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My 92 year old father passed last month. My 90 year old mother is in mid to late stage dementia. They lived together in IL until just over a year ago when dad fell and his decline started and he could no longer care for himself or assist in her care. He went to AL and she went to MC. He visited her each night after dinner - bringing her a candy and fresh water for the night. However that stopped 3 months ago when he entered hospice. She still saw him once or twice a week in his apartment when her caregiver or I took her to see him. But he was pretty non-communicative and she was full of repeated questions about him and his condition - she never really grasped what was going on with him. She did see him a few days before he passed, when he clearly (to a non-dementia patient) looked like he was dying. She didn't react unusually. When he passed we told her - she was shocked and truly crestfallen. No tears but she sat for about 30-40 minutes repeating "no, no" as we reassured her we were there for her and would continue to be with her. Then we watched the news slip away from her and her face return to normal. Days go by when she doesn't ask where dad is. Other days she asks every day for him. We typically say he is in his apartment upstairs. Sometimes she asks what he's doing. We say napping or just hanging out. She has never asked to go see him. But I struggle every day when I have to lie to her. But I also don't want to put her through the pain of his loss over and over again. My fear is what are we going to do at Thanksgiving when I bring her to my home and he is not there with us- a situation that never would have happened when he was alive. I know she will ask repeated all evening why dad isn't there. I fairly confident whatever I tell her will not stick. But do I say he was too sick to come, he had other plans (which would be total abnormal), what?

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Celebrate Thanksgiving with her at her facility. That would be kinder than interrupting her routine and subjecting her to "Where is he?" all day long.

Thanksgiving at your house is more for you than for her because her reality is different now, and it's natural for you to long for family life as it always was. But it's not and never will be. Enjoy the facility celebration, let someone else do the cooking, and be with mom where she is.
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JanPeck123 Oct 26, 2024
I wholeheartedly agree with this suggestion. It will be less stressful for your mom if you celebrate at the facility or in short visits from family throughout the day. Doing it in short visits from different family members may be best. If your mom asks where her husband is, family can say it's "just them" visiting right now. Hopefully your mom will accept that. If she enjoys seeing family, she will have a better experience with a few visiting throughout the day instead of all at once in a different environment. Children can be extremely unsettling for a person with dementia, especially if a child is very active, fretful or getting into things.
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Do not bring mom to your home for the Holiday(s)
A lot of people and noise is confusing and frightening.
And there is a VERY good possibility that as soon as you get her into your home she will want to "go home"
And you will not be able to enjoy time with your family if you are the caregiver for the day.
If you wish ask the facility if you can bring family to visit and have a dessert there. Most have a private dining room that you could use.
Or have family members drop in and visit her a few at a time over the course of a few days. Keep the visits short. If family wants to visit with each other arrange to meet at a nearby restaurant .

Oh, your responses to mom about where dad is are just fine. You are not lying it is a "therapeutic fib"
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I myself wouldn't do the lying.
You would have to repeat the truth over and over and she would mourn over and over while she still retains capacity to care at all, but she is worrying and fretting with each lie and to me worrying is the worst. I would rather repeatedly mourn.
I would not bring mother home. The time for happy holiday celebrations round the laden table and round the Christmas tree are now over. There will be activities where she is. Join them. Allow Christmas and Thanksgiving to be just another day for her rather than chaos and disruption in her routine which will be very disturbing.

You mom is no longer in your world of normals now. She has her own world (as Oliver Sacks used to say). And you won't be able to understand that world fully. But the best thing you can do for her now is to create peace when you are able. Practice the serenity prayer. There is little perfection in the end when dementia is involved. Just make it peaceful as you are able.
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KPWCSC Oct 26, 2024
AlvaDeer, I don't understand your feelings about this when you said:
"I myself wouldn't do the lying. You would have to repeat the truth over and over and she would mourn over and over while she still retains capacity to care at all, but she is worrying and fretting with each lie and to me worrying is the worst. I would rather repeatedly mourn."

I thought you had typed it wrong until I read the rest of the paragraph.

I haven't had to deal with this yet, but feel it may hurt the daughter also if she has to keep repeating the truth over and over and relive the mourning too. I may be wrong but I feel a lie that has been thought out ahead of time may be accepted easier because it may not affect the mother's feelings as deeply.

However, I would strongly suggest telling others who will be coming so as to be on the same page. I feel this would apply whether someone decides to tell the truth or a therapeutic lie.
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Don’t take her home where she will expect to see him . It will just trigger distress for her and everyone else .

Families get hung up on the holidays , thinking they have to bring them home . Your mother will not remember the holidays .
In this late stage of dementia , Your mother is better off not having her routine changed and getting upset . Bring a meal to her and visit .
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LoniG1 Oct 26, 2024
Very nicely stated. Thanks
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You are "What Iffing" most likely she won't even miss him, her brain is broken you are thinking that she will react normally, she won't.

Don't make such a big deal out of this, if she asks just say " He is not feeling well" or something like that.

Personally, I would not bring her home, she will have a dinner at the MC facility with her new homies. Visit her before or after their dinner and leave it at that.

Her life has changed and so must your attitude, she is not who she was and never will be, accept this fact of life.
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BurntCaregiver Oct 30, 2024
@MeDolly

"Dinner at the MC with her new homies". LOL
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Many many great comments. Most agree don't take her home. It really more for yourself than mom. Don't get me wrong it's perfectly ok to worry about yourself as you should to a point. You could as sad as it sounds thank her dementia for her laps in memory. I have always had a hard time understanding why some people feel it's absolutely wrong to lie to dementia. Notice I said lie to dementia I did not say lie to your mom. Your mom is mostly not there any longer she will not be offended or get HER feelings hurt for you protecting what time she has left with happy thoughts. Look in the mirror, tell yourself your a wonderful daughter.
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Don’t take her home. There’s no upside for her. Her routine will be disrupted and she doesn’t know or care about Thanksgiving anymore. The facility will likely have a celebration of some sort. Go to that with her. That’s enough for her now. I don’t see any reason to keep bringing up that your Dad passed because she can’t grasp that now. I’m sure I’ll be in your shoes soon when my Mom goes and my Dad, also later stage dementia, will ask repeatedly for her, like he does every time I see him and instead of “she’s in her room not feeling well,” being the truth, it will be a lie. That’s my plan at the moment - just tell him she’s still in her room. I’m sorry for your loss. Your Mom saw what happened .. so don’t feel any sort of way like you’re hiding the truth from her. She saw the truth and after 30 minutes it floated away like a cloud. If she ever asks if he passed, say yes … but don’t bring it up and keep doing what you’re doing. (My dad has asked point blank if my mom died when he hadn’t seen her in a few days and my brother got to answer honestly, “no.” Was odd but gave us insight into how he may not process it as devastating as we fear it will be when she does. It may be matter of fact at this stage in his head.). Don’t project your feelings of wanting a family holiday onto her. She is a lot better off keeping the routine and not leaving the facility to be around a lot of people which could very well overwhelm her and require significantly recovery time after. Maybe you and the care taker (or whomever she sees most often) can join her for the facility celebration. That’s her normal now. People she hasn’t seen in a while will take a lot of her very limited resources to interact with. Don’t do that to her.
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b8ted2sink Oct 26, 2024
Couldn't have said it better .
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Its not "lying" it's called creating therapeutic fibs to prevent mom from mourning dad's death 1000x. What on earth is the point of that???? When dementia gets advanced, your only goal is to keep mom calm and as happy as possible, not to ramp up her fear, anxiety and sadness.

I would take Thanksgiving dinner to mom and reserve the private dining room in her MC as we did with my mother for the holidays. She won't expect dad to be there because it's a new environment you've never celebrated in before. Bring along an 8x10 framed photo of dad, a head shot is preferable, so in case she does ask, you can place the frame at place setting in dad's honor. I did that in honor of my father at Christmas. If mom asks where dad is, THEN you can say he's gone, but still with us in spirit, as you place the photo on the table. Just one idea.

Best of luck and my condolences on the loss of your dad.
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Lovemom1941 Oct 27, 2024
I like to tell my mom “strategic truth”. What I mean is, I tell her the truth she can handle. When she asks about going home, I say she can’t go yet, the doctor hasn’t released her. When will she see my dad (deceased since 2010)? Soon. I don’t tell her anyone has died, she can’t truly process that anymore. She thinks she sees my dad every day so he was always, just there. Sometimes she thinks he is at work. I don’t correct her, just tell her she will see him soon.
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Thank you everyone. I think I was just in the mode of doing what we always do. But so much has changed since last year. Thank you for opening my eyes and supporting me in protecting her with the fibs. A few of us will join her in her community.
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Reply to Mmccontex
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IMHO telling someone with dementia a truth that will cause them emotional pain and to mourn all over again when their brains are less able to process it really only benefits the person telling the truth so that they can feel "good" about not lying... OR, they are projecting the scenario onto themselves at some future point in time, envisioning being told such a fib by their LOs and not liking that thought.

Part of a caregiver's responsibility is to protect their LO. I don't see how this type of technical "truthfulness" accomplishes this.

Bring to holiday to your Mom and tell her whatever you think will protect her emotional peace.
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