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.
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!
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.
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.
: )
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
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.
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.
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.
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!”
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.
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!
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.
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.
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.
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
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.
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
Do you do counseling in real life?
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!
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.
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.
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?
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.
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