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Hi everyone, I'm so glad I found you. I have a long back story, but the main question is: do I remind my dementia/ Alzheimer's grandmother that her husband passed away?


Here's the back story: My grandfather passed this past Feb (gram was with him when he passed). He was her primary caregiver - she's had dementia for about 6 or 7 years now. Progressively getting worse. Grandpa didn't want to upset the balance by making her get a diagnosis until 2018 (when she got a UTI and broke her hip in a rage incident). So, she's not been properly medicated. He passed away and I was the only one that would take guardianship (also, I'm really the only one she trusts - Grandpa loved his whole family, but he knew that my 17 yo son and I were the only ones she would allow to visit and help caregive). Anyways, COVID hit right after I was granted guardian and conservator, we kept gram at home until Nov, when she had a little fall and I opted to (with the full support of everyone in my family) bring her to AL.


Now that she's in the AL - it's been about 8 weeks - she forgot her husband passed away. So I made this canvas picture "In loving memory" with dates of grandpa's birth, passing, and his photo to hang in her room. The owners of the AL are discouraging me from bringing it in, probably to not upset the balance they are finally getting, and are instead asking me to go along with her believing he is still alive. But she is also getting agitated that he's not there, he doesn't call, etc. I could really use some advice. I just keep telling her the long-distance is out, there's a pandemic - he can't fly in, etc.

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I just wanted to say thank you to everyone who gave me support and advice on this. The first few days of "lying" to my gram were very hard. Now I'm a pro at reminding her that he is 'weathered out and the long-distance is out'. They lived in a remote part of the state on an island so she's used to this. But "hopefully tomorrow" the weather will pick back up. The reason I came here to ask my original question was that I wanted the AL to be very successful in the transition of taking my gram in and I didn't want to keep reminding her and having her grieve every day. That was my thought process of the "In Loving Memory" canvas I had made. I thought "maybe if she sees this every day, it will become normal to her". But, the dates are or can be confusing, I understand that now.

Again, I really appreciate every one of your responses.
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My mom died in June (primary caregiver to my dad who has Normal Pressure Hydrocephalus- fluid in the brain & a shunt). He fell in December and is now in memory care. So this is a similar situation to the OP except that when he was still home he was starting to get me confused with my mom.
Apparently everyone says I look just like my mom when she was younger.
Im not ok with pretending to be my mother. That’s incredibly creepy. So I will be reminding him that I’m not mom. Sorry.
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I have a similar situation. My husband (74, Parkinsons with Dementia, and still at home for as long as I can handle it) asks to call his Mom, particularly in the late afternoon (he can have severe sundowning). At the beginning, I told him many times that she passed away 30 + years ago; he'll deny this happened and not 10 minutes later, he says "I need to call Mom." So I decided to "lie" (sometimes when caring for someone with memory loss, you have to do this). I say that she is out shopping, visiting friends, at work, etc, etc. and "we'll call her in the morning". If her memory is as short as my husband's, you can get away with the same lie all the time. Can you say, for example, that he's visiting friends today but will be in tomorrow? Or when tomorrow comes, does she remember the conversation of the day before? In any case, saying that her husband has passed away won't work - your AL center is right to suggest you go along with what she believes. On one really desperate evening (wanting to call Mom), I called my husband's sister in law in another state and she pretended that his Mom was staying with her but went out for the evening; so he leaves a message for her and is placated (at least for that evening, but tomorrow is another day, with a repeat of the same (call Mom, take me home). Dementia is as hard for the caregiver as it is for the afflicted.
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AnnReid Jan 2021
Often, in my experience, much harder for me than those whom I love. (Having quite a bad day today).
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Imho, it is probably best to not remind her.
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Best not to remind her. If you can, brush it off with a simple excuse (work, shopping, tinkering with the car, anything he might have been off doing before), then gently try to guide her to a different topic.

Hearing "bad" news is painful, and with dementia you would end up hearing that bad news over and over again, as you can't retain the "new" information. As time goes on, she will regress further, and may even ask about her own mother or father. My mother was early 90s when dementia developed, and her first "step down" in time was about 9 months after moving to MC (prior to that it was other issues, repeating herself, misplacing items, being unable to cook or manage finances.) The step down, or rather back, took her to about 40 years ago. I would be an adult at that time, and visited enough that she still knew who I was, but to her, her mother was alive and not long after she brought up a sister. Comments about her were also pegged in the 40+ years ago time frame. Whenever she asked if I'd seen or heard from anyone, I would just say not recently. Then she'd go on about whoever it was in her mind at the time. Just go with the flow then, so long as you can distract her from being agitated that her husband isn't there.
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Julia, here’s something I suggest you learn soon. It will help you on this long road with your grandmother. There is never a right or wrong answer. There will be really good, helpful answers here, but you will always have to select what you think is best for her. I have come to this site numerous times asking what is right or wrong for my mother. Wonderful, kind people offer help, but I ultimately have to decide.

For my mom, if she asks, I choose to tell her that her husband died. I told her one time that her brother died but never mentioned it again. I never told her when her son, my brother, died. She has never asked about him. Best wishes Julia. Please make your decisions on how you feel. Then try not to second guess yourself.
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ArtistDaughter Jan 2021
I too will say yes when my mom asks if Papa died. If she asks where he is I say I don't know and ask her if he went fishing with his friend Joe, which was the only times he was away from her during their marriage. She'll usually say, oh yes, that's where he is. When will he be back? I say he's never gone long and he took the grandsons with him this time I think. And then I try to get her talking about how he fishes but doesn't like fish, so I get to have the fish he catches and on and on into other subjects. But just this week she had an incident where she insisted he was coming to get her and that he was waiting outside. She upset the entire facility (it's small) looking for him. I was called and talked her down by going along with what she thought was true, but just that she had the wrong day, telling her he'd be there tomorrow. It feels awful at first telling the lies, but it gets easier.
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If your Grandma is at the point where she is forgetting things completely, then remembers as though it is the first time, I would try different tactics. Like reading to her, giving her something else to focus on, better than TV. However, if she is still quite clear in her mind you might try something else. With my mother, I tried a number of things but they did not stick. Maybe something visual would help. So I took a large piece of drawing paper and made 3 divisions on it. In the bottom section I colored it black, except a drawing of a baby in the womb. I called that "SAFE AND SECURE". Then in the 2nd section I split the section in half vertically and colored half yellow signifying DAY and the other half dark blue signifying NIGHT . In the day I drew a bunch of circles, representing family members, and I named them. Mom was the little larger circle touching the top line of that yellow section. That one I named MOM. I drew a clock showing time, a sun. On the night side I also drew some circle family members, a moon some stars. Some had a smile on their face, others didn't look really happy. I titled that section "TRIALS AND TRIBULATIONS". The top section I colored a pretty light blue. Again circle faces of family members that had passed, names on each one and smiling. I place the largest circle in the middle, next to the top line of the 2nd section, I titled that section "EVERLASTING BLISS".
I showed this picture to mom and she spent quite a bit of time looking from bottom to top, and back. Finally, she looked up at me and said "can I hold hands with him?" I drew stick arms on DAD, reaching down to mom. Then I drew stick arms on MOM, reaching up to dad, and joined their hands. She studied it, then her eyes twinkled and a huge smile came across her face. She finally got it, She wanted the drawing on the wall so she could see it any time she wanted. Her whole personality got happier, and she never asked about Dad again.
It worked for me, it might be worth a try for you.
Best wishes.
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Since Gram has dementia and was present when her husband died, your "reminder" will probably cause her to go through a grieving process every time she sees it. The facility are trying to prevent that reaction since she may be finally starting to get used to the facility and their routine. I really hate the idea of lying. It might be best to say her is out of town or couldn't make it (since dead people obviously can "visit") and leave it at that. Try to change the subject or try to get your grandmother involved in another activity whenever she brings up grandpa.

My grandmother had a period when she would talk about a family feed from before I was ever born. She would say how mad she was at a couple of family members. The first time of 2, I had her describe the incident and her feelings about it. Then, I helped her to remember the last time she saw those family members and how they had a good time together. I ended with reminder she that we needed to "forgive them." After the first 2 times, I would just cut to reminding her that we decided to "forgive them" and moved onto other topics and activities. Something similar might be helpful in your situation,
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To my mind the only GOOD thing about not remembering is not remembering sad events. I am not certain why you would want this constant reminder in your Grandmother's face all the time. Perhaps you can tell me your thinking about her needs to remember this? To what end? To re-mourn every single time it is brought back to her mind. I would not do this. You must do as you feel is best for your grandmother. While I WOULD make her a wonderful scrap book of his life to thumb through, I would not remind her of his death unless she asks.
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Juliasmygma, as others have said, there's no reason to remind your grandmother of your grandfather's death. When I first became my dad's primary caregiver, he often asked about people who had died (e.g. my mom, his mom, his dad) and I would say they had died and would show pictures of headstones, which both confused him and made him sad. Later on when he would ask those questions, I tried just changing the subject, which worked occasionally, but often not. Finally, I started just going along with his "reality" and making up reasons that he couldn't see them right now, which worked best. For example, when he wanted me to drive him home because his mom was waiting for him, I would reply, "I only have a bicycle and it's too late tonight, but we can do that in the morning after a good night's sleep and a good hot breakfast, which usually satisfied him. But when it didn't, then we would walk the memory care halls together looking for an exit so we could go "home." In short, for many people with dementia, white lies are more golden than silence (to put a new twist on the Tremeloe's 1967 hit).

Kudos to you for taking on the responsibility of overseeing your grandmother's well-being. Best wishes on this journey.
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disgustedtoo Jan 2021
Not only good examples, but good pointing out how YOU had to "learn" how best to tackle topics like this. Mom had a bunch of pictures she brought with her to MC. She would cycle through them, siblings, dad, grandkids, etc. She still, at that time, knew they were gone. Out of the blue, 9 months after the move, she asked if I could drop her off at her mother's on my way home. Uh Oh! Some quick thinking and quick talking got me out of that pickle! Her mother had been gone about 40 years at that time! I glanced at my watch, said it's getting a little late in the day and it's not on my way home, maybe tomorrow? She said OK. Whew! Flying by the seat of my pants on that one! She immediately asked if I had a key to the place in TownX, you know, on XYZ Street... That was sold about 25+ years before this "conversation." So, I lifted my lanyard, said not with me, I'll look when I get home. Again, OK, but she added that she would go stay there if she had a key (bet the current owners would love that!)

The picture/memorial OP made for grandma sounds really nice, but what the AL staff said is probably the best way to handle it. If she's just "coming around", you don't want anything that might set her back,

Always have some plausible excuse in your back pocket, for where he might be at the moment. Make sure it would mesh with "reality" for grandma - working, getting car repaired, shopping for supplies, etc. Then also have topics in your pocket, that you can try to change her focus with. Ask about various times in her past, in the old days, vacations, other family, etc. If you can push the 'needle' off the 'scratch', you can help her move onto something else, until the next scratch comes along!

Reminders of some things are okay. Reminders of something that will likely be painful and will never be a happy place are best avoided. We can't bend them back into our reality, we have to learn to delve into theirs!
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My Mantra- this is NOT “LYING”. This is LOVING KINDNESS.
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why not bring in a photo album of stuff from years past with everyone in it (if possible).  I honestly wouldn't "remind" her that he passed because it will upset her each and every time you tell her.  Just let her know that he is doing fine but due to restrictions with travel, etc., and him being busy taking care of house things that he just can't come in yet.  Do not bring up why he doesn't phone, unless she asks, if she does, tell her that he is busy and that you are sure he will call when he has time.  Don't feel guilty for telling little white lies as her brain has changed and she won't understand anyway.  I don't think my dad every knew he was in a nursing home, he thought he was still in hospital from when he fell.  why torment them.  pretty soon she will stop asking and when/if you visit just talk about "other stuff".......not about him.  wishing you luck.
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This was the hardest thing I dealt with as my late mother's dementia progressed. It seemed wrong to be untruthful to my own mother, but over time I learned about the benefit of "therapeutic fibs". Make a mental list of reasons why grandpa is not there. My go-to reasons included working late, golfing and fishing with my uncle. Mom accepted these answers because they were things that had happened in the past. I worried that she would suddenly remember that dad had died and be angry at me for lying to her, but that never happened. Basically, if she was confused enough in the moment to forget that dad had died, she was not going to remember what I had told her either.
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When my mom was taken into hospice my dad could not accept the fact that she was going to die. He wouldn't visit or call. Luckily my brother would call her every day to tell her he loved her and remind her of how our parents had met. Sometimes my brother talked to her like he was her husband. She held on for some time and those calls were all she needed to get her through+ her stuffed "scotty" dog that she never let go of. Give it time and reminders of death are not helpful for any of you. Try to remember stories you may have heard when they were together. Use those happy memories to give her peace. He's waiting for her return when she is better.
God bless, and take the advice of the AL they have dealt and seen all these things before, listen to their wisdom and then ask yourself what would you like to remember about your loved ones.
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You never remind a Dementia person that someone has died!!!
That would mean they would have to re live the death over and over again.

Just bring a regular picture of the two of them to put in her room.

Go along with whatever she says and make excuses of why he isn't there or just tell her he's coming because she won't remember she asked anyway so redirect her conversation to anything else.
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Eight weeks isn't very long.

If your grandmother fully took on board what was happening last year when her husband passed away - did she? - then I should think the current situation is that she is generally disoriented and it will take time for her settle back down. At that point, if you still feel that it is both possible to be truthful with her, then you can broach the subject and get a feel for what information she is able to handle. I wouldn't go straight in there with the full display, I'd ask questions and talk around the subject so that you can see where her memory is at on a given day.

So what I'm suggesting is that it's the fall (and possibly the fall's cause) and the move to AL that has thrown her out of whack, more than that she's plain forgotten that her husband died. Wait and see, preferably until you're able to talk with her face to face once again; and meanwhile I'd also work with the AL to discourage them from elaborating her false memories. Going along with her belief in the moment is one thing, but actively encouraging it shouldn't be necessary and I hope they're not doing that.
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It is very wise to follow guidelines that AL suggests. Remember, they have been through all of this many times and know what to do. Discuss with the staff how best to handle the situation. Hard to keep in mind that "reminding her" that he is gone is perhaps not best for her. You and your family members can keep his memory alive. help to make her last days less stressful if you just stick to general topics.
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There is no point to "remind" her that her husband has died.
Pictures are great. I would forego the "in memory" bit
If she asks about him you can say
"he can't visit now"
"he is away"
If you tell her that he has died she will relive the death as if it is the first time she is hearing about it. Sort of like Groundhog Day every time (excepts she can not improve events surrounding)
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My preference- stay in the moment that she’s in.

If she’s “agitated”, say “He had to go to the (store, shoemaker’s, bank, Church, etc.) today so he couldn’t come with me”. If she asks again in 5 minutes, answer in a similar way.

Phone call? “....having the phone fixed....”

Not a lot of detail, just enough to give her a chance to hopefully move on to a different subject. If she doesn’t remember that he’s dead, it’s fruitless to try to impress upon her that he is.

SO - what you’re doing now is allowing her to live without the discomfort of his loss. I think you should do as the AL staff is recommending. There really is nothing to be gained for her by doing otherwise.

She’s so fortunate that you’re there for her.
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When my dear grandmother was dealing with dementia, like most others, she couldn’t retain info, repeatedly going over something only frustrated and upset her. I would deflect with “he is working” “he’ll be here soon” types of comments. Sadly, the day may be soon that she won’t remember him at all
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Yours is a question that's come up before in the forum and it's a question you can struggle with. I'm sorry for your grandfather's passing. It sounds like he suspected she had dementia but didn't want to upset her with an earlier diagnosis. That showed his concern for her.

I would love to see your “in loving memory” creation. I can imagine it's beautiful. Is there any way you can remove the dates? If your mom would see those dates that could create some confusion for her. I think you could hang the picture minus the dates. You could tell her that he wants ( using present tense, not past) her to have it in her room.

As far as telling her that he died, there's no point in that. She won't remember you told her and will ask again and again where he is. She could become very confused and deny his death. Besides being creative with your memory picture, you now must become creative in your responses to your mom's questions. You might ask her when the last time she saw him was and reply with something like “that was a while ago”. Ask her to tell you about that time. Don't get into a prolonged conversation. Distract her by suggesting going for a walk or doing something else.
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