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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

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I would want to be put out of my misery. Do you remember when Alan Alda was on ER. He had Early alzheimer's. He said the hardest part was deciding when to kill yourself. Too early and you miss some quality life....too late...you forget to do it.
I have a deal with my son.;)
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IF, and that's a big IF, I choose to deal with this disease, I do NOT want my family taking care of me. Put me in a NH or somewhere. If I choose not to go down this path, they won't have to worry about it. I've already discussed this option with my husband and my daughter. They understand my fear of Alz. I've watched 3 generations, including my dad, die this way. I'd rather get any other disease than Alz. My 20 cousins and I wonder when one of us is going to get it, especially those of us whose parents had it. It's gut wrenching.
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.
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No question in my mind. Put me in a nursing home. I don't want to "do this" to anyone.
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What happens to you if you have no family and you get Alzheimer's? By the time I am old enough, I will have no one left to take me in. I am unmarried, my brother is not able, and I have no children. Since my grandmother died of this disease, and my mother looks to be on her way to getting it, this is a real fear for me. Probably I will just accidentally set myself on fire, or something! Seriously, what do they do with you? Just wondering...
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Once diagnosed, I'd immediately stop any prescription drugs I might be taking (like Lipitor, blood thinners, etc, etc). I certainly wouldn't take Aricept or any of the other new ALZ drugs.
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.
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If I am diagnosed with Alzheimer's and I am still able to understand what that means, I plan to take up extreme sports like bungee jumping. My Mother had Vascular Dementia AND Alzheimer's ; she was incapacitated for 10 years. That is no life for anyone.
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Four generations of the women in my family have had dementia, so my chances are not so good. I am 70 years old and live alone in an apt. complex for the over 55 and disabled. Other than pain issues, I am healthy. The pain prevents me from many activities. I still drive, but constantly worry about when a 'spell' of dementia may come on. How do you know when these symptoms strike? I have 4 sons, but only 1 is attentive. He sees me every week. Another son, is semi-helpful. I read about the signs of dementia, and look at the piles of papers that need filing, or tossed. The laundry piles up, and I stress over it, but do nothing about it. How bad does it get before help is needed? I know my son would probably take me into his home as they have no children. Then what? I feel that when I am no longer 'me', I am gone. Just a body with no purpose. When that happens I want to 'die', in fact many people commit suicide at that time. Who do I want to take care of me? An overdose of morphine. But who does that for you, legally?
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Donna, thank you for your insights and answers. The one item I may have missed was when did your mother, herself, realize she was in the state of dementia? (or does she, at all?) Did she ask you what was wrong with her, or ask you to help her when she was over burdened with paperwork? I know it's a slippery slope to approach the subject with a parent, and many parents won't or don't know how to ask for help without feeling 'less than' capable. The dementia, which may or may not be the beginning of the 'Big A', as you know comes and goes, so may be difficult for the parent/caregiver to know when the elder is in a lucid state. The medications I take for depression, and pain cause me odd thoughts, but I am afraid to admit them to others. There are so many interactions and side effects I often question my thinking more than others. The care I would want would be a careful monitoring of those drugs. I have also been encouraged by my 'helpful' son to simplify my life, and try to be consistent , even if it takes a huge calendar to remind me. Being lonely will bring on 'plots' for attention as well. So much to say, so little electricity. Best to you. '42
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Long term care insurance is definitely the way to go if you can afford it. The time to buy is middle age, as it becomes more expensive the older you get. Unfortunately I have never been able to afford it myself, but I learned so much working in the insurance industry for so many years. Even if you buy in at an older age, if you can afford $4000 a year for the policy, it sure beats $4000 a month for the NH with no policy. In addition, most LTC policies cover in-home care at the same benefit amount per day as the facility benefit. This allows the elder to age in place at home as long as feasible. There is also a newer development in the industry, whereby you can utilize the cash value in your life insurance policy to pay all or some of your LTC policy premium. This is huge - talk to your insurance agent!!
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Wow, what an eye opener this was. I hesitated to voice my own opinion, not wanting to influence or leave myself open to criticism that life is a gift, no matter the quality.

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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