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We told our mother that her husband had died the night that it happened, but every few hours she asks where he is? Telling her that he died over and over seems unnecessarily upsetting. After the first few times we started saying that he was away at the moment and she forgets she even asked seconds later. Can anybody who went through this offer any advice? Then there is the subject of the service. Thank you

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I've been in elder homecare a very long time. My last position was for an elderly woman with dementia who was pretty much invalid. Her husband (the same age) did not have dementia and was pretty independent until he got cancer and passed away.
She would get in a dementia loop and ask over and over again where he was. Sometimes up to 50 times a day or more. She was told at first that he'd passed away. Then finally we just stopped telling her. We'd say that he was in rehab for his broken leg. Or that he went to visit their son (who lived out of state).
Every time she was told that he passed away she was hearing it for the first time. She'd get hysterical then not remember why. This made my job and her life unnecessarily a hundred times harder.
Her family and friends had the same question as you as to whether or not she should be taken to the funeral service for her husband.
My answer to you will be exactly what I told them.
Absolutely not. If your mother's dementia is advanced to the point that she doesn't remember from one minute to the next that her husband has died, taking her to his funeral service will be a disaster. Not only for her but for everyone else who goes to it.
You can have people stop over and visit her after the service. Instruct them not to tell her he died though.
One of my client's friends who she didn't see often stopped by about a month after the husband passed. I had told her ahead of time not to bring it up or tell my client "how sorry she was" because of what would happen. Well, she didn't listen and came in with tears in her eyes, hugging her and offering her condolences.
Of course my client got hysterical all over again, then crapped herself, and regressed terribly for the next two days. Of course she didn't remember why, but the upset really set her back. ADL's like changing, dressing, feeding, and getting her to take her meds became almost impossible.
This will probably happen to your mom too. Please don't tell her again about her husband passing, and don't take her to the funeral service.
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Isthisrealyreal Jun 2021
Completely agree.

No need to keep upsetting her.
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My mother forgot my dad -- her devoted husband and soulmate of 66 years -- within three months of his death. It just devastated her, I think.

Four months after Dad's death, Mom "married" her high school sweetheart who she hasn't seen since 1944 and has been dead since 2009. He's the one she's always asking about, so we tell her he's at work. The guy is quite the workaholic at 94 years old, but she's completely satisfied to know that he'll be back later this evening when he's done climbing telephone poles, flying the Kennedy family around as their private pilot, or working with NASA on the satellite that crashed on the roof of her nursing home. (All are careers she's told us he has.)

My dad worked six days a week for the last 15 years before he retired, so it seems that making this new imaginary husband a bit of a workaholic keeps my dad alive, and it works with Mom. She was used to waiting around while he was off at work, so she's still doing it today with Dan the Invisible Man.

Find what white lie works with your mother, and stick with that one.
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Choupette Jun 2021
Lol thanks for the laugh. Sometimes it’s all we can do right. Good luck
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My dad had a heart attack on the front porch with my husband and my mom present. Mom was diagnosed 1 month before. He was revived 13 minutes later on the way to the hospital. He was brain dead therefore we had to wait days for tests to be run to prove it. Most horrible thing to sit and wait!! Each day mom would gather her things and say if he is just going to lay there and sleep, I'm ready to go home. She would bring him a towel incase he wanted to get up and take a shower. It didn't matter what or how we told her she didn't hold on to it. Morning of his funeral she just sat and cried saying I don't know whats going on. Most heart breaking to go through. For months she would ask at least 3-4 times a day...When were they going to fix dad so he could come home. We would try to explain but after so many times of repeating it...and it hurt to talk about it...we just stopped. Dementia being so new to all of us...learning as we went...we just started redirecting. She never did ask to go see him...even though she would ask when was he getting out and coming home. I would take her with me to change out flowers at the cemetery and she would look down at the headstone and say,
You just need to get up out of there!" It went from him being dead to he's out of town working when she would talk to others about him. From the moment of dad's heart attack for 3 years we never left mom alone at night...one of us siblings stayed with her..rotating every 3-5 days. When it became not safe to leave her alone during the day...she started breaking out of the electronic gate and wandering down the street...We had changed the code on the gate because she could remember it...from the past...she would unbolt the latch. lol So after 3 years we finally had to move her into assisted living with the hopes of being around others during the day would be better for her. Residents there would say she never talked about dad. She was caught once kissing another man and the staff asked me if he looked like my dad. Um no!! Was told that might happen...and it did! lol I would say in the last year and a half, she has never asked me about him anymore. She will talk about him but it is just thrown in there with conversation which at this point...her words make no sense. As for what to say to your mom...He'll be back soon...I'll call and check on him and let you know...He's outside working...He's at Richards house...anything to redirect her. She won't remember...and it's ok to say something that might not be the whole truth...but enough to pacify at the moment. It's been 4 1/2 years now and she doesn't ask anymore. Praying for you as this is not an easy road to walk!

As far as the service...mom made it through that. We kept her protected and didn't let her get caught up in conversation with anyone alone. She mostly was consoling others like it was something happening to them and not her. But recently her brother passed. Everyone kept asking if we had told her yet. I didn't and I won't. She won't remember tomorrow so why put her through any unnecessary pain. Some understood and others didn't...not my problem!
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Cinot7me Jun 2021
Thank you for sharing all of that......
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Oh, Bill is at the store now, he will be back in a little while.
Dad is in the bathroom, you know him he will take forever.
He took the car in for service, he should be back soon
Dad had a doctors appointment.
He went to get his hair cut.
Repeat as often as necessary.
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BurntCaregiver Jun 2021
Grandma1954,

Many times when my elderly client would be in a repeating loop asking where her dead husband was, my answer would just be "He isn't here. He went out".
When she was fixated on something in a dementia loop, it didn't matter what we told her or even if we didn't answer her every time. She would just keep repeating anyway.
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I used to tell my father that mom had passed away. He would become so, so sad and little tears would well up in his eyes and come down his cheek and he would either ask me to change the subject or more often he would just want to go to bed. I decided to tell him that mom is visiting her sister Elsie (her sister passed away 20 years ago.) Sometimes he doesn't remember Elsie, other times he will say oh they always have such a good time together or he might even talk about the good times when the family got together. Sometimes he just says "Ohh" and I think he understands. He might ask when she will be home and I say later today or maybe tomorrow. He no longer cries, he often smiles at the thought of family even if he doesn't really remember, he does know that family is good and family is love and happiness.
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It would be a kindness to continue with telling her he’s away.
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My Mom was so frail and sad, I couldn't bring myself to tell her. I always made up something.
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Dear Dan661999,

Im sorry to hear you and I, and probably no many others have and still are going through quite similar.

My mom, sees my grandmother everywhere. My grandmother, who sadly passed away 11 years ago, followed my mom from our home to her new home in assisted living.

I kept telling my mother that grandma sadly passed away and in our beliefs, we will see our loved ones who passed away, again when they’re resurrected. I try to keep reminding mom when she wants to feed grandma and upset that grandma is hungry.

Recently, I spoke to an elder in my congregation just about this. Am I doing the wrong thing? He said, that it doesn’t hurt anyone by just saying that I’ll take care of it. I’ll make sure grandma doesn’t go hungry. Or, I’ll make sure I tell grandma to stay with me for a while, Etc.

I actually tried this just yesterday. I was driving home and mom called. She said please bring grandma something to eat, she’s hungry. I said yes ma. Of course I will. And I couldn’t believe this, the topic was dropped. Mom was content with my response, for the first time! Usually, mom would keep repeating about her fears with grandma. (Is she hungry, is grandma warm enough or will she know where she is, Etc.)

I know I really don’t want to lie to my mother, but found that if it helps them and us get some sleep, it doesn’t hurt anyone, I’m gonna say what helps and de-escalates the situation.

lI also felt afterward, this was actually the most kindest thing I could do. She appeared to be extremely calm after I said I’ll take care of grandma, don’t worry, I’ll get her something to eat.

I now feel, what if this was the last night my mom is around. How would I feel if she spent her last night worrying about grandma. I feel so much better mom went to sleep with a calm heart, knowing I love grandma just as she does. And she doesn’t have to relive grandmas passing, over and over again.

Im not sure, being that we’re all different and so are our situations. But showing a loving response worked so much better for us. I hope in some way my response can help in some way.

I send this response with love and most sincerest thoughts and prayers. I do hope everything works out for the both of you and that you two, can sleep peaceful at night. God bless.
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If “away” is working for HER, continue to use that. It is simple and TRUE. Keep in mind that her brain is no longer able to embrace even the basics of explanation of a situation that now confronts you who love and care for her.

As to the “service”, why are you having one? Is it to satisfy the requirements of the deceased’s religious faith, or so that family can join to remember him, or for some other reason?

It sounds as if your mother in no way would benefit from being there. If that is the case, spare her, and keep her in her typical daily routine. Protect her from overt expressions of sorrow. They will not help her feel better.

There will no doubt be at least one upright family member who will cluck about your decision to allow your mother the peace of staying home. Ignore them.

As long as you are entirely focused on your mother’s comfort, please don’t be concerned about who thinks what, or why they think it.

Someone more concerned with nonessentials instead of your mother’s wellbeing just shouldn’t be considered.

Good for you who love her by protecting her.
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BurntCaregiver Jun 2021
AnnReid,

Of course there will be some family member or friend who will start as you say "clucking" about the mom not going to the funeral service.
The mom gets in dementia loops and doesn't remember from one minute to the next that her husband died. So her dementia is advanced and at this point it would be nothing short of miraculous if she wasn't incontinent as well.
The "clucking" family member should be asked the same question I asked some elderly, do-gooder, clucking friends.

What happens when she craps herself at the service?

I'm pretty sure those people will keep quiet about insisting she be allowed to attend.
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You have already told her and she has dealt with it - even though she doesn't remember. Therapeutic lies are better - "He is out right now," "He went out for a bit," "He's on a trip"...She should not have to grieve him over and over and over again.
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