Being a longtime caregiver for my mom with Alzheimer's has made me change my opinion about what kind of care I would want should I develop this horrible disease.
My mom was my best friend for as long as I can remember. For me, there wasn't even the thought of sending her to live in a NH. It was just always known that I would take care of her to my dying breath if that's what it took. As a caregiver, despite all the terrible stress and exhaustion, I think most people feel that it is right to take care of their loved ones (at the very least). Many of us couldn't have it any other way.
My mom is gone now but living through that has made me completely change my mind about my own wishes. All of us know that there is a chance that we will get this disease. But if YOU get dementia -- what about you? Who would you want to care for you? Are you concerned? Have you made arrangements? Has knowing the progression, experiencing personal losses and giving your life over to caregiving colored your stance?
Just curious...
Hugs to all
I have a deal with my son.;)
My SIL has terminal cancer. Even she said she's thankful she won't have to deal with Alz. I think that says it all.
There's no way I would want my children to physically take care of me! I want to be their mother until the day I die and I've seen firsthand how AL enables that.
I'm having the "talk" with my daughter this weekend although I don't think she would ever even think of caring for me should I get this hated disease. I will extract from her a solemn promise that she will NEVER, regardless of who it is, care for a family member affected by dementia.
I have written a will and executed a DNR. I have made arrangements for all my furbabies to be cared for after my death. My mom and I did all these things at the very beginning of her diagnosis of dementia, long before it was little more than a bother. We've had a lifetime to talk about our wishes and I knew what hers were. Despite all our planning, the end of her life was a painful nightmare.
Should I be one of the damned, I will end my life shortly after diagnosis. Not because of depression. Certainly not out of desperation. It will have been a well-thought-out, intelligent, conscious choice. I will put my ducks all in row, sell as much as I can, update my will and go.
Someone asked what they do with you if you have no family. Go to any locked Alz ward in any NH or AL facility and you'll find out quickly and painfully. Many of the patients on my Mom's ward had been there for 12 or more years and had not had ONE single visit. Even those with huge extended families. The aides and nurses told me stories... heartbreaking, painfully detailed stories of how their families came in with them when they were admitted and then never saw them ever again. The worst part? The majority of them were lovely, loving, funny, wonderful, demonstrative, silly, affectionate and sooooo easily loved. I fell in love every moment of every one of the many hours I visited.
They were forgotten. And sometimes they knew it.
annet, you asked what about me? There is no one to care for me. Even if there were someone willing, knowing what I know about Alz care, I would not want or allow that to happen. My decision was made quite some time ago.
That is not to say that I would change having taken care of my Mama for anything in the world -- it is what I HAD to do and I wouldn't have had it any other way. I loved her beyond a normal Mom & daughter relationship. She saved my life a few times and she was (and will always be) my lifelong best friend. There just was never a question but that I would be there for her but it has bankrupted me emotionally, physically, financially.
When the end is near, I will not hesitate. I will go peacefully and courageously by my own choice and my own hand and be a burden to no one. I hope that doesn't sound sad because it's not meant to be. It's just meant to be my own reality because I will not linger painfully. All I can do is hope that God will not judge me for a decision based on my love for those left behind.
Hugs to all the caretakers, kisses to those affected.
You're all amazing, courageous and exceptional.
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