’m not the only one who feels like my life has been stolen. My father had a stroke in April 2010, and shortly thereafter moved in with me. I’m 27, married with three young children, and what I thought was my life plan has suddenly been drastically altered. My father was my best friend, I talked to him about everything, and we HAD an amazing relationship. When he had the stroke I didn’t even question the decision to move him in with us, partly because due to financial reasons, there was NO other choice, but mostly because he’s always taken care of my husband and me when we needed it. I felt it was only fair to do the same for him. When he moved in, though, I quickly realized that the person that was in his body was not him. I honestly feel as if my father died when he had the stroke, and the man in his body is a total stranger. He was the happiest, sweetest, most loving man I’ve ever known. The stranger in my house is MEAN as all get-out, hateful, demanding, rude, selfish….so totally not my father at all. He doesn’t try at all to help himself. In fact, it seems as though he does everything he possibly can to make things as difficult as possible. I sometimes wonder if he’s just pushing me to see much I’ll take before I turn my back on him. I hate feeling like I’ve put my entire life on hold, our plans to move, to have another child, to even enjoy watching my babies grow up, and he just doesn’t care at all about me. As hard as the daily care is (he can’t do ANYTHING for himself) I wouldn’t mind doing any of that if I could just have my father look at me like he loves me and not like i’m some employee who is not fulfilling his demands. I get so angry and resentful at the person he is, and then feel guilty. I feel as though I’m grieving the father I lost while I work my butt off to take care of this stranger who hates me.
That being said, while I wouldn’t wish this on another person, it is so good to know that what I’m feeling is normal, and I’m not just a horrible person. Thank you so much for posting!
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Funny, I said that the other day to someone about Facebook. I think I’ll have to cancel my memebership. Talk about a human marketing campaign..but its funny I feel the same way about missing out on life, especially because my infirmed is my husband. So twofold, theres missing out on life and missing out on having a husband, all at the same time. In my case I also have to deal with the varying degrees of denial/anger from his family when im doing all i can to get out of bed every morning. Looks like hes going to have to go at least to a day program very soon, he cant be alone, and that will be another round with his family, despite whose limited involvement, or total absence for that matter, will feel like they have the right to tell me how to care for him.
I dont envy any of us. But I, like you was greatly comforted that there are people who can relate to us, tragic as that is. Please know that we are not perfect people, and that we meet our challenges as they present themselves, be it the worst possible circumstances. Sometimes I feel like I have no right to complain, some people in the world have it a lot worse. But for me, this is as bad as i can imagine. Please continue to have faith in yourself and your decisions, and check back here often, it is a source of great comfort.
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Seven years ago, a month before my 21st birthday, I lost my father to leukemia. I stayed in-school in spite of all plans otherwise so that I could help my mother take care of him, and after he passed away, put off going to grad school to deal with the grief. I finally went back two years later, and while in grad school, my 24 year old best friend was diagnosed with a rare type of melanoma. He passed away a few months after I graduated at age 26.
Now, barely two years after, my mother has just been diagnosed with lung cancer. I have no siblings. No boyfriend or spouse. My job and home are in New York, while my mother lives in Virginia. I came to visit for Thanksgiving to find she’d been admitted to the hospital, and haven’t gone back yet. I left my apartment an embarrassing mess, my job with a vague response as to whether I’d be back or not, and am sitting here now, at 5AM, having not slept, terrified of losing THE person, MY person, my mother, to cancer… yet also selfishly terrified of what will happen to me, my sanity, and my life. I’ve spent the last 11 years dealing with cancer. The entirety of my 20’s, my whole adult life so far, has been defined by this disease. And now, the thought of putting my life on hold indefinitely is not just terrifying, but completely overwhelming.
I’ve never felt so isolated in my entire life. I don’t know how I could possibly be strong enough to take care of anyone else, let alone myself. And, like so many others have echoed, it feels like so few people can truly relate. I’m 28, looking at my friends’ pictures on Facebook of rowdy holiday parties and normal young adult stuff. Meanwhile, I’m learning how to change oxygen tanks and driving my ailing mother to chemo in the throes of a snowstorm.
My heart goes out to everyone who’s ever had to go through this at a young age. No one deserves it, and the people who do it are truly doing something selfless and amazing. It feels horribly selfish to say or even think these things when a loved one is going through something so much worse, but that’s just part of it. While I’m not glad that any of you are going through this, I am glad that so many of you have been willing to share your stories and thoughts as reminder that what I’m feeling is actually quite normal.
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It is painful to accept our lot, the hand we’ve been dealt. I miss my husband every day, and he’s still here. I swear, if one more person tells me to take care of myself, God, people just dont get it. If I thought it was bad a year ago, its even worse now, I can barely hold it together anymore, and its becoming increasingly clear I have no choice. I have no partner, I have no support and I have no idea what Im doing…I watch my husband die every day, and I mourn him every day…all while our daughter watches and cant understand why our life has to be this way, and me with no explanation. Because of his age, I cant find a facility that suits his needs. He has gotten angry a few times, thats a new symptom…and im not sure that he can stay at home any longer. I hate it when people call me strong, cause im not. I hate it when people talk to me with their heads cocked to one side and their lower lip protruding. I hate it when people say they’ll pray for me. I hate everything about this.
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When u r feeling down it is hard to hear opptimism although well intended–
I think the younger you are the harder it is to give up your dreams
Don’t get me wrong here I am not diminishing anyone’s suffering
Counseling is all that saved me
I wrote a book I tried to tell the truth about what it really felt like
How deep down it hurt
My husband had a stroke when he was 33, I was 28 our children were 5 and 11
My husband lived 23 years after the stroke
He was my Cinderalla story
But I had to learn to live and go on. I had a sick husband and two small children. I tell people the thing that calls you is the thing that saves you in the end for me that was my husband and children. When that day happened I wanted to lay down on that couch to die and never get up again–but my family needed me
It has been very hard to get past that experience I say past because I don’t think you every get over anything that was that hard but I have learned to go on
Now ai am taking care of my aging parent along with my sister’s help
I think that is harder than taking care of your love although the whoie experience almost broke meThe longer ther duration the harder it is.
The younger you are the harder it is emotionally
Now I am in my sixties and my friends who have aging husbands with a stroke and Lou Gehrigs Disease wonder how I did it
I don’t know
The fact is we don’t always get our dreams so we adjust to life–I hope yoou do get your dream of medical school–lot of fortitude–lots of drive–
Being a care giver wears you down makes you depressed–find a counselor you like I went to several and found one who I felt really knew me and understood the depth of my pain and suffering
By the grace of God
Linda miller
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Kelli, you have taken all the words right out of my mouth. I feel exactly like you. My husband has a brain injury and I’m going through the sane anger, frustration, and fear. I am mourning my husband like he’s dead even though he’s next to me. It’s unbearable.
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Hi my name is Marina and I’m 21 years old. My mom had a stroke when I was 12 and a half years old…I’ve been the only one living with her ever since and the only one raising myself. My dad had already remarried and had a new family and I tried to live with him while my mom was in the hospital but I felt like my stepmom just did not want me to be a part of their life so as soon as my mom got out of the hospital I went home thinking everything would be all better again without the slightest idea of what lied ahead and how much she had changed or how much I would change. I remember everyone saying how well she was doing from the outside looking in because somehow she was able to put on a front or maybe they just wanted to lie to themselves so they wouldn’t have to feel an inch of what I’ve felt for years. Even now it would just take a week of living with her and anyone would be able to see that it can be a nightmare and that all her logic and rational thinking has been completely scrambled. I know deep down some where it’s her as like I’ve read on other posts the old her peeks through every now and then. I also still have the hardest time accepting that she can’t be a mother to me anymore or rather I miss the supermom and best friend I once had. I’ve been waiting all these years and now I’m an adult and I still feel like there’s a little girl inside of me that still wants my mom back. It makes me angry that I’ll never be able to fill that hole in my heart. I still love her or I wouldn’t still be here and I know she loves me…I guess it’s just like what other people have posted that it’s more like two people who love eachother. I long for a friend to understand but they just can’t…some of my friends my age still call their moms mommy and I can’t help but feel a little jealousy that their roles haven’t switched but it’s not their fault and I would never wish my situation on anyone. I feel like half of me is still that 12 year old put on pause and the other half of me is an old woman that grew up too fast and I can’t find a balance between the two. I have to throw out old food because my mom keeps things years after they expire and I don’t want her to get sick, but she’ll throw a tantrum seriously like a 4 year old and even go and dig in the garbage so I’ve had to start pouring sauce or whatever I can think of to keep her from trying to dig through the bags. I’ve wanted so badly for her to know what I go through but just like crazy people who don’t know they’re crazy she doesn’t know how her logic and reason have been affected. I want to be happy for her when she says she’s 100 percent better and I let her believe that even though its not true because hope keeps people alive. Yes she can talk alot better but it’s still very hard to know what she’s talking about alot of the time as she has refused speech and physical therapy. Her right arm and hand are still paralyzed too. I do all the things that require two hands or just doing all the things that she’s simply given up on and blamed on her one hand. Although that is extremely challenging to only have use in her left hand when she used to be right handed, I know her hand would of been alot better by now if she had actually tried to get her motion back and went to physical therapy. The only support we’ve had is from my grandma…but she lives hours away and has only supported us financially which of corse we appreciate but at the same time it’s nothing compared to actually living with my mother. My grandma thinks I’m just an ungrateful spoiled brat who’s had everything handed to me and that I’ve never helped my mom in anyway(her words). It brought me to tears that she could be so far from the truth and that there has to be any bad guy in anyone’s eyes. I’m not the bad guy and neither is my mom…its the affects of her stroke. I admit I may have been spoiled before the stroke…but the only thing I want back from that time in my life is a parent who I can go to for advice when I’m lost and who can put things into words that I can understand. I would give everything up for that. And being so supposedly “spoiled” and feeling so close to my mom was what made it all the more tramatizing when she had the stroke because I was completely dependent on her and in a flash it was all taken away and I had to mother myself. No matter how many times I write this down in a journal or tell this to a counselor I never find any closure. My mom and I were both abandoned in my opinion and none of this is her fault…I’m just angry at the stroke and angry that there were absolutely no adults around who could see that a twelve year old shouldn’t be taking care of a 57 year old…now she’s 66 and I thank god she’s still alive because I know it could be way worse, I had a friend who lost her mother to cancer and I’m not even going to pretend that I know what that’s like and I know some people die from strokes. I just get angry when my mom says it was 9 years ago because it’s a current every day thing…its not like it just happened and then she healed in a week…no I live with the brain damage it caused every single day and I know because it was 9 years ago this is probobly as good as it gets. I’ve never wanted a job because I feel like I’ve always had one exept for the fact that I’ve been doing it for free and the only time I had to myself I used to drink alcohol or smoke pot to escape from the stress and pain…all I have now is my GED and I don’t know where to start because I can’t leave her and a nursing home would break her heart and she’d go crazy. I’m tired of sympathy with no understanding and I’m not going to numb myself anymore either. I know people mean well, but they’re completely clueless unless they ever go through it themselves. It’s like being a parent to yourself and your parent when you’re a young caretaker and honestly yes you love your parents but it shouldn’t be your responsibility, because it makes your relationship a job. Thank you for this website…its amazing to see that people have written down word for word exactly what I’ve said in the past and present. All I can say is I’m thankful we’ve survived and you have all survived as well.
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Hello!
Nice to find your blog today. As another young caregiver, I’m also a wordpress blogger who writes to stay connected and help stay sane.
My husband is even younger than I, and we haven’t been married long, so this was a big transition we sure didn’t expect before we even thought about starting a family.
Hang in there and take care!
Meg
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Dear Sara,
I just came across this and so much of what you wrote I can relate to. My mother was in a near-fatal car accident which left her with a Traumatic Brain Injury (TBI) and unable to care for herself, about 5 years ago. I was 30 years old. It became a second fulltime job to take care of her and deal with all the red tape that insurance, Social Security, Medicare, Medicaid, and doctors offices can bring – not to mention the mental stress of it all! I, too, often feel like I have been frozen in time while those around me marry and have children. And you are right about friends not understanding – though they try their best. And some friends have not understood and therefore, I had to love on beyond those friendships.
Seeing this thread, I see there are more of us. I know there will be more and more young caregivers as diseases such as Alzheimer’s are diagnosed at earlier stages and therefore ages as is beginning to happen.
This blog just gave me a bit of peace for the day. I’m considering starting a blog of my own of all these experiences and this just gave me more oomph to go ahead with it. Thank you!
Maria
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I sure do understand. The bitterness, the emptyness, the overwhelming-ness. All of it. Its normal. You’re human to want to have a life outside of teh unrelenting needs of others. I have had days where I want to crawl out of my own skin. grind my teeth flat…. Know that we are with you, all of us. It helps me to know that I’m not alone. BTW, your writing is very eloquent. You should read Poe. Maybe you should write a little yourself. Couldn’t hurt.
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It does help to know I’m not the only one dealing with this. I appreciate the compliments on the writing. I do write, in fact I’ve been writing since I was a little kid. I find it a good way to vent. Just wound up writing a new song actually.
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and we are dealing, arent we. I got Hospice involved, they are the only ones willing to help, we still have no prognosis. He could go on like this for 20 years. I miss my husband, but I cant break down, I may not get back up.
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To clarify, since the “(which actually is not often”) could be read both ways… I mean he does NOT go out of town very often. I don’t want anybody thinking I am alone with this all the time, that’s not the case. Perhaps things would be different if going out on the weekends did any good, but I don’t know anyone because we just moved, and I obviously can’t have a job or go to school right now. So I can’t really unwind.
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Evan,
I understand the stress you are experienceing as I too, am a young caregiver as I have mentioned in prrevious posts. It is an unrelenting 24 hour job. I did mention at my last appt with my husbands doctor about his mood, and they did prescribe Welbutrin, which gives him a few more happy, cooperative days then we had before. Never hurts to mention it. A good dialouge with the doctor that you trust can be a great resource. As far as yourself, you are going to need to fit in “you” time in as often as possible. I find it very calming just when i drive from place to place and I’m alone, I turn up the music really loud and sing along and for 20 minutes or so, have a good time. I try very hard to live in the moment, because if you think about the long haul sometimes you get overwhelmed quickly. Try to do your best at every opportunity, and give yourself a little credit for the huge responsibility you are shouldering. Noone is a perfect caregiver, we all lose our tempers, I promise you. Try to remember you are honoring your grandmother and doing your best. Dont be so hard on yourself. Hang in there (Don’t ya hate that one?) and I’ll check back to see how you’re doing.
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Thanks Kelli 🙂 Things are getting worse and I feel that your advice might help, so thank you. I do the drive thing and it helps, then I get back though and I want to drive again inside of 5 minutes. There is one ray of hope. She is going to see a Geriatric specialist…in late October. I do appreciate the advice, and will try it. However one major problem exists, and that is no matter what grand illusions I can manage to weave into the fabric of my perception, the fact remains I can not have a normal life. I have been single for almost 3 years, and I feel it inside, changing me into a bitter old man before I am even a quarter-century old. I can’t have a girl over in this situation. Let me break here and say I don’t want to sound like somebody that goes “HELP” and then mopes around saying nothing will make it better. While -if we are honest- that is technically the case, wallowing in it makes it worse. So I don’t want to do that. I am alone though, and it hurts. I can’t even carry on anything approaching a conversation with my grandmother. Not her fault, but facts are facts. All it really amounts to, my current life I mean, is text on a computer screen, some heartfelt and some soulless, but when it’s all said and done, the monitor is off, an almost monochromatic reflection of mediocrity coupled with a history of good intentions turning to despair. It is so lonely, and that is the most difficult thing, made more so by the admission of being alone. I seriously want life. I am pent up, and need a little romance and passion. I feel dead sometimes. I want my “Sara Thomas” (if you’ve seen that movie). I know this sounds incredibly dramatic to the point of being a little ridiculous, but it’s how I feel. I appreciate the suggestions, I’ll try what you said. Thanks again.
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Oh, and I don’t need a break one or two days a week for a few hours a day, so don’t mention the people that come to the house and watch her for a few hours, or an adult daycare I can drop her off at. It won’t help, I have weekends and nights to myself when my father doesn’t have to go out of town (which actually is not often) and I’m still going nuts with this. I need solutions.
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My father and I have been caring for my grandmother for years. I have been pretty actively involved since I was 19, and I am now 21. She becomes violent, belligerent, hysterical, etc. This happens almost every time I try to get her to the bathroom, or simply try to get her to sit facing the table so she doesn’t get food in her lap or on the floor. I used to be much calmer, but this is getting to be too much to bear. I snap after two minutes of
“Sit down on the toilet please.”
“No”
“Sit down on the seat so you can go to the bathroom”
“No, I don’t want to”
“If you don’t you might have an accident”
“Oh, that’s ridiculous”
“It’s not, sit on the toilet…PLEASE”
“You better watch it,” as she shakes her fist
“Sit down now”
“I’m not going to” with a nasty tone
Then it becomes “SIT down on the DAMN seat and go to the bathroom NOW!”
I know yelling is wrong, which is why I am asking for some ways to control myself so that I can better help her. I never used to snap anywhere near this easily, it is just becoming too much.
I’ve been looking for someone who is dealing or has dealt with this situation at my age, someone I could talk to for advice for someone who has no parenting skills (which personally I think are vital to care giving for an Alzheimer’s patient) and the patience of most 21 year old guys…I can’t find any. Help. Please.
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Hi Everyone,
Just found this site and can relate. I was 17 years old when my Mom was diagnoised with cancer. It turned my family’s life upside down. Between working and taking Mom to chemo therapy, my Dad was very busy. He worked nights, so when I got home from school he went to work. So, took care of Mom, the three younger brothers, made dinner, did the housework, then my homework, then to bed by midnight if I was lucky. Next morning, start all over again. You lose your social life very quickly. Before Mom’s cancer, would hang out with friends after school, attend sports, and discuss what to do on the weekends. Had fun!Not after Mom got sick. After awhile it was all I could do get some rest. And what made it worse is that relatives would not do anything to help. Can you imagine a 17 year old begging and pleading for some help from relatives and be told “what do you need help for?” When you and your father and are doing 18 hour days, yes you need help!
Could any of them visited my mother? Take her out when she was feeling good that day? Spend time with her? No, they could not. They were too busy with their fun-filled lives. My family became isolated. Didn’t have time for friends. They were going to college, getting married, having children. Felt I was missing out on life. Would have appreciated some help and support from ANYONE. Help with the laundry, pick up some groceries, cook a meal, do some housework, and most important, spend time with my mother! My Mom would have appreciated anyone who came to visit if it was just to sit with her and talk if she didn’t have much energy for anything else. My Dad, younger brothers and I could have used some help; could’ve used a break so as to rest, relax, go to a movie, go out to eat, anything to get away from the unrelenting caregiving if just for awhile. Sorry if this is rambling; but it’s sometimes hard to say how difficult it was and how alone we all were. Would have welcomed a helping hand.
Sue
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Dear Sue, your story reads like mines, except i was 13 when my mom was diagnosed, and only 2 little brothers. i love your story, it feel your pain, also isolated and struggling financially. just know that you did something amazing for your family. Love from South Africa, xoxo
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i really appreciate reading this. my fiance and i are now the primary caregivers for his grandma after the sudden death of his mom. reading all the things you’re going through and have felt was reassuring that i’m not the only one. thanks.
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I just discovered your blog while browsing my computer basically to see if anyone was out there that I could relate to- or that could relate to me. What I found was loving people caring for those they loved when life took them by surprise. The comments from your readers make me want to hug each and every one. We find our strength when we are weak. I blog at areumymother@blogspot.com
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Sara- My husband suffered a massive stroke at the young age of 32. It has been almost been 6 yrs since the rug was yanked from under our feet and our lives seem to be at a stand still. We still cry and want our old lives back! I’m not sure if my husband will ever accept this new guy he has become. He could have been nominated for father of the year before stroke and now he completly avoids his children. He once was a great source of strength for me and now he tells me that he does’t want to hear about it…he says he has enough problems of his own. He doesn’t seem to comprehend that his stroke has effected my life as well. Such a lonely place to be.
Amy
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Amy it is a very lonely place and the only advice I can offer is just keep swimming. My husband of 17 years was diagnosed with ms four years ago and this past spring at the age of 38 had a stroke. We have two young children and it does feel like your problems become insignificant but they aren’t. We are impacted as well.Also do you find that your friends minuscule problems seem so irrelevant. I hope that I am not loosing empathy towards others through this process. It is as you said very lonely. I’m normally a very positive person but I feel you understand so I don’t hAve to put on that face that I do with everyone else. Just keep swimming:)
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I am 26 years old. My mom suffered from a severe stroke a year and a half ago in Feb. of 08. Since then I have been living at home with her, being her constant caregiver. It has been so helpful to read the other stories of young caregivers. Through this whole experience I think “there HAS to be someone else that is going through this!” Like many of you have said, my friends are encouraging but don’t really understand what its like. I find myself being extremely jealous of them and their “care-free” lives, trying to remember what it was like when I only had to take care of myself. I am constantly stressed out and haven’t slept through the night since I can remember. She has a horn by her bed that she honks when she needs me to help her to the bathroom or anything else. Thankfully, I hear the horn much less than I used to, however even when I don’t hear it, my mind will play tricks on me and I will swear that I heard that deafening sound. I have an amazing boyfriend that I am so thankful for, him and my mom adore each other, however we are ready to start our lives and stop living on such a strict schedule. Mom’s 3 siblings are constantly criticizing me, rather than encouraging me which is unbelievably frustrating, considering that they hardly ever see her. I work 40 hours a week, on a 4 day, 10 hour schedule so that I have a “day off”, however that consist of taking mom to one of her therapies. I am contributing to half of the utilities and morgage and am constantly broke. I am constantly looking for light at the end of the tunnel but find it’s nowhere to be found. I can’t tell you how many times I have just wanted to run away. I love my mom more than anything, though and I could never do that to her. But I am so ready to be done. 😦
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I too have been faced with being a young caregiver. My father had a subdural hematoma and a stroke in july 2008. I was 21 and my older brother was 25. Needless to say we had no idea what was next or what we were about to face. I am still in school. I am ironically going into my last year of nursing school. I am also the caregiver. anyone who is a caregiver knows how hard it is to juggle your own life while being completely selfless for the person your caring for. I have done everything for my dad. I’ve given up dreams, and opportunities, and now it feels like my youth. strangely I’m okay with all this, as long as my Dad tries and puts in his energy too. But now he has just become lazy. He wants to get better but when it comes down to it i fight him non stop over small things that he needs. He is 80 lbs over weight because of eating what he wanted with the 24 hour live in i hired while at school. So clearly he is on a diet. Seems easy enough but when i cook him a nice dinner, he screams at me for a cheeseburger. When i say you can’t eat like that anymore, he fasts for 2 days out of spite. He recently cursed and screamed for no reason that im aware of. (probably just taking his frustrations out on me). after that he stopped speaking to me and treating me terribly. Throughout all this I’m cleaning and cooking and doing laundry. and to be completely honest sometimes I don’t want to put all of my energy in, if he won’t do anything to get better- when he can get better!
I think that hardest part for me, is knowing that not one day of his life did he take care of himself- and I can’t help but wonder why I am now paying for his mistakes? Why he hasn’t learned from his mistakes yet? And where do I cross the line?
Do i keep trying, even though it’s useless effort because he won’t help himself?
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I am a 48 years old woman, who is a caregiver to my husband, my adult son, and now my aging parents.
In 2004 my husband suffered a severe brain injury. My husband has seizures that are not controlled and severe short term memory and long term memory issues plus cognitive problems. Also, as with any brain injury that severe, his personality is not the same as before.
I have had the challenge of having a now adult disabled child (24 years old) with bipolar depression and early onset parkinson syndrom.
My parents in their mid 70s are living on our property, along with my husband’s parents (in separate housing). They have been a great help but my mother in law has been diagnosed with early alzheimers and now has cancer. My mother is “getting forgetful.”
I started reading this and now I know why I don’t talk to anybody about these problems. It sounds like a pity party. I am the healthy one and all my family is falling apart and I SHOULD be able to take care of them, but it does seem SO overwhelming.
But there should be more caregiver’s groups for caregivers of “younger” age. And I applaud and yet feel sad for all of you very young who give up so much to take care of those you love. You do what you must out of love for those you love and who need you.
But sometimes, it would be nice not to be need quite so much.
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My heart goes out to all of the caregivers young and old this is not an easy task but it is time consuming and so demanding. I too have been a caregiver of my husband of 35 years. He has had something Not totally sure what caused it, he has total disability of the cognitive type. Some have diagnosed him with dementia but certainly not your typical symptoms. I took care of him at home for over 18 years, so this started when he was around 40 and I was about 37. He is now in a nursing facility and I am not sure which is more difficult, having him home with the 24/7 care or having him there where I get to fight all the time about his care and then to live with the guilt of feeling as if I have abandoned him and being a quitter.
God bless each and every caregiver. NO ONE knows what you are going through unless they themselves go through it too.
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You have been through so much and been so loving and strong. None of us can judge what another person chooses and I am sure that you weighed it all carefully each step of the way. We cared for my mother for for years after a suregery gone bad that left her an invalid. It was a heartbreaking eye opening experience for us all. now I am the caregiver of my mother-in-law who suffers with Alzheimers. I don’t know whick is worse a mental decline or a physical breakdown. I have learned that we humans are not supposed to bear it alone. We need one another. Thanls for sharing. I share a bit on: areumymother@blogspot.com
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Very well written and incredibly heartwarming blog Sara. I just turned 26 and have relocated back to my hometown – 1,100 miles from where I was living. I just moved back about two week ago. I feel like I have lost everything at once. My grandfather (massive stroke), my partner of 3 years, a job that I finally didn’t dread going to every day, my independence, my cat, friends…
All of this to live with my aging grandmother. Luckily she is in very good physical health, but mentally she is beginning to fade and needs help with the day to day routine of paying bills, making doctor appointments, etc.
Deep in my heart I know that I did the right thing moving back to care for her. As sad and depressed, not to mention completely lost, as I feel, I know that my grandmother feels all those emotions multiplied by about a thousand.
So, I’m trying to stay positive and just take things day by day.
This blog was so helpful for me to read. Sometimes just hearing others’ struggles and realizing you’re not alone can make such a huge difference.
Thanks again for starting this website and I’ll check back soon!
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Do you do counseling in real life?
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Thanks for starting this blog. My heart goes out to all caregivers, for only those that have been through the process can begin to understand the amount of effort it requires.
I am on the old-side of young at 41 but have been a caregiver for over three years to my Mother. Prior to my caregiving with my Mother I helped my Mom take care of my Father during his fight with Leukemia for four years. Essentially, I spent a good part of my 30’s and now into my 40’s caregiving.
I have been to a caregiver support group, but as has been said by others, it was attended by people much the senior of me. These folks have already lived a good portion of their lives and have options such as retirement to take care of someone.
Another aspect I’m finding is unique is the relative lack of men in the caregiving role. While there are some men –kudos to you William, keep up the great work — most of the time it is women who give this great gift of time, energy, and emotion.
Financially it has been a roller coaster ride. I am lucky my father had decent health insurance. My mother still has insurance, but the expenses are amazing. Continued illness will exacerbate the resources of all but the wealthiest of families.
Remember caregivers, to smell the “flowers along the way”. Little events, such as slightly better health or the ability of a patient to self transfer or feed themselves can bring such joy! Rejoice in the small miracles and the deep connection you have nutured with the person in need of your care.
Also, don’t forget to share a portion of your experiences. Be moderate with your sharing, as to not overwhelm those that do not understand. Most folks will find themselves caring for someone during their lives, sharing experiences now will help others in their time to be better caregivers themselves.
Best wishes to you all.
Brian
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Great tips for how to cope with being a young caregiver. I can’t imagine how hard it must be to take on such tremendous responsibility at a young age.
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Melissa, Angelica, and Mistical AND William,
I absolutely applaud all of you for the caregiving you are doing at such a young age. You live it everyday and sacrifice so much, most of all your freedom and innocence, which every young person should have, but is quickly taken away the moment your loved one becomes ill or disabled.
William- my heart goes out to you and your mom. You are absolutely right- no one does know what you are going through unless you are a caregiver and have been through it. You are unbelievably brave, and I hope that when you do have the opportunity to be a teenager and go out with your friends- try to let go of the caregiving worry as much as you can. You deserve it and I know your mom would want to experience as much of high school as you can.
Keep in touch and I will email all of you privately to check in. Also try to get some local support- I am the state rep in Ct. for the national family caregivers association, and there are state reps in every state who can help you through this time. also the website has a ton of resources for caregivers, everything from stress help to ways to improve doctor communication. check it out at http://thefamilycaregiver.org
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Thank you, my experiences started at 12 when my grandfather was diagnosed with liver cancer and eventually ended up passing 6 months later, 4 years later my mom had a series of strokes, and just 7 months ago she passed (i’m now 24) and am left with her brother who is mentally disabled (brain damage, and cerebral palsy). The majority of my family and friends are in the northern area of the country and are really not that supportive of what I’m facing, I commute to a job that keeps me away for 14 hours out of the day and coming home, cooking dinner and then cleaning up is about the limit for me and i have to push myself to get to that point. Somedays, like today just feel impossible. I’m working hard at the career but, it’s getting me no where, working hard at caring for him but, no one understands what it’s doing to me and i just feel like i’ve completely lost myself and any near future chance to meet Mr. Right…..at 24 this is not what life should be about it but, it is.
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Thanks for sharing your experiences Sara. i just found your blog and will try to keep in touch for support and encouragement. I became a caregiver to my mother at age 26 when she was diagnosed with frontotemporal dementia. (She is now 63, physically fit as a fiddle, with the inability to empathize, see insight into her disability. She acts rigidly,compulsively, restlessly.) My mom is not married, and most of her family won’t assist with caregiving because they are afraid of the enormous responsibility of caregiving, mostly the unknowns. My mom lives with my husband and I and our 3 small children. I consider her my 4th child, but they contrast in that my children progress and my mother declines. You have made a difficult and beautiful choice in caring for your mother.
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Hey Sara.
It’s tough, trust me. I know, I’m sixteen and I have been a caregiver for my mom for over a year now. She suffers from a disease called encephalitis. For the past thirteen months I have been getting her to and from her bed, getting her around the house, sorting and administering her medication, and sadly, getting her to an emergency room when needed.
Surprisingly as a sixteen year old boy, I was in no rush at all to getting my drivers license. But after everything was said and done with my mother, its was practically a necessity.
I know its a tough thing to deal with, but you just have to get through it. Thirteen months ago I was the most immature little 15 year old ever imaginable. But after my moms first hospital stay, and the diagnosis was released I had no choice but to mature at a faster rate then any child should ever have to.
For a moment, I thought my life was over. I thought that if my mom dies, ill be crushed. And if she survived this, I would be stuck doing what I am right now. But the reality is, my life has just begun. I have lots to live for, but for now, my mom is my main concern.
I still put a lot of focus into my schooling and my job, but my mother is number one. Most of my friends have a hard time realizing that if I say i can’t go to the biggest senior party of the year, I can’t go. But thank god for my best friends, if it wasn’t for them doing what I am doing would be a hell of a lot harder. When I have to pass up the opportunity of going to a big party, my best friends head to the movie store, pick up a good one and come back to my place and hang out with me. I think the biggest problem kids are having, is that they just don’t understand. People can say they know what I have been going through, but the truth is that until you have been a caregiver, you really don’t know.
As I sit at the end of her bed watching the tears roll down her face, I feel this constant pain. Almost like I had just got shot through the heart. It kill’s me to see my mother like this, and I know its hard for any caregiver to see their loved ones in any state of pain, but its a reality we have to live with.
My mom was the most out-going, energetic, fun, loving, and caring person I have ever met. She has a huge heart, and always helped out whoever she could. Since she’s been sick, she hasn’t really been able to do any of the things she loves.
You just have to keep fighting, never give up, and most of all you have to stay strong. Not just for them, but for yourself.
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William, I relate so much to your experience! I was sixteen when I started caring for my sick mom and in turn, my family… that was in 2009 so we are approximately the same age!
I come across very few instances of caregivers who are my age sharing their stories and reading your comment helped me to remember that I’m not alone. Thank you for your positivity and kind words- I know they weren’t directed at me but I’m grateful that I found them four years after you wrote in! I hope you are still doing well!
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Hello William and Jenna!
Thank you for sharing your experiences. I was a caregiver at 17 myself and had to handle the whole show alone as my dad doesn’t live with us any more. She had cancer and I had handled the whole show alone, still do.
I want to share my experience for future readers of this post.
Though she is now out of illness, life can never be normal again, as this post points out. There’s always fear, protectiveness and spurts of panic when health drops a bit.
6 years down the line, after having managed to still keep my career and academics on track, I realised that I’m still reeling under the personality changes that came about from being the primary caregiver.
The transformation of my mom – the energetic woman and strong woman into what she is today is very hard to accept. But I am thankful that she is still with me as many others are not so fortunate.
I am finally beginning to accept that what happened is not something a normal kid, or maybe even a grown-up caregiver may go through. It’s done now and there’s no point thinking about it all over again.
I have begun to rebuild myself and am trying my best to be there for my mother, and make her remaining years beautiful, not let her sense any guilt or pain for having put me through that.
I have realised all this a little too late. (I still suffer bouts of depression, usually triggered by flashback dreams). Hope future readers will find this assuring – YOU ARE NOT ALONE.
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Hi Sara – Thank you for writing this blog! It was the first thing I’ve found online that speaks to young caregivers at all. I am single and 29, taking care of my ill mother who is in her 50’s, and trying to keep my career afloat. She has chronic liver disease which has been getting worse over the past 20 years or so. About five years ago she started requiring more help.. I lived in another state and she would come and stay with me for months at a time and then go home and be on her own for awhile.. about a year ago it became obvious to me that she needed to move in full time when she couldn’t find anyone to take her to the ER and her doctors were getting concerned looks when they heard she lived alone. Anyways I love taking care of my Mom! It is super rewarding. She also has told me that she’s so glad she has me, that I’m the only one she can count on and the only one that does things right. That second part might not be such a blessing, as it makes it hard for me to have any help, lol. I think often that I’m glad I am single with no children because otherwise it’d be super hard to help her. I would like to get married and I figure if the guy is worth marrying then he’ll embrase caring for my Mom and it’ll be nice to have the help. I would still consider having children at that point because they would increase the quality of her life. Of course this man has to support everyone on his income.. maybe I’m dreaming. Anyways what’s really on my mind now is how much work I’ve missed because I’ve had to stay home with her when she’s sick. Honestly even if there was someone willing to stay with her, she is so fragile and requires just the right care because something as simple as vomitting could be life-threatening for her. I find it difficult to trust someone with that responsiblity. My Mom actually has a chance at a normal life if she ever gets the liver she is waiting for.. and I feel it is my job to give her the best chance for that. Taking care of her is my first priority over my own needs and defineatly over my career. She of course feels guilty every time I miss work and insist I go sometimes even when it’s not a good idea. I used to be mad at my father for leaving us but thankfully I’ve gotten over that and consider it a priviledge to help my Mom!
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I am also a caregiver for my mother, who has MS. I am 35, but I’ve been at this for 5 years. I would love to talk to you more about your experiences and look forward to reading your blog. You are not alone. I love caring for my mother, but its a challenge. I am actually happy to do this at this point in my life, having seen older caregivers who lack the energy to keep up with the demands. As for a career, well, little by little I squeeze in more experience and education. Its not very different from people who have children. Would love to get in touch.
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I’d love to talk you more as well, Diane & Sara. I was in a similar situation with my mom. She passed away from Alz two years ago. It was a period of my life I wouldn’t take back for the world (there were so many wonderful things we were still able to do that a lot of folks may not realize), but yes, difficult and quite sad at times. My sister and I (we were in our late 20s/early-mid 30s) when our mom passed away talk about how our age helped us with the physical aspects of caregiving. It reminded me of how important having a strong, healthy body is. If you get a moment, I’d love to talk more!
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Hi! I am a Korean who is studying in Philippines. I can’t tell you many things but I can tell you this one only. “BREAK A LEG!”
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At least you had your 20s to at least experience a career. Try having to be a caregiver at age 18. There are over a million kids out there under 18 who are caregivers.
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T. Being 2 years apart HARDLY makes a difference-pleaze! I had been at it since I was 6-9. Then in my 20’s full time at it baby. Im 34 now! I was paying bills and making mashed potatoes and sifting through empty cupboards for what else to cook while you were frolicking around the house somewhere. Even younger then that I had to flag down strangers to give my mom and a ride home on a rainy night when I was 5 years old so don’t sit here and say you had have it worse when we all relate to one another. Because you will not win in the one upping game because I got you beat by miles yet it is not I who is sitting here jaded and wondering why I got the short end of the stick-yet only two years apart…smh these days at people….
Sara I really love your blogg and everyone on here who commented just hope T. gets a better attitude about things-yeah it sucks big time.
Im in desperate need for support. Im on the verge of tears right now becoming one heck of a waterfall. People judge why do you get married when in school?Well, I was half way through and at 31 I felt mature enough in my ways to if it was a good move. 3 years later we are doing great. Still in school and I do have a brother only 1 yr. younger who helps but not merely enough! And having a pet doesn’t help. I have the heaviest shoulders I have ever felt-even as a 6 year old trying to get dinner cooked, bills helped payed and homework started lets alone finish. I knew this was my cross from the very beginning. When I learned how to talk as a little girl I had a hunch and accepted the challenge but man..its so tough. I am on the verge of being the first female with a college degree if not the second in my entire family! I feel hopelessly overwhelmed with projects for school and then work on weekends I look for days off to get mom out for fresh air or shop..I call it social therapy for her. She is young still so I should NOT be complaining. It will only get worse should she get sick. Which could happen in the next 5-10 years….I am looking for support groups of any kind and read that local groups consist of older people who don’t really know what its like to be younger, to have things on your plate, and take care of a parent who is needy, emotional and clingy yet a good friend all at once. UGH lol UGH! I had saved time thnx to that comment to go to local groups so maybe online groups maybe better? I need friends like all you :…) (eyes rolling to not shed tears) its thanksgiving eve and about to go to moms to eat JUST SO she won’t feel lonely er left out thanksgiving when she is by herself-again. xoxoxo
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T. I didn’t mean to say you have a bad attitude or that you are jaded, I was hasty. It was my first impression though. I do relate to you if that means anything. I do get it. I had no childhood and maybe feel jaded myself and seen that part of me in you but i had let it go and moved on. Life does balance out.
Sara-
Is there anyway possible to develop a way to edit or remove our comments? Can you look into that at all. Its the holidays and I get it. But after the holidays would it be possible to get an edit/delete comment option next to our comments? Thank you so much
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Sara,
I sense a little of what you must sense, but far less, I’m sure. I’ve been caregiver to my husband who suffered a massive stroke at age 47. It’s been about 4 years now and he continues to struggle with aphasia. Because we are so much younger than most in our situation, we don’t really fit in either. Because my husband can’t hold up his side of a conversation, we are not building friendships with couples — other than family.
Everything changed in a moment for us too…home, city, church, jobs, career, relationships, roles, dreams…all the things a sudden health change does not take into account.
Since April, I have kept a stroke blog too, but from the perspective of a wife/caregiver. Mine too, is a supportive and informative blog. If you wish to know the link it is Post Stroke.
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Sara, glad to getting to this blog. I am an exact situation like you. Unfortunately, my husband had suffered a massive stroke, in which our lives aren’t the same. I am 47 years old and I have been taking care of him about 9 years. I looove him so much, I do everything for him and what ever he asks for, but unfortunately it is so said losing that intimate connection that we had before. I had to learn to adjust to it and do the best for him and lastly to myself. I certainly will check out your blog, too. take care.
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Thank you for your site. I’ve been looking for some connection to other young caregivers–not much out there for those of us who haven’t even started families yet who are caring for our parents.
At age 32, I made the decision to move my mom from New Jersey to Rhode Island, to live with me. I have three older siblings (one in 40s, the others in their 50s) who were either unable or unwilling to care for my mother, who had been living alone until she fell and was stranded on the bathroom floor for at least 3 days.
My fiance graciously agreed to the plan, and we rearranged our lives to make it happen. I said it then, and I’ll say it now, it has been a dream come true to have my mother living with me. But, at a time when I was anticipating my wedding and starting married life, and thinking about changing careers and going back to school, I was not really emotionally or physically prepared for the role of caregiver.
It’s four years later, and we did get married, and my mom was a the wedding, and that was the greatest gift of all. But typical newlywed plans are not really in our frame of reference right now, i.e. travelling, kids, etc.
Your site has inspired me to start the blog I’ve been meaning to for so long now, for RI caregivers. Hopefully I will make the time! Thank you.
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Sara,
Thank you for sharing your experience. I am sure it will help others. I was not a full fledged caregiver, but a well spouse to my late husband. He had Lupus and ended up needing dialysis for 2 years and was plenty sick for the 6 years before that. He wasn’t completely helpless, but I felt like a caregiver in many ways. All of this was during my early & late 20’s. It felt like our lives were on hold. Friends got married, bought houses, went on vacations. I was stuck at my job for the insurance. Even the simplest things required great forethought, would something work logistically? Like a vacation or would the stress of it all be not worth it in the end? My husband died when I was 29 and I have since remarried, but it has shaped who I am and how I want to spend the rest of my life (helping others in similar situations). I felt so alone. It would have been so helpful to me to have discovered blogging during it all, but it was in it’s infancy. I am so glad you have found an outlet, an audience and support online!
Andrea Crisp
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Andrea, your blog was written so long ago. I’m writing in the hopes that you or anyone else in this similar situation is reading this. My husband has a brain injury after suffering a cardiac arrest at the age of 34. It has been 4 & 1/2 long years since this happened and I’m struggling to find people I can relate to. Although I am not in my 20’s, at the age of 38, I’d still consider myself young to be a caregiver and I’m struggling tremendously. I can’t find people my age to connect with. Most support groups for spouses are for people well beyond my age group. Are there any younger people experiencing what I am going through? Although my husband is right next to me I feel so alone. It’s like I’m mourning his death even though he is sitting next to me. The person I was left with is not my husband. I don’t have a marriage I’m just a caregiver.
Need support
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Hello (perezm4), I have been a caregiver about 9 years for my husband due to a massive stroke that he had suffered. I was 39 years old, so I totally relate to your situation. I, too, certainly think that 38 of age is young to experience such things. Hang in there and please feel free to email me.gyarmathye@aol.com
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Hello to everyone that has responded. Thank you for your responses. I sent an email to you if you left one. No one will ever understand what we go through his young caregivers unless you are in our position. Maybe we can be each other support when we need it. Some days are so tough. Thanks for your responses.
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Hi – (perezm4) and (Elizabeth G) I just happened to stumble across this page and saw your recent posts and felt like your were totally speaking for me so I needed to message. My husband had a massive stroke almost 2 years ago. I feel like I am also young (43) and haven’t come across anyone that I can relate to or understands at all. Thought I would reach out to either or both – my email k.fawcett@charter.net
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I am 39 and caregiver to my husband now for over three years. He can no longer work. Our children are 3 & 5. I’ll never be the mom I could have been or was before his illness took over. It’s hard. Very hard. But I have to keep going. We are always at dr appointment. I am missing so much time with my boys. Very precious time. I’ll never get that back.
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These comments really resonate with me! Im 31 and have been dealing with my partners health issues. Would love to be added to the email exchanges. Marvipruitt@gmail.com
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I’d love to be on the email thread as well please as a 32 year old caregiver. I’ve been in this role since 2010 for my mom. During 2013, I was the primary caregiver to both my parents (mom has Stage IV COPD, dad had Stage IV Pancreatic Cancer). We lost my dad October 2013, so now it’s just back to my mom and I. My few friends are very supportive….but they just don’t “get it”.
Email is j_botta83@hotmail.com
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I’m a young 68. Healthy and enjoying retirement. My husband a yr older was diagnosed with stage 4 lung cancer in late 2014. In feb he then had a brain bleed that caused a stroke. He is in a wheelchair 24/7 can’t be alone. Only has the use of right arm so it’s me that’s does everythg for him. I feel for me snd you too. After 49 yrs married he is everythg to me. God bless! Stay strong…best regards, jude
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I do agree that taking care of a loved one is so stressful and a whole new experience. I had been a caregiver for the elderly for over 20 years when I was called home to help care for my 81 year old mother. SO many new feelings of insecurity and being over-whelmed were new. I had never had that with any clients before. I guess when it is your OWN PARENT the feelings are just raw and so over powering. I know it has taken me years to come to terms with the responsibilites I have in her care and how I can cope giving that daily care.
: )
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Hello Sara,
Is SO wonderful, and so sad at the same time, to read your blog. You have amazing insight that will help many. 🙂 I have been researching writing a blog as well, as a year ago I was completely lost with no support, wondering how to best care for my mom.
I am an only child as well and at 29 I gave up everything (living in London, career, idea of my own family… maybe some of my sanity!j/k) to take care of my mom 24/7 who had no health insurance. And boy, trying to get help from the state and hospice was a whirlwind of legalities, hidden expenses and so many unexpected turns. I’m still dealing with all of that! I had to learn on my own how to be a nurse… sadly a hospice nurse. And not a very good one at that as I am afraid of needles (thank goodness Mom hated them too and refused them) and not very good with bed sores, now that I unfortunately know what they are and how to prevent them.
Before mom went unconscious she said to me “Kiddo, you are the only one I have. I’m sorry we are on our own in this, but no one could do a better job than you.” I haven’t read enough to know yet if you and your mom are able to communicate with each other yet, but if not I am sure she is thinking this about you.
Best wishes xox k.
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Wow, you so beautifully speak of your experiences. Thank you for sharing your insights and struggles. I also was a caregiver for my grandparents at a young age, but not the intensity that you talk about. It was because of what I went through with my grandparents – the unknown of the medical profession, how to deal with hospitals and rehab and professionals in aging, what resources were available, etc. etc… that I became a geriatric care manager and now developed a Nation online Eldercare directory, http://www.AgingPro.com. I didn’t want other caregivers to feel the aloneness and helplessness I felt. Maybe knowing of the resources and professionals that can assist, when you need it, can help take some of the pressure off you. Check it out! It’s free! Most of all, take good care of yourself, so you can help take care of others!
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