This. Fucking terrifying. 9mm option time, with luck.
I’m going to guess that although you say your family has a history of both, you haven’t spent a lot of time with the afflicted people. Because it’s not that they are living in a dreamworld - plenty of times, when grandma doesn’t recognize her grandson , it’s not that she doesn’t remember having a grandson, she does. And she’s angry because he hasn’t called or visited in so long - because she doesn’t realize the person visiting every week is her grandson and she has no idea why this stranger is there. They don’t understand why they can no longer live independently and resent having to move in with a child or to a memory care unit. And they sometimes have lucid moments when they realize something is wrong - which must be absolutely terrifying, to know this is happening and be unable to do anything about it. Some become psychotic, aggressive and paranoid.
Dementia/Alzheimer’s aren’t what used to sometimes be referred to as “senility” - it’s not a matter of forgetting why you went into the living room , or forgetting where you left your keys or forgetting people’s names or appointments or sometimes not being able to find the right word. Those are things that will happen to nearly everyone more frequently as they age. It’s putting your housekeys in the freezer or not recognizing your husband or getting lost on your own street or calling a phone “that thing” and not remembering what it’s for.
I’d much rather live in a dreamworld for years than know I’m going to die in a week - but I’d rather die in a week than live for years in the hell that dementia/Alzheimer’s seems to be.
PSA to all, if the parents you love don’t have power of attorney make them get it now. We’re in a fn mess because my mom doesn’t have one. <
What you you say echoes my experience with my parents. Luckily, we insisted they sign the papers for an LPA to enable us (me and my siblings, plural back then) to make crucial decisions on their behalf. It got finished only just in time, I swear that six months later the doctor would have refused to certify them as still compos mentis. One issue, under UK law at least, was that the LPA allowed us to use their bank accounts, otherwise, once either of them died, the account had to be opened by lawyer for a princely fee in four digits. That turned out to be literally just in time, as my mother died a very short time after the LPA was approved.
The rest of the post, about what dementia does; it is so true. My mother was possibly in the first stages of dementia, but it was not obvious. After less than a year it was becoming increasingly obvious that my father was slowly losing it. “Looping” conversations, which became increasing banal and repetitive. Numerous anecdotes, but generally the same ones, about his early life, while forgetting more and more of his late adult life. One indicator was that he could not make decisions, and also had little inclination to do anything for himself. He would do whatever we asked him to do. Well, almost anything, we had an ongoing battle about hygiene. It was squalid and demeaning, no two ways about it.
On the other hand, both parents could become very and almost irrationally aggressive at times. I was told that this is an early sign. Many patients also panic when they realize that their minds are going. We noticed that my father tried to get around his memory problems, but they were still obvious.
Somewhere I saw a quote that “in old age we become a parody of ourselves.” From what I saw, that is only too true.
As the parents, so the children. Will I do the same two decades from now? The answer is most likely yes, I fear. I just hope that I do not get to the stage where I do not recognize people any longer, that is immensely painful to those who have experienced it, and I am very glad that we did not. But I think it would have got to that stage if my father had lived another year. I gather also that the later stages of dementia are most unlovely.
Thanks everyone. The reason for the OP was for some reason last night I happened to remember a show with Kelsey Grammer a few years ago when he was diagnosed with something similar. The question I asked in the OP was exactly the one I would ask my doctor if it happened to me.
My wife and I are living through a dementia case right now. My MIL started down the slippery slope about a year ago. It started when she referred to her son that had just moved back home as “the guy living in the front bedroom”. The slide was fairly gradual, she could not remember my wife’s name, she would want to go home even though she was in the house she had lived in for 58 years. She went over the cliff about a month ago. My FIL was a rapist and a cheater, she would holler at him for hours. Her father fixed her breakfast that morning, not her husband. My wife was her cousin. She could still remember stuff from her youth on a farm in North Dakota. Her health has deteriorated during this time too, she has many ER visits the past year.
My wife moved her to a memory care facility a few weeks ago. With my FIL not around her now, her rage against him has subsided quite a bit. Her doctor can’t really give an estimate on her life expectancy. She is 86, a diabetic and in poor health. The memory care facility if on the expensive side and my FIL can only afford it for about a year. Not sure what is going to happen if she lives that long. One thing is certain right now, my wife’s stress level has dropped a bunch since Mom is not living at home and getting proper care. And the suggestion to get a POA, yes, yes, yes. It has made dealing with this a lot easier except for the asshole at a national bank branch that refused to accept it.
Yikes! This is my biggest fear! I have the POA, what if the bank says, nope. What’s left to do?
What did you do, if you don’t mind my asking?
That happened with my mother. She would ask me when she could go home, even though she was in the house she was born in. You absolutely could not convince her she was in her home, and she would get distressed.
Once she became convinced that a boat was coming to take us back to her house. (I don’t know why a boat. We are not near the water but in residential area in the Bronx.) She asked me to call my cousin who lives upstate to tell her we were coming by to pick her up in the boat. She also asked me to take down the curtains in the living room to take with us. I told her we didn’t need to because there were already curtains just like those at home. She got mad at me.
Here’s a thread from 2017 on a nearby point:
My aunt knew she was slipping into dementia and it terrified her. Fast forward a decade,
and she was completely happy. She’d run around her memory care facility hugging everyone and
saying she loved them. It’s like she’d gone into a dark place and come out the other side.
@Mike_Mabes, wow this will be a powerful thread. I’m typing this after reading your OP but before reading the thread. I’m 59 and I’d like to know too. It may (or may not) happen to me, and it’d be good to know what to expect.
I wonder if anyone here on The Dope is personally and directly (as in, themselves) experiencing any of this? what I mean is, if they’re able to post during periods of lucidity?
I’ll read the thread now…
@FriendlyCurmudgeon, does your mother live alone? If so then maybe she shouldn’t, especially in the cold of winter and she doesn’t turn on the heat, that could be life threatening. And, I imagine a worse way to die would be alone w/ no friends or loved ones around. But yeah this would be no picnic. If your mother has any periods of lucidity then hopefully you can get that power of attorney. Hopefully.
@mbh agree, make sure we have a good nursing facility lined up and paid for. I’m trying to do that, but I need to check if my plans will be sufficient.
@panache45, re “I’m not the man I used to be”, that’s what I’d be concerned about, periods of lucidity when then person realizes what is happening. They can see it in their eyes, when the other person realizes okay s/he is lucid now and you realize oh shit I must be putting them through hell. That would be awful to realize that’s happening to you.
@saje, @panache45, I’m so very sorry you experienced that with your parents. Must’ve been terrible. As you say/intimate it was.
@by-tor, that had to be an awful way for your father to go. I can’t imagine the fear I’d have as I’d struggle for my last breaths. I am sorry for your father and for your family.
@StarvingButStrong, I wonder if short stories would have helped your mother’s situation? Also, thank you for the good description. I am sorry too, for your experiences.
@Colibri, thank goodness your mother was able to alert the people downstairs! I think many of the elderly who fall probably aren’t able to summon help at all and have to wait to be discovered. Terrible. And, holy shit about that beer, what an awful scene. Thank you for your descriptive post, though it was sadness sprinkled in with moments of agreeable lucidity and behavior. I am sorry for your loss.
Wow, many of these posts are reminding me of Ronald Reagan’s farewell letter. I haven’t read it in many years, maybe years ago when I was at his Presidential Library, but from what I remember it’s like this thread has been so far.
@Steve_McQwark, can I ask you a question, how did you deal with this? How did you cope? And how did you communicate with your wife during this time?
@phs3, I hear ya. Maybe for me it’ll be .45ACP. I kid, of course, because I wouldn’t ever want anyone else to have to clean up afterwards. And I would NEVER want a loved one to be the (un)lucky one to discover what transpired.
To everyone else, thank you for sharing your powerful posts.
My sentiments are meant with the utmost in sincerity, and if they don’t come across that way it’s because my writing skills are lacking. Please forgive. I am an engineer, not a writer.
My father was lucid at the end, but he needed help. Of course. At one point my kids watched from afar as my brother held my father’s penis to help him urinate. It was humiliating for him. I could tell my kids were wondering if they’d have to do that. We talked. They said they’d planned who they’d help as we aged, and the two sons were to help their mother (we’re divorced) while the youngest, my daughter, was going to help me. I promised them that I’m planning arrangements and finances so that, hopefully, none of them would have to help me urinate. And if I am to lose my lucidity then hopefully my kids won’t have to deal with it. But I will need to have specific plans in place so that they don’t. I need to get going on those. Fortunately for my siblings and our children, watching my father towards the end wasn’t like the experiences of the posters here. I am very grateful for that. Thankfully my mom at 81 is still going strong. And my wife’s parents at 80 are both going even stronger.
Before that, my grandmother (paternal) was a vegetable for near on two years. Bedridden and non-responsive. She was cared for but it was merely an existence. If she had any amount of lucidity and/or self awareness, I wonder what she was thinking?
While the plural of anecdote isn’t data, my wife’s and my experience with her grandmother (who died last year at age 96 after more than a decade of increasing dementia) and my mother (who is 94 and has been descending into dementia for a decade or so now) bears that out.
For several years, Mom was actually happier than she’d been with her wits about her. She’d been the sort of person who found things to argue about and be combative about. Once she couldn’t remember what she’d said a few minutes ago, that side of her went away. But now she’s at the point where she can’t even put together a complete sentence. She has rages where she attacks her caretakers for no apparent reason, and we’re trying to get her meds adjusted so that doesn’t happen. We can’t say what’s going on in her head, but it clearly isn’t a happy place to be right now.
And my wife’s grandmother went through the rages as well, and she also spent a lot of time scared at earlier stages. While she could still somewhat communicate in her early 90s, she’d say she was ready to go home (as in heaven), and wondered why the Lord didn’t hurry up and take her. It would have been a blessing to her, as well as to the rest of us, if she had passed on much earlier than she did.
This is a timely thread. My mom is suffering from dementia. (And she is suffering. It drives her nuts that she can’t do things that used to be easy for her, and that she needs help.) My sibs and i are talking this afternoon about whether we should keep her at home with aides or move her to some sort of facility.
She was doing okay until she fell a few months ago. She managed to call the police, and the pelvis has healed nicely. But it took a lot out of her. We’ve hired full time aides ever since.
We have power of attorney, a child in her bank account, and a healthcare proxy (three different children) so that’s okay. With her permission, we took away her access to her money when we hired the live in aide.
She keeps telling me and my sister she wants to just end it. But it’s not legal to assist a suicide. And everyone but me thinks she’s crazy to want to kill herself. (My brothers, my sister, and her sister, who is older but in better shape.)
I think she can afford either aides or a group home. And i think a group home might be better, once covid vaccines are widespread in that community, which looks to be soon.
Dunno. Not looking forward to the phone call.
My mother did have happy moments interspersed through those years. She very much enjoyed family gatherings, and she got to see eight great-grandkids (which delighted her, even if it had to be explained who they were and she didn’t remember them the next day). I can’t say on balance how much that compensated for the boredom, fear, confusion, and physical pain she also experienced during that time. If it had been me, I would have been happy to sacrifice the last five years like that if I could have gone out suddenly by heart attack or stroke.
The morning of her 85th birthday, I went into her bedroom to wake her up. She groaned and said “I want to die!” I said, “You can’t die today, it’s your birthday!” She laughed and got up. 
She isn’t in danger from freezing to death. Even though she has the heat off here’s how winter living goes for her. Her condo is on the second floor so there is some residual heat from the neighbours below her. The temp in her place on the first floor is likely around 15°, second floor higher. She dresses in cotton pajamas, socks and a heavy house coat with a blanket on the couch she never uses. This temp might be a relief in the heat of the summer, but it’s just uncomfortable in the winter for normal people . I’m more concerned about her pipes freezing. If she was on the first floor condo this would be an issue yes for her health and especially since the first floor has a basement level and if my mother lived in that one, no doubt we’d have busted pipes from freezing by now.
I had chance when I thought my mom was having a lucid moment to talk to her about what we think was going on with her. I told her with great care, “we think you have dementia mom” whether that was a good idea or not I don’t know, but I felt it was important to convey that to her. Her response was the same “I want to die”
She has her legal documents on the couch in her living room as opposed to upstairs in a closet where it use to be. Like she’s ready to go, and when we visit she points out their location all the time.
There should be a legal way of writing a living will that says, effectively, “right now, while I’m of capacity to make such decisions, if dementia should set in, I want to be given the suicide pill when my symptoms reach such-and-such a level on a continuing basis. I will lack the legal capacity to make such decisions at that point, but while I’m still of sound mind, I’m making this decision for my future self who will lack that ability.”
My father was of sound mind until shortly before his death at age 90. My mother, as I’ve mentioned, is 94 and has been suffering from dementia for over a decade. (She’s not in bad physical health for someone aged 94; she could die tomorrow, or she could live to 100.) My sisters and I, all in our sixties, know it’s a crapshoot for each of us. But once I get to the point of routinely being unable to put together complete sentences, I want outa here. And I certainly don’t want to die on account of dementia so advanced that my brain can’t tell my body how to swallow anymore. I definitely want out well before then.
We have to get cognitive testing by the provincial government (Québec). That with a letter from her doctor her lawyers can then go to a judge to give us a version of POA. She already has a will and mandate for her condo, with us as the beneficiaries - so I hope it’s an easy decision for the judge.
She’s already done cognitive testing with her doctor via their office and failed the short term memory portion horribly, but the legal system doesn’t recognize that (fraud prevention I’m assuming) and needs it to be done by the province. She’s still scheduled for an MRI and appointment with a neurologist which we haven’t heard anything yet going on six plus months. Her doctor said it will take some time. So I’m thinking about a year or so.
Alzheimer’s scares the living fuck out of me because I have first hand experience with permanent memory loss. A few years back I had an aneurism that caused my brain to swell up so bad the doctors had to remove a section of it. I have lost random years, several events that would normally be with you forever…and various people, from the casual acquaintance to the lifelong friend. It doesn’t happen as often as it use to, but having random strangers come up to you, hug you and try to catch up on things with you is very jarring/disturbing. The memories aren’t just misplaced, to be found later-They are gone. Alzheimer’s has claimed people on both sides of my family so it is always on the back of my mind, and will remain so.
Until it isn’t.
The experience varies greatly. Some dementia patients are volatile and can become very agitated and angry. My MIL is the opposite. She just goes with the flow, and has the sweetest disposition you can imagine. She is 91 with Alzheimer’s. She does not know us anymore but still sings the lyrics to songs from her youth. She is not any of those things you list. But I don’t think that’s the typical case.
Are you saying you have to go in front of a judge and have cognitive testing to confirm, to enforce an existing POA?