PART ONE of MY STORY
Hello Caregivers!
Phew- I don’t even know where to start. ok, so my name is Sara. I am a 32 year old caregiver to my mom. I am starting this blog because I myself have had a really hard time finding any great online support out there for caregivers. I would search and search and find forums that were so scarce – it looked like an online ghosttown! What is going on? I know there are soooooo many of you out there. So with that said I hope you will find me. I have been through it so I want to help any caregivers out there that I can AND I know I will learn from you guys as well.
So, onto my story…. My mom had a massive stroke almost a year ago. I was living out west in Arizona, working, dating- living and loving my life, then….I got the phone call. Yeah, you know the one. Like me, I am SURE you still remember exactly where you were, what you were doing, and how in seconds- literally- your entire world fell apart. I swear, I can still feel that feeling through my whole body when I think about it. So, there I was, in a state of complete and total lunacy- getting on a plane with one suitcase- home to Connecticut. Guess what? I never went back.
I walked into the hospital and was greeted my mom’s lovely (sarcasm) social worker who tried to explain to me why it took her two days to contact me. Keep in mind, I am an only child and the only person, outside of extended family, in my mom’s life (not to mention that my phone numbers were in my moms purse- duh!). This was my first contact with anyone in the health profession and oh brother…was there more to come. I walked into my mom’s room to find her paralyzed and completely unable to speak. And then an odd thing happened… I didn’t fall apart- not yet anyway. This was really odd for me because I was… what shall I call it… a bit of a drama queen 
I was always a very emotional person and most of the time, the first one to cry (and laugh or get angry, the list goes on). Well times have changed. My protective mode kicked in to hyper-overdrive. And frankly, it hasn’t gone away.
From there, my mom was then transferred to a rehab hospital, where she stayed for more than 2 months. I have to laugh a bit here, because I seriously thought the people at the hospital were crazy when they told me she was going to rehab. Maybe its just me but I thought rehab helped with… other problems- not a stroke! The rehab hospital turned out to be exactly what she needed though because they put her wheels in motion- literally! At rehab, my mom had a team of people working on her “therapy” which included doctors, nurses, aids, physical, occupational and speech therapy. I went to the hospital every single day. And take it from me- I would’ve taken some days off if I had known that I wouldn’t be able to once she came home.
Believe me, there is much more of my story… I will continue to blog about it and in the meantime- if you have any questions or need advice- I would love to hear from you. I hope that this can become a place for caregivers to support and learn from each others experiences. Hang in there!
~Sara
THANK YOU. I started one of these blogs and finally deleted it because of lack of people to keep it going. People and their support and opinions and help are crucial to keeping one going like this. Been a caregiver for over 20 years and now caring for my mother who is 85 and in slow kidney failure.
Slow because she has only one kidney and is in stage 4 out of 6 of complete failure. My father went this exact way and so we know the road all too well. I am writing a private blog on spaces for some friends who I know and trust who are helping me deal with MOM and her problems. CARING for your own family member is SO VERY MUCH HARDER than caring for someone else who you are not connected to. SO much more to contribute.. will return.. take heart there are tons of us out there we just didn’t know where to GO.. .. I shall return you can rely on that!!! : ) CAROL
Carol-
Sara
Thanks so much for the comments you left and sharing your experiences. So sorry to hear about your Mom and Dad. It sounds like you are doing an amazing job at making your Mom as comfortable as she can be right now. It’s great that you have friends who can support you, especially if they’ve had caregiving experience themselves. Its so important to find others who can relate- which is one of the reasons I started this blog. My friends are amazing but because I am young to be a caregiver, they have (fortunately) not yet had to go through this. My thoughts and prayers are with you and your family. I look foward to hearing more from you!
Dear Sarah,
I remember the day it happened to me – September 14, 2006. Before that day, my life had been all about my husband and his liver condition. Diagnosed in 2001 with hep c from a ski accident, tried Interferon for 6 months, that beat him up but did not clear the virus. Recouped from that and tried another type of interferon – didn’t breathe for about nine months until they took him off because he had gotten too sick to continue. Waited, waited, got on the list to get a transplant. Waiting to get worse before getting a transplant and getting better. But he could talk then, and we were in it together, and we had hopes and dreams of life after transplant.
Sept 14 came home from work and that was that. We live in some sort of parallel universe now. People are out there beging caregivers, in a crazy world where we just love and love and sometimes get something back from our loved one, and sometimes just don’t. Other caregivers know this world – thank you for reaching out and giving words to all of this legal, blame, medical craziness. I’ve never liked to write, but now it is saving my life, and giving me energy, reframing my strenghts, dealing with my emotions. Thank you, thank you for expressing yourself so beautifully that it opened up something in me and let me let it out…
hi caregivers out there;
remember that no matter what the days brings to us,,, you and i are never doing this by ourselves… i encourage all to follow my lead when it comes to stress reduction… if only for a half an hour,, place music in your ears, and walk,,,, and then do it again if you have the time. listen to music, look upward and see the sky, and look at the grass and smell the flowers,,,
in the early morning,,lay quiet for just a few minutes, stretching in your bed, and thank god you are here today,,,
i am not a poly anna, but i have tried it all, and simple things bring the most rewards,,, also,, ask a friend over for a simple dinner to just cook for someone who would love to share a meal with you and may be even a class of wine.
think about the others who do have a more difficult time with those they love and be grateful, your situation is not that hard or sad. if it is,,, keep thinking that your love and efforts are worth the peace you will feel some day. when those days are here and nothing works,,, i say,,, take a huge yoga breath, and just sit down where ever you are and make yourself just sit still,,, i know it is hard, as it is almost imposible for me, but i have been doing it,,, it works,,,
so enough of my thoughts, just know that i hear you all and share your kindness and caring..
have a wonderful new week coming and look to the future for more peace..
Sara,
I just found your blog and enjoyed reading your story which is fairly similar to mine except I take care of my god-sister. She had a stroke three years ago and has not been able to live alone since.
It looks like you started your blog about the same time that I started mine. I will check back periodically to see how you and your mom are fairing.
@Susananne,
Thanks for the advice, I have a hard time relaxing.
Hi Sara
Am caregiving for my father…he’s 68 (will be 69 in April) and is showing signs of Alzheimers or some type of dementia-like illness. So I’m gearing up for heavier duty caregiving and building my support team
I will be 40 in February and I’m an only child. Like you I’m also single (never married) and don’t have kids. I actually feel blessed about that because Dad is going to be a challenge and I don’t know how the people in the generation ahead of ours balance caring for a parent and also keeping their own little nuclear (ie spouse and kids) families together. The advantage to fewer people in your family is you can create one from friends and people with specific helpful knowledge & skills where every member acknowledges your parent as they are now and doesn’t live in denial about how they were and get upset because you can’t focus enough on them thanks to your parent’s new reality which like it or not you share.
I came home in 2003 to be with my mother who was recovering from breast cancer (she was slow to get through reconstructive surgery, kept missing out on studies for the various types of implants they now use). In 2005 she died very quickly in a freak car accident (I was there to (sort of…your brain can do amazing things to protect you from trauma and being able to recall everything perfectly, thank goodness!) witness it (she died within an hour from massive head injuries) and I went through a bout of grief, survivor guilt and oh yeah PTSD (everything was very psychologically and emotionally numb for me for several months after the accident rather than the kind of PTSD you hear about where people are tense, jumpy, can’t sleep, etc). I guess you could call me a survivor.
Since Mom died I have done Dad’s laundry, cleaned up around the house, done some of those things men of his generation (World War II babies) have never had to learn to do because they went and got wives for that! My male friends joke that that is what I need: a wife. But actually I find I need their sense of humor more than I need another family member and since they get me, I’m keeping them.
Anyway just thought I’d pop into the comments section here and say ‘hi’ and ‘no you’re not alone, there are more caregivers in our generation than you might realize even if we don’t fit the common perception of who a caregiver is’. While I may have a few years on you I have a feeling you’re further along in the caregiving journey than I am. Maybe we can learn something from each other so I hope you keep blogging when you can
I tend to use Twitter as a stress relief and type up short tweets when something about Dad’s situation strikes me. Obviously I can’t talk to him about his condition (damned stupid disease!) but I find it therapeutic to let loose to no one in particular about what I’m thinking or feeling.
You can catch the occasional caregiver/Alzheimers/dementia tweet at
http://twitter.com/vdovault
Anyway I’m pulling for you so hang in there Sara.
Sara, congratulations on finding the secret to a successful blog. I am new at this and would very much like any tips you have on how you got yours done and how others are finding you. I just created my own blog for caregivers because I can speak very knowledgeably of what people need to know when they cannot take care of their loved ones themselves and have to get help.
I work for a local hospice so I have seen the whole scenario from the time a parent or loved one is diagnosed with a serious illness….not just cancer…but Alzheimer’s and other end of life diseases that eventually require 24/7 care.
While many of us worked for years to take care of our frail loved one, we also had to eventually return to work to support our families. That is when it really gets tricky. Finding a good private caregiver or a well established residential care facility can really be a challenge. And for families who think they can rest once mom or dad are finally placed…guess again.
Anyway, there is much I have to add to the conversation. I don’t know how you will find my blog but would love for you to follow me on Blogger at caregivingsos.
What I have learned is not in any of the text books and can help people when they realize they can’t do it all and have to depend on outside caregivers. Any ideas you have for how my blog on choosing caregivers…what you need to know…would be very helpful.
In the meantime, cherish every moment you have with you mom. I have lost two…but I never regretted the times I took meal over to them…even on my toughest day at work. Those are the things we hang on to….that live in our hearts…long after our loved ones have completed their journey.
Be Well
Kathy