It’s often a double pain for them. They’re not only being told a loved one has died but there’s also a realization that they had forgotten that death and the awareness of their mental state.
But if you tell someone that their spouse is “away” or whatever, doesn’t that make the person sad? “Why doesn’t he come see me?”
They don’t realize how long the person has been away. Just that they aren’t present now.
With dementia patients, memory doesn’t work in the way it does for other people. Worrying about “why doesn’t he come see me” requires remembering yesterday and the day before and the day before that and all the other times he didn’t come, and dementia patients can’t do that. There’s only Right Now; yesterday and last week and last year and fifty years ago are all one big amorphous lump, and he was there during at least some part of that lump.
He’s either here right now or he’s not; in the dementia patients I’ve known, there are really no finer distinctions than that. Since even close married couples aren’t usually together 24/7, a spouse being temporarily “away” doesn’t usually evoke feelings of alarm, and you can’t be sad about him never coming if you have no memory of him not being around yesterday or last week (because you have no distinguishable memory of yesterday or last week anyway).
Is it like amnesia, only they don’t know they have amnesia?
MIL has dementia. While she’s essentially incapable of forming new memories, at times we suspect she is capable of perceiving and retaining emotions. So we try not to cause her unpleasant emotions to the extent necessary.
Gotta say, tho, dealing with a mentally impaired old person whose body won’t stop functioning, can be extremely frustrating. Especially if that person was pretty selfish when sentient. I’d be lying if I said I hadn’t thought about telling her nasty truths, but I’m glad I’ve resisted the temptation.
There were times as she progressed that I matter-of-factly would respond truthfully. Such as every time I drove her somewhere she’d complain about not being able to drive, I’d say she was a hazard on the road and had to get used to her new situation. Or when she complained about being moved out of her condo, I’d say the other people in the building should have to bear the risk of her blowing the place up as she smoked while using O2.
With my MIL at least, I’m convinced she really doesn’t give a shit whether we visit or not, or how long we stay. To the extent she does, it is mainly because she thinks it is something she is due. So we stop by on our schedule, stay briefly, and leave. Please shoot me before I get to that point.
Re: the OP, I’d probably come up with some simple story and stick with it. Dad’s on a trip. Or he was just here yesterday, don’t you remember? Of course, depending on how bad she gets, you could keep changing up the story, and you’d still get the same question. I talked with one friend who got tired of repeating the same banalities, so he would make up outlandish new stories about the extended family each visit. My personal choice would be to visit less - but I’m sure I’m not the nicest person around.
One thing about dementia patients is you can always get do overs. My mother-in-law was another one who would constantly ask where her husband (dead for years) was, and we’d always say “he’s on his sales route” which she always accepted, as in fact he was a traveling salesman for a good chunk of their lives.
One time, though, I said ‘Oh, he’s at the neighbors.’ (I don’t know why, I guess I was bored.) And she blew up, ranting and raving, and so I learned all about his affair with the ‘hussy’ who lived next door. Oops.
It took a while for her to settle down from that, but finally she got distracted by something on television. Ten minutes later she asked where Henry was.
I assure you, from then on he was NEVER anywhere but on his sales route…
I have a better understanding of dementia than of amnesia, but as I understand it, there are two main types of amnesia - retrograde and anterograde. Retrograde is the classic movie-style, “I can’t remember anything that happened before the accident” type amnesia, and anterograde is an inability to form new memories. It generally just seems to affect memory.
Dementia is not just about memory - it also refers to a loss in reasoning and thinking skills, as well as things like changes in mood and personality. So while they both affect memory, dementia refers to more than just that. Dementia also manifests in different ways. I cared for patients that had Alzheimer’s, Lewy Body, Parkinson related dementia, and dementia from stroke - each had different types of dementia. (Another note - dementia is not a disease itself, it’s a name for a group of symptoms that are caused by many different diseases.)
TLDR version: dementia is more than just memory loss.
It’s possible that story was a product of dementia, too. I’ve seen that in relatives, stories that could not possibly be true but were delivered in some detail and certainty.
Yes, the kind thing to do is to say whatever puts them most at ease. Truth, white lies, it doesn’t matter to them anymore. They still know how they feel, and you can still help that.
I once volunteered in a retirement home, and I was told never to play into people’s mistakes of memory, like if someone thought I was their daughter, I shouldn’t pretend that I was. I just wanted to say that this instruction for people who work somewhere is probably correct for people with casual contact, and not the same for family members. Just before my grandmother died, she got confused about a lot of things, and my mother used to answer her questions vaguely enough that they weren’t lies, technically, but were kind of low on actual information. It usually satisfied my grandmother, who would go on to something else. She didn’t have Alzheimer’s, she had some other kind of dementia, and had trouble learning new words, like people’s names, but she recognized the people who worked at her facility. The doctor thought she might have had mini-strokes. She sometimes didn’t recognize my mother right away, though, because she kept expecting her to look younger.
Fortunately, my grandmother liked to talk, and so she usually dominated the conversation, and didn’t ask a lot of questions.
She died last December, at 98 1/2.
I asked my wife about this last night - what she thought my MIL actually understood or remembered. MIL has cardiovascular dementia, most likely related to numerous TIAs.
One big problem is that we can’t really be sure what the MIL is actually perceiving. And she seems to vary between periods of relative lucidity. For example, last time my wife visited her, MIL recalled that my wife, our daughter, and granddaughter had visited her recently but hadn’t stayed very long. But on other occasions, she has described obviously fictitious visits from someone who had been travelling out of the country.
Add in that my MIL always had somewhat of an issue with the truth, and throughout her life would often say things and act in ways that she felt socially appropriate. So it is hard to tell exactly what her honest, authentic “self” ever was. As her dementia developed, she really worked hard at faking it, giving the impression that she was more aware than she was. So what particular thoughts/words/actions of hers at any given moment reflect honesty? Lies? Pretense? Dementia?
My wife even said she wasn’t sure that her mom wanted to see her all that much, other than that she seems to expect to be visited, and it gives her something to talk about with the other residents. And visits may be of some use in ensuring that the staff are providing the appropriate care. We are fortunate the old lady is maybe 15 minutes from us. So our decision has been to do pretty short visits maybe weekly.
Sorry if I’m not really adding much to the OP, and I’m not trying to turn this into my family’s issues. Just trying to offer my experiences and thoughts in hopes they help others reach their own conclusions. Miserable situation, for which I’m convinced there is no clear and universal right and wrong. Our default is generally just to be superficial and pleasant in what we say and do. If the MIL got hung up on something like the OP says, I’d probably try to say something noncommittal like, “Gee, I haven’t talked to dad for a while,” or even just, “That’s too bad” and try to change the subject. If she remained on the topic, I could imagine saying, “Sorry you miss dad, but I’m here now.” And try to change the subject - or plan a rapid exit.
I think you can almost overthink trying to provide peace and comfort to someone who is no longer fully sentient. No matter what your best intentions and efforts, they can always react in a manner you didn’t anticipate or intend.
You definitely want them to have some reasonable level of comfort and security. But there are limits to how far you ought to go to maximize that. Taken to extremes, you could give up your life to try to maintain the pretense that the old person was still functioning close to normally. I know no one here is advocating that. But maintaining some fiction to comfort unrealistic beliefs about deceased relatives impresses me as a tiny step along that path.
Just be honest and open with yourself as to what you are willing to do, and why you are doing it. And don’t be overly swayed by what the aged person or others (siblings, etc.) say you OUGHT to be doing.
Just a nitpick, really, but there are many types of dementia and a broad range of severity within each. It is not uncommon among dementia sufferers that memories from 50 years ago are crystal clear but what happened 50 minutes ago is not retained. Long term memories can be retained and accessible while the ability to convert recent events to long term memory is lost. This tends to add to their frustration since:
The last clear memory they have contains person X, but the here and now doesn’t. They have no real idea of how much time has elapsed between the 2 periods since little to nothing has been added to the long term memory so, to them, person X must still be the same as in their last memory.
I was in a situation very much like the OP’s. My mom was in an old age home with dementia/alzheimer’s. My brother passed away. When that happened, we informed Mom. However, after that, when visiting and she asked about Ken, I just told her I hadn’t seen Ken in a while, but the last time we talked, he sent his love. Of course, there were times when she remembered. I believed then and still believe now that it was kinder than reminding her that her first son was dead.
When there’s nothing good you can really do, settle for kindness.
“Dad is away but he said he loves you and I am sure he will call the first chance he has.”
all of which is most likely true.
God, that would be horrifying.
My great aunt has dementia and after her husband died (2009) she kept asking where he was. Her sons would tell her "Remember Mom, Dad died last month, 2 months ago, 6 months ago… Each time, she would grieve as if she had just heard the news for the first time. It was horrible. Eventually the family decided to tell her that he was outside gardening (something he spent most of the day doing when he was alive) and would be back later and she would be ok with that until she’d ask again. They continue to tell her the same thing to this day.
I’m not sure what the right answer is & I presume every situation is different, but my Mom says that ANYTHING is better than watching this poor old woman grieve over and over and over again.
Just a fib? It’s perfectly ok to build an entirely artificial town–with fake bus stops, fake supermarkets, and fake restaurants–to keep people with dementia thinking they’re living normally.
Do the residents get picked up by sentient bubbles if they manage to escape?
Seriously, though, I love this concept. Heck, I’d probably move there before I had dementia, given the opportunity.
Alternatively:
Here, let me ask you a question. You heard of a place called Shell Beach?
Sure, it’s…umm…err…it’s right down…wait…maybe it’s left…