If you develop dementia, who would you want to care for you?

Thanks for the reminder to get my ltc going. :) As others have said, I want them to remember me with dignity and independence.

This thread had just left me so so sad. About six months ago my MIL died at age 93, with Alzheimer's, and as far as we know, from it. She had been in relatively good physical condition until about a month before her death, but her dementia had been increasing exponentially over the past six years or so. I can come up with no good answer to this question. I am certain that because her mind was going/gone, she did not suffer less, emotionally. She seemed to me, on a regular basis, to be acutely aware that something was wrong. Even though she took medication for anxiety and behaviors related to the disease, they didn't totally relieve her anxiety, nor eliminate her delusions, paranoia and despair. She had a very peaceful and comfortable death, which I think she had been wanting for a long time by the day it arrived. I cannot imagine what I would do in the same condition. I think I would want the right to terminate my life if that could be done without putting anyone else at risk. I would hope those I left behind would understand. This is such a horrible thing to ponder; no wonder there is so little discussion about it.

No doubt; please put me in dementia care facility. I have LTC insurance and I've made wishes known to my husband, children and friends. I DO NOT WANT MY CHILDREN or their families DEALING WITH THIS nor sacrifice their quality of life to care for me. I do not want my husband burdened with my care once it is too difficult. I want him to be able to live life to the fullest without guilt, or exhaustion of my care. My plan is LTC; assets, then medicaid when the funds run out.

Folks this is a reality as medical science outpaces our mental capacities as we age. The medical community can preserve our physical health and keep us alive along time; but not so with our mental health for the majority. I pray that I will be one of those lovely exceptions where I'm "still with it" til the day I die.

Before answering your question, I need to say that taking care of a loved one does not ONLY mean living with them. There are many of us who are completely entwined in our loved one's care even though they live in a memory-care residence or nursing home or even in their own homes with outside care. That being said, I would want to live in a place like my mother lives in, a memory-care residence that takes care of my basic needs and offers activities and programs suitable to my abilities. I would never want my children to sacrifice their lives (or their someday families' lives; after all they are only 14 and 8 right now!) to care for me in those most basic ways. I would definitely want them to be involved in my life and to visit and take me places and include me in their families' lives when appropriate.

Im taking care of my Mom right now and although its hard at times, I wont put her in a home. She wouldn't put me in one.. I don't have kids so its a no brainer, I have to go in a home. O well.. I could easily take a bottle of sleeping pills and go that way. Care homes don't care for you that good. You will get rashes from your diapers. There is not enough nurses to keep an eye on you every time you have to go..

I don't know what I would do... but perhaps I should start to think about it.

Interestingly both of my parents, of sound mind until they died... fortunately, always, always said they did NOT want to live in an NH. I cared for them both. It was difficult, but OK... although I'm still struggling to recover. I do believe they were fearful of the possibly poor treatment and giving up their independence...

I am trying to eat right and exercise and hoping to follow in their footsteps. They took accountability for themselves financially and were only ill for a very brief time, fully insured, before passing away.

I guess no one can know for sure and I will try not to be a burden on anyone. :-)

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.

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.

I would not want my family to take care of me. I would prefer to be in a nursing home.

Hi Petunia,
That's my case in that I have no children, and no long term care insurance, nothing. So, if I get it I would have to side with Alan Alda's character and try to split the difference between remembering to do something about it and getting it done before you don't know any better.

I have an ocean going trawler and have always thought that I would take her into the middle of the Pacific and if I forgot why I was there the ocean would remind me.
When you work on a boat sometimes it occurs to you that you just might be working on your tomb.

Good luck to us all.

lovbob

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...

I have also changed my mind in respect to the old question - would I rather have my mind or my body go first? My mother in law's two sisters died of advanced Alzheimers and she was absolutely sure she was next. For the past 35 years or so every little thing she ever forgot or misplaced she was certain was the 'sign' that it was coming. She is now 93. She is incontinent, has become wheelchair bound because of two hip breaks due to falls, lives in the most miserable, smelly place where most people DO have Alzheimers (she thought if her sisters could live/die there she deserved no better). She has nobody to talk to and the food is so awful all she wants is sweets and junk food. She was a force in her younger years and, determined to call her own shots and make her own plan, ended up in this hell hole while we presented other options to her. She has a very slow growing lung cancer that the doctor says will not be the thing that kills her.
What I have learned from this is that if I had my druthers, I would rather my mind go first. I can't think of anything worse than knowing how awful the circumstances of your life are in this situation.
Being a Christian of the belief that it is not up to me to decide when I go out, offing myself is not an option. My husband and I have saved and invested as wisely and carefully as we can so as not to outlive out money, but especially these days, who knows. We can't control everything. We have six grown kids but of all of them - and I am not saying they are not good people - only one and his spouse are the ones we trust to 'care' for us in old age. That means to us, trusting them to do what they need to do after all of our preparing and keeping them in the loop about our desires and wishes have expired. I sincerely do believe it is critical for a helpless patient to be monitored and visited constantly. Even the best of places don't do the best jobs in the world, admittedly, as short staffing is a chronic issue. So family needs to be involved. But I would never guilt any one of my kids or my husband into 'never take me out of my house' or 'I would never go to a place like that'.
My own son, at 23 developed Type 1 diabetes and at one point was very ill. He made me promise him that I would never insist that he go on dialysis; he said he never would want to live that way. So at an early age in his life, we had very frank discussions about honoring each other's desires of what we would want if a 'what if' scenario came about. Happily it is ten years later and he is doing well. Married and expecting a child. But we have talked about how we would honor and care for each other as family members for a long time and none of us wants someone to suffer 'proving' they are a good mom, dad, or child. But we do count on each other to oversee things in the eventuality that we need support or to make sure a medical facility is doing their very best and is being accountable.

My Dad has Alzheimer's...my husband's Mother has Alzheimer's. We always joke that we'll both get it together so we won't know the difference as to whether we're normal or have Alzheimer's, and that we'll take care of each other together that way. But who knows what will happen in life? We all have the best laid plans and then things happen that we can't control. I watch my Mom (83) taking care of my Dad and know the trials she goes through, even with me and my husband right next door. My MIL has in-home care in two shifts, day and night, with my SIL taking care of things for her as my FIL passed several years ago. Looking at both of these...I'm not sure which way I would want to be taken care of. I think many times that people are on the right track when in comes to taking ones own life in such end of life scenarios. Maybe just hike up into some remote mountain area, like some native peoples used to do, and let nature take its course....

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.

I would take my own life as soon as I could after hearing the news. I would never want to go through this horrid illness nor have my loved ones have to see me in it or be around me while having it.

I think I'd rather just be in AL or a NH so my daughter wouldn't be burdened. I'm sure I'd be lonely during the times I was lucid, but I would hope that I could remember the time I was caring for my husband and how awful it was for me to be alone and isolated. Maybe in AL or a NH there would be other people to talk to and keep me occupied so my daughter and her family could go on with their lives and visit when they could. She and my son-in-law are in the military so they couldn't take care of me anyway. They move too often. It's OK. It has to be. I just pray that the Lord will spare us from this decision.

I may as well check myself into an assisted living center, because I KNOW my daughter won't take care of me. I know she loves me, but she has too many other things to deal with - like herself, the dislike of her job, exercising. . .sigh.

No question in my mind. Put me in a nursing home. I don't want to "do this" to anyone.

I never really thought about this even though I do have a high risk of this disease, both my mom and her sister passed from it. I do worry about it and is always in the back of my mind, especially when i do things without being aware that I did it or forgetting something it does scare me. I do have all my funeral arrangemnets done and out of the way so that there will be no burden on my children. My youngest son always says that he will put me in a home, my daughter the eldest says no way and that leaves my middle son who is quiet and don't like to think about it. I do have a DNR in place because I don't want to be kept alive on a machine and prolong their suffering. But now you have opened a whole new can for me, I have some thinking to do while I am still able. Thank you for the insight. Take care

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.;)