How would you care for a loved one with dementia and how would you like your family to care for you if you had dementia?

For me personally, I hope that I am aware that it is happening before it overtakes me. Then I would solve the problem by ending my life by my own hand. I do not want to return to infancy and have to have someone changing my diapers (nappies). If it happened to my husband it would be a lot more difficult, but he has children from his first marriage and I feel they are the sort who would take turns looking after him. If not, I would keep him at home until I could no longer cope then I would have to put him somewhere he could be taken care of properly.
Not an easy dilemma for sure. There is an elderly bloke living around the corner from us, he has no family and judging from his conversations, his mind seems to be fragmenting seems to be a good word. He tells us “they” want to put him in a home. He has no family so I assume he means social welfare. He has a little dog and loves it and would not be able to take it with him. So he is fighting it. I think it is such a shame that there is not a way he could be taken care of in some way where he could keep his little dog. It is really his only reason to live.

@rooeytoo That is such a sad story about the man and his dog. I agree. The connection to pets can be as strong as a connection to a human being for people. Maintaining a connection with a pet in old age I think can be therapeutic. It is a shame that “the system” fails to realize this.

This is a great question, and certainly not an easy one to answer. I can’t see why anyone would want to put themselves in a home under the care of strangers in such a vulnerable state except for the fact that you would not want to burden your family, who still have their own lives. I would not want my family’s lives to be taken over by caring for me. On the other hand, I would not be able to walk away from a loved one in such a condition and leave them to a home. Is the answer to have many children when you are young so that the burden can be divided into more manageable pieces, plan your finances so that you can afford to pay for help, or depend on a system that fails people in so many other ways?

My wife and I have discussed this, and we each have expressed a desire to not be a burden to the other. Strange thing is, we each also expressed a desire to not put the other in a facility. I suppose we shall have to address that issue when ( and if ) it arrives. Taking care of someone suffering from this ailment is definitely not an easy task, yet when you deeply love someone, putting them in a facility seems very, very wrong. They never promised that life would be easy or fair, but they never told us how much it would hurt sometimes.

I think the ultimate would be to have an aide at home, helping and keeping the burden off family members. That way, the person could still have their familiar surroundings. If I got where I could no longer understand what’s going on, I may as well be dead, and I’d rather die in my sleep.

I would want whoever to put me in a home. I wouldn’t care that much, and they would not have to watch me and suffer.

It depends on the homes that are around, some are great and some are horrible. My biggest fear is my physical problems not be tended to properly, and being in a lot of unnecessary pain. Only my husband would know what to do and do it. Only him. I really feel that, it terrifies me. If he dies before me it would be a disaster for me. I am assuming I am not only losing my mind, but also less able to physically take care of myself.

If it was just my mind, it would depend on my age and how much of a burden I am, how realistic it is for my husband to care for me. Does he still work? Is having me home getting to be too much for him? Destroying his life? I hope if it is just a few very hard years he would keep me at home. If it were very prolonged I would understand maybe needing to be moved out. But, that does not get rid of my fear of being in pain mentioned above.

Having an aide would be the best solution probably. That is what my grandma had, and what my aunt has. Although, eventually, sometimes a facility ks stillthe best option when things get very bad. Aids cannot legally do some things.

If a loved on was suffering from dementia, I would try to get him into the best nursing home we could afford. If I notice the same happening to me, I would get my affairs in order, say goodbye to my loved ones and end my life someplace where no one would have to clean up the mess.

It is inhumane to force a person with dementia to live in fear and despair and any decent society would end that person’s life with as little pain and as much dignity as possible.

If there were no treatments available by the time this might happen to me, I would only hope the right to die laws had evolved so that they could put me out of my misery. Once your brain’s shot the thing that’s you is basically already dead, and your just a lumbering bag of meat with a broken mother-board. Full-time care can quickly devastate a family’s finances. I would much rather have that money go to my (hypothetical) wife, and if she’s no longer around, it would be better spent ensuring the financial security of my (hypothetical) children. Even if I had none of these, it would still be better spent on a charity (perhaps even one dedicated to curing these diseases).

I am in this situation. I will care for him at home as long as I can. I’ll get help to come in when I need it, but when he needs total care, he may have to go into a nursing home. We watched his father go through this, so we both know what we’re up against. It’s heartbreaking, is what it is. Losing or watching someone lose his ability to function is just so sad.

Having seen my mother through at least four years with senile dementia (she was showing milder symptoms several years before that) I must point out that senile dementia is a very different diagnosis from Alzheimer’s.

Dementia is a severe loss of short and medium-term memory and never gets as bad as Alzheimer’s.

My mother was already in a very nice staged-care community, living in an independent apartment near her boyfriend, in his own apartment. They paid for services (one meal daily in dining room, endless opportunities for entertainment, culture, exercise, participation in community government, writing the weekly newsletter.

Additionally, there was an in-house maintenance and nursing staff and management whom we made sure understood that we would and could rattle cages if necessary).

After the boy friend died and her memory got bad, we were able to keep her comfortable in her apartment with weekly visits and services from me, my sister and her husband, and a care giver who came in for several hours in the morning during the week.

We plastered her apartment with post-it notes, prompts, phones that blinked, beeped and amplified and we did whatever shopping and jitneying was required, including fewer and fewer meds and trips to the docs.

She never got enraged or irrational, she never did not dress herself; with the prompts she was able to do her morning ablutions, get her hair and toenails trimmed and trudged, on her walker, the long trip to dinner.

My sister and I were 25 minutes away, close enough to put out the brush fires that did flare up from time to time.

I should add that she was financially prudent and chose to sell the family house and move to this community while she was still able to drive, travel and have fun with the bf.

She finally had a severe stroke, pushed the alarm button around her neck and lapsed into a coma for three days, after which, with the help of hospice in the nursing care unit of the same community, died. My sister and I were there most of the time but did not have to do the nursing or the housekeeping.

It was a good death at 96.

When my grandmother got Alzheimer’s, the first thing that happened was that my grandfather took care of her at their home and my mom would visit periodically to help out. But as her condition worsened, my grandfather enlisted the help of a caretaker to live at the house as well and help. That worked for a while until my grandmother’s conditioned worsened even further and she attacked the caretaker. Not long after that, she got to the point in the disease where she no longer spoke or could no longer do most things by herself. That’s when she was moved into a nursing home, the house was sold, and my grandfather moved into a condo. My grandfather and my mom visited her periodically until she died.

Based on my observation of that situation, I think I would’ve aimed for a nursing home earlier. But it depends, I guess, on the person. I doubt I would’ve had the patience my grandfather had. And seeing what the stress of dealing with my grandmother’s Alzheimer’s did to my mom (prior to the nursing home), I definitely would’ve opted for that earlier. And of course my mom and my grandfather did a lot of research into finding the best home and they were quite satisfied with the one they chose.

Now if I had Alzheimer’s, I don’t know. My ex-boyfriend’s grandfather was diagnosed with Alzheimer’s and he shot himself in the head the next day. I can’t exactly say he had the wrong idea…

And also what @gailcalled said about Alzheimer’s vs. senile dementia. I was thinking Alzheimer’s when I saw this question. Alzheimer’s is a type of dementia, but Alzheimer’s is really just a gradual shut down of the brain, bit by bit.

Whew…such a tough call. My mind is so important to me. lol
To be reduced to a state of severe dementia is more than a little frightening. fortunetly there is no history of such in my family and everyone remains fairly strong minded til the end. I hate to say it, because I am not of a suicidal mindset at all, but, knowing I was going to be mentally fading away might very well cause me to entertain self annihilation. Gah!
I do not know, but yes, the thought of being a burden to my daughter or even worse, subject to abuse in some facility…talk about a rock and a hard place.

Of course I could be wrong, but, on a deep intuitive level I am pretty sure this won’t be my fate. My body will give out long before my mind.

@Coloma

They say that vitamin D-3 works well as a preventative. I’m taking it. I’ll keep you posted on what transpires. : )

If I could not afford live-in help to take good care of him, I would likely put him in a good nursing home. That said, I’m pretty sure he would want to kill himself if he were losing his control over his own life. The decision may well be out of my hands.

If it were me, ideally I’d like to stay in my home but have a non-family caregiver. If that isn’t possible, send me to a home.

Thank you so much for your thoughtful and honest answers and for sharing your own personal experiences. I have to say that while I don’t dwell on this topic, it does cross my mind and especially when I see or read something about dementia and/or Alzheimer’s. For me the biggest fear is being a burden on my family. The thought of causing them pain and hurt is very distressing. I think like a number of you mention, I would rather end my life than do that. Unfortunately, with our aging population dementia of some sort is likely to be something many of us will face either as a carer or a sufferer. I hope we find better ways to treat or at least manage these dreadful conditions. I know I have said this before but I think it is so important we share our thoughts with our loved ones so they know how we feel, what we would want and so they don’t feel they have to keep taking care of us long after we have lost the ability to tell them we would prefer them to find us a safe, caring place to live.

@CaptainHarley Oh, I take D3 a few times a week. I forget to take it, it’s in an orange scented oil form. I didn’t know it had brain power to it too.:-)

Anyone catch the “forget to take it ” part. lol

@Coloma

Oh, we “got it” alright. Tisk! : P

My grandpa on my dad’s side had severe Alzheimer’s before he died. He had to go into a facility in the last year of his life.

My grandma on my mom’s side has been slowly losing her memory for the past fifteen years. She tried to kill herself twice about five years ago, and my parents pressured her to move into a facility after that. Last month she had a stroke and though she is getting better quickly, she does have some lasting cognitive impairment, and will not recognize that she has made gains and will likely continue to do so. She keeps talking about how life isn’t worth living.

When I get dementia in my old age, I will do everything in my power to stay out of a nursing facility. As nice as the places can be, I find them all horribly depressing, and I can’t understand why they have become the default for the elderly in our culture. I think it’s a terrible thing to have made these the best choice in so many instances.

I think it’s pathetic to kill yourself for almost any reason, and selfish to not consider the family you leave behind. I worry a lot about what my littlest cousin will think and feel when my grandma kills herself. As long as there is any part of life available to me, including one with little memory or one with extreme disability or with chronic pain, I will do my best to enjoy it and not give up on the hope of enjoying it in the future if not presently.

We put my mother (who had Alzheimer’s) in a high quality aged care facility, where she was looked after well and they were able to meet her needs. It was the best thing for her, and she lived out her days in peace in an atmosphere of love and care. I would not expect my family to put their lives on hold for me.

@Harold

Excellent. I sincerely hope that option doesn’t disappear.

So it is selfish to kill yourself because your family might suffer but it is acceptable for same family to put you away in a home where they don’t have to look after you but you suffer being away from your home and all things that might ring a bell of familiarity?

Screw that, I’m going for the nembutal and if my family suffers I guess they just have to learn with death sooner than later.

@rooeytoo As I remarked above, I think neither of those is a good choice, actually.

The former, because I find nursing facilities awful, because I think of caring for elderly family as a necessary part of life, and not an element that requires putting it on hold, and because my family is fortunate enough to be able to afford other solutions as my parents age.

The latter, because I think the commonly held notions that the self is fully defined by the mind, and that the mind is fully defined by memories, are both incorrect, and because I love being alive so much even when I’m in terrible pain, I find it difficult to imagine not wanting to be alive even if I experienced really severe Alzheimer’s like my grandpa did.

I just read this article. This is what I would want if I couldn’t live at home.

@wildpotato That sounds awesome. I’d be all up for that idea, for myself or a loved one.

That sounds preferable to the average nursing home for sure. But for me personally, it would depend on how far gone I am. I have seen Altz patients who are completely out of their minds, aggressive, irrational and plainly miserable. I don’t want to exist like that. So I would still hope to avoid that by taking my own life before I reached that stage.

This is going to sound very callous but please understand that my mother has it, my great grandmother had it, there is a good chance that my grandmother had begun to dive into the depths before she died so given that:

I would prefer to be left on an ice floe before it gets reeeeaaly bad.

It doesn’t sound callous @rojo. I understand what you are saying.