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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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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
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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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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.
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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.
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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.
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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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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....
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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.
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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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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
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I would not want my family to take care of me. I would prefer to be in a nursing home.
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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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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. :-)
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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..
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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.
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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.
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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.
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Thanks for the reminder to get my ltc going. :) As others have said, I want them to remember me with dignity and independence.
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what about you Bodybyte?
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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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My husband and I have purchased "long term healthcare" which pays for help to come in as soon as either of us get overwhelmed with caring for the other. When we need a NH it will pay for that, and so on. It also is increased 3% each year to help with inflation. We try to stay debt free, pay most things when the bill comes, prepay the majority of vacations, etc. Had my mom had this it would pay for her assisted living now. My step father shot himself in the head earlier this year. Maybe an out for him but devastating to his family!! Mother was having dementia already and begging him to move closer to me, so when he died, she had a breakdown. I had the yelling, screaming, cursing, denial, pitiful cries of lonliness, not wanting to eat, etc. (many etc.s). Got her in assisted living but I also had to help clear out her home and sell it, go through EVERYTHING to make sure I didnt throw away any important papers. Found some necessary ones. Had to neglect her at first to take care of her financial needs. She lost over half her income when her husband died and needs help from us just to be where she is. A decent place, friendly people, fairly good food. She is much better now that I'm spending more time with her. Her doctor also helped with meds. I highly recommend the health care insurance. It takes a load off your mind!! (both of us lost our former mates suddenly, but can't count on that for us.). We are blessed that we both have retirement income and can afford the ins.
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Thank you Donna for your input. I was caring for my widowed mother, and she suddenly 'flipped out'. When I was shopping for her, she took a cab to the estate atty. and changed her will, leaving all her assets to my sons, specifying nothing to go to me. She nailed the doors and windows shut, and called the police saying I had 'robbed her'. This was so sudden, it gives me fears that the same thing will happen to me. My sons called 911 and she was taken away in restraints, and never came home. She was taken to a NH in San Diego, Where my sons live. but remained in restraints as she was a 'fighter'. As her home was in L.A. I stayed there to take care of the home until she passed 2 years later. She had a large estate, as she and her late husband were in the movie unions. That made the cost of her NH and care not a problem for anyone.
My Dr. helped me get medi-medi, with Rx discounts. I lag on pursuing the DNR form, mostly because I can't find it....
Your situation sounds very complicated, and heartbreaking. Did you do the yelling, etc. or your mother? Seems men think the gun to the head solves it all, without a thought for those left behind. I guess death, like birth, is personal. I'm glad you have the necessary ins. for your future needs. How and when did you realize your mother was having dementia, what were the signs. That's my biggest fear, that I won't know, and will be carted away like my poor mother.
Thanks again for your reply.
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i would want someone with a spine to care for me. ive witnessed firsthand how hospice tries to throw their weight around while about half doing their own jobs. i dont have any daughters but i have one son who wouldnt back down from anything. i think i could count on him in a time of need and if not ill sit in my garden and trim water leaf till they haul me off. they will haul you off too, everything is illegal ya know?
on a related note you guys should read the article in der spiegal this evening about how obama is silently constructing the most totalitarian surveilance system ever concieved. the germans aint taking it without a fight. americans seem to be asleep at the wheel.
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We are all worried because we see it daily. I worry all the time about getting it too. My youngest and his wife already said they would never put us in a NH but we dont want them to be burdened either. The deal is, sell our house and all assetts and hire personal care with the money. I did that with my mother who is with me in my home. When she cries, or is scared, confused, cold, hungry, fidgety from incontinence, I am right by her side. She is never ever alone and sometimes she just puts her hand out for me to hold, or she tilts her head for long hugs. I could not imagine every putting her in a nursing home. The cna's I hire to help used to have 10-12 patients a day and they all told me there is just not enough time for one on one care and its super sad, hence they went into private care. My children have helped and know all about the disease and are well prepared should it ever happen. I also would like to just die before this ever hits and I pray it wont. It didnt hit my Mom until 86 and she was still living independently. She always told me that if she ever needed a NH to please shoot her! lol, we had many laughs over it but damn she did get it, poor Mom. Shes very happy inside her little brain though and laughs all the time, over nothing usually, but shes happy and thats all I care. I believe in private care if possible but who knows what will happen.
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To pvondyl
Thank you for your comments. Mom and I both yelled at each other. After a few weeks I told her "if you are going to yell at me... I'm leaving". She first said "I'm not YELLING!". I said yes you are and she looked at my husband and he shook his head yes. I was afraid she would think I didn't love her when I yelled back at her, but I asked and she said she didn't think that, thank God!
The first signs was she was afraid to open her mail, afraid they couldn't afford to pay them. Then spent HUNDREDS trying to win the million from PCH. She was an hour away from us and I searched all around closer to me but my stepdad wouldn't agree to move "into town". He knew he was making caring for them harder, but I know he had many problems and just couldn't face it. Mom would call me and say things I knew wasn't true, and forget she had told me things. They were getting meals on wheels so I knew they had food. Then mom stopped eating. Said she forgot. He was eating all day long, off and on, how could she forget? I could see she was depressed. This was summer 2012. I was taking her to drs appointments so talked to him about anti-anxiety meds which she had taken in the past. He agreed. She improved remarkably in a few days!! But was still afraid to open mail and constantly saying "I need a nanny". She was afraid of making some kind of mistake that would devastate them. So as soon as her husband died I started the procedure to get her in assisted living. She doesn't remember much from that whole first week. I commented one day that I and my husband stayed all but one night with her after he died and she said "I don't know about that.". She couldn't even remember me being there for her.
She is better mentally, but gets more confused about what's going on. It is so hard for me to see it. She called today and said she had taken both her AM and PM meds today and can't stay awake. I put her pills in a box Sunday. I was just there Sunday and Monday evening. (yesterday). She complained of diarrhea so I told her where I put them meds. Called back an hour later and she hadn't found them. So I talked her through looking in her medicine cab. In the bathroom. She missed lunch because they didn't call her and she slept through lunch. (remember she took her AM and PM meds this morning. Two sleeping meds. UGH!). I will call her at 4:45 to go for supper. She has some microwave sandwiches in her little fridge so I have to remind her to eat one when she misses a meal. I am down and out today. My husband took a list and went to do some errands without me. It is draining to be with her and repeat myself over and over.
But I got her a hearing aid last week and new glasses two weeks before that. Now she needs to see a specialist for a "cloud" in one eye. It never ends!! But I wouldn't choose the alternative. All our family history is in that head. Last of her generation. ( seven siblings). I keep telling my cousins who have lost their parents to call her and ask questions. I had 34 first cousins. enough for now.
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Take me out and shoot me like an old dog. I'm totally fine with it. Actually, I prefer it. "Living with dementia" is an oxymoron to me, even though I learned a lot about love and loving from caring for someone with dementia. Personally, however, I would rather not live under those conditions.
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Um, just want to say - I don't actually condone shooting dogs, or any animal, old or not. That phrase was used by my former housekeeper and it stuck in my mind. The idea is "put me out of my misery"... I don't know how, but that's what I would prefer.
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Already discussed it with my children (I'm 62) and the deal is if I am a nice demented person they can care for me if they wish to. If I am nasty they deserve better and they can come visit me in whatever facility they feel is best. Until recently no one in my family has had Alzheimer's. Perhaps because there is a history of not exceptionally long lifetimes. But my husband's family is full of dementia. But when I ask him what he would like, I never get a straight answer.
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