Telling parent with Alzheimer's that spouse has died. How many times do you tell them? Or do you use a "therapeutic lie"?

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.

It would be a kindness to continue with telling her he’s away.

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.

You are handling it perfectly. Keep those therapeutic fibs coming. I'd keep her home from the funeral. Her being there would benefit no one and would be very confusing, upsetting, and disorienting to Mom.

Was this your Dad that died? A stepfather you were close with? If so make sure you take the time to grieve yourself, dont bottle all that up inside.

Keep up the good work.

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.

cxmoody,

You know how is it then. When they're in a repeating loop and get fixated on something, answering them over and over again makes no difference. Especially when it has to do with the death of a loved one.
Some of my client's elderly friends actually got rather cross with me when I told them I would not attend her if the family decided to take her to the funeral service. A couple of them actually told me to my face how they couldn't believe I could be so cold and cruel to not help her go.
What brought those two down off their high horse was that I asked them one question. I agreed that I'd attend her at the funeral service if they had a workable answer to my one question.

What happens when she craps herself in front of hundreds of people at the funeral home?

She couldn't stand even with assistance so there was no chance of cleaning her up in a restroom. Places don't have an adult-sized changing stations in restrooms like they have for when a baby needs a diaper change. So the only alternative would have been her sitting in it for the day.
When it was explained in exactly these terms their opinion on the matter changed drastically.

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.

I have lately taken to answering, “I don’t know” to my mother’s questions.

She is on a one-minute loop now.

My answers don’t matter. They don’t alleviate her anxiety. They don’t change the fact that she leaves our visits to ask the caregivers the same question that I just attempted to answer.

I am not allowed to be out in the main community area, because of COVID restrictions. So, my mother just leaves her room to go in search of another answer to the question in her loop.

After 4 times in 5 minutes, I just end the visit.

Sigh.

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!

She will keep forgetting what you tell her. You'll feel better not to keep repeating that he died. Just say that he's away or is not here. And then try to divert her to another thought. We have a friend who told me that her mother talked to the picture of her father and to the TV. My mother (with advanced dementia) eventually forgot my father. Another friend, whose mother had dementia said that her mother said told her that she "didn't know who she was, but she knew she was someone she loves."

My younger brother and I had to tell our Dad, who had Parkinson's and terminal cancer and was in one hospital, that Mom had dropped dead unexpectedly pending a routine procedure in another hospital. We were in the deepest grief ourselves, as this had just happened the day before, and we told him 3 times before he (pretended) to believe it. He had to go to a nursing home shortly thereafter, and I am convinced that since Mom wasn't there to see him every day as she would have if she could have, he finally believed it and died within 3 months of her. Sad doesn't begin to describe the situation. All I can say is, you've done what you need to do and if their loved isn't around, eventually this will be
accepted. My heart goes out to you.

I’m so sorry you have to deal with this. My father passed away in April this year and his mother, my grandmother, still thinks he’s in the hospital. This is what the nursing home staff and friends tell me. I went in person to tell her of her son’s passing and she seemed to understand at the time; cried and said she’d miss him. He had visited her regularly and was her POA, did everything for her. Now her other son has filled that role but lives far away.
I’m planning my father’s memorial service and I don’t think I will have her come. It seems cruel to have her be confused about what is going on to be told she’s at her son’s service. She was gently reminded by a friend that he’d passed away weeks after my dad died and she was totally shocked.

My Mom was so frail and sad, I couldn't bring myself to tell her. I always made up something.

This perhaps is one of the most difficult questions to deal with when it comes to redirecting a loved one with AD. Please consider reading, REMEMBERING WHAT I FORGOT by K.Allen
This story of "a day in the life of a memory unit nurse" was written as a tribute to our greatest generation and to help with questions such as this. Ebook and paperback formats are available at (or can be ordered through) Barns and Noble. Amazon and BAM.
Ken

My mom's awareness of the fact that my dad died about 10 years before her Alzheimer's hit was hit or miss. Several times, she was convinced that he was still fighting in WWII. (Is that really what Uncle Sam would have wanted- a 92 year old man?) On days when she thought he was still around, I thought, what's the harm? Each situation is different. I'm sorry for what you all are going through.

My mother does this from time to time I simply tell her some lie like he has gone shopping or to work or is visiting friends. It goes by and she doesn’t ask again for a few days. What I don’t understand is that her mother my grandmother died in her arms one morning while she was giving her a bath. And she still wants to go home to her, or my mother is going to be mad I’m not home, or where is she. And she also makes up stories about her that never happened.

You dont!!!!! You keep retraumatizing them over and over every time you tell them. I would NEVER EVER do that. It's like they are hearing it for the first time. That is so cruel

My mom’s parents died back in the 1970s yet now mom is asking to go to their house n visit her mom. She is so surprised when I say they have passed years a go. After many times I asked a cousin that lives close to the cemetery to take a picture n put some flowers there from mom(we sent money). They sent the picture of the name plate n flowers laid there. It seemed to settle mom down.

I am one of six siblings. Sister #3, unmarried, has dementia and is in an ALF in FL.. Sister #1, in NJ, age 86, died last year after a long illness. I am sister #4, live in SC and POA for #3. It was suggested by Professionals that we not tell #3 that #1 died as she would just keep recalling the death. Brother #5, in FL, and sister #6, in NJ, felt that was wrong and we should tell her, but went with the medical professionals. #3 kept calling to talk with #1. #1’s husband, our brother in law, was getting the calls and he would just tell #3, that #1 was sleep. He was 88 and having a tough enough time and he was getting bombarded with her calls. He got to the point of not answering her phone calls, it was really getting difficult for him and his family. I called my sister’s ALF, explained our situation, and told them we were going to tell #3 about #1. We had a Group FaceTime and I told #3. Yes, she took it very hard. The next few weeks were difficult. But then it faded from her memory. She would ask for #1, we tell, she forgets.

This past April, our brother in law died. #3 was progressing in her dementia journey, and it was decided we not tell till after the funeral. #3’s other POA, is a long time friend and lives near her. In a conversation our brother in law’s name came up. Her friend very gently said to #3 that he died. #3 asked how #1 was handling his death.

Many times #3 has brought up that she hasn’t heard from #1. This aspect has been very difficult for our niece and nephew as they are now getting the bulk of those questions. If there is a a lighter side to this, and I stretching using the term lighter side, #3 broke her cellphone, tried to fix it herself. We Brought her a new one and tried to input the numbers as we couldn’t import from the old phone. #3 now cannot find new phone, but thinks she threw it out.

This, too, shall pass!

You have a very long time ahead with these questions. You'll get used to going into her world with her to try to make that place comfortable for her. My mom was not very far into her Alzheimer's when my dad committed suicide. She was the one who found him. She remembered what had happened for a couple of years. Then she started asking how he died. I eventually just told her he fell and died of complications. It was 5 years until she started asking where he was. I thought that she would not ever remember again that he died. But when answers to where he was did not satisfy her, she would come around to the question "Is he dead?" and I would say yes when she seemed to already know. Then another phase of thinking he was outside waiting for her in the middle of the night got her sent to memory care, where she talks about him as if he is there with her. She's forgotten every alive person except me and she sometimes doesn't know me, but pictures of her mother, aunts, and uncles, grandparents, and best friends brighten her face. She wonders when they will visit next. She says my dad is out talking to the other guys or if she is looking for him, the caregivers and I say he is fishing with his friend Joe. She hated going fishing with him, so she accepts that.

Your mother will still ask over and over again no.matter what you tell her.

You might tell her that her husband has ,"gone ahead to get things ready"

She won't remember and she will ask again, but maybe she won't be as upset.

Imho, redirection is the key in this case.

I think you’ve done it perfectly. It serves no purpose to continue to tell her he has died. My condolences to you on the loss of your step-father. As for services, because it’s her husband, I think it appropriate to take her to funeral. Be prepared to have someone remove her if needed. I’ve seen that happen.

When someone has Alzheimer's, they have NO functioning brain - they cannot absorb or recall what you tell them. Don't even try. Think of making up an acceptable story - he is on a trip or visiting, anything - don't upset the cart as it won't stop her. And YOU have to get tough an don't let this get to you. Just ignore it - it is her sick brain. There is nothing you can do.

As you can see from all the responses, this IS very common and most often the best way to deal with it is to provide a vague answer that doesn't include death. Whatever you say isn't going to stick with them, and repeating the news about the passing is just going to upset them every time. It might be okay in the earliest stages, but from my experience, the short term memory loss was the first real sign of a problem and she would often ask the same questions or make the same statements multiple times in short order.

Sometimes, in the course of "discussions", we can figure out "when" they are living. Nine months after moving to memory care, my mother had what is often called a step down, where her memories became a different time in life. More recent memories were lost (not just new information, but recent memories too.) She became fixated on her mother (gone 40+ years) and her previous home. Questions and statements about one of her sisters confirmed that her "life" was in that time about 40+ years ago. Since I was an adult at that time, and was visiting, she still knew who I was. The grandkids? They were remembered as young children, not young adults, if she remembered them at all. Some didn't exist in that life 40 years ago.

So, we have to "live" in their moment or reality. We sometimes have to repeat ourselves. It does get annoying at first, but we get better at it, usually. Sometimes a response can be accepted (keep it brief), other times we can just acknowledge what has been said and try to move on or explore "when" they are living.

I, like many others and perhaps you as well, knew nothing about dementia when it took over mom's life. I had to explore and read what I could online to understand it, know what I might expect and learn how to deal with what does happen. Learn from those who've "been there, done that", not well meaning others who have never walked a mile with someone who has dementia! This is an excellent place to learn what you might expect and how to deal with it, but there are many good sites, just stick with reputable sites.

And if it bothers you, after you "deflect" the conversation, just quickly walk away so you don't lose it and get too affected - YOU do NOT deserve that. Don't let it happen to you. Take care of yourself first while you still can.

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.

When my brother passed, we told my mom. We told her again at his service, but she didn’t really grasp what was going on (which honestly was a blessing). After, when she would ask where he was or how he was doing, we would say he was away, and we were sure he loved her, and that we would all see him again “one of these days”. That was always enough to keep her happy.

Please don’t worry too much about all the questions.The fact our loved ones repeat and “forget” can be a blessing.

I think you are telling her the right thing. I read a book called “Are Your Parents Driving You Crazy” (I think that was the title).

They advised that if a parent with dementia asks for a relative that has died to tell them “They can’t come today” or something similar.

They said for the brief moment they may remember a relative there is
no point in upsetting them by telling them the relative is deceased.

Good luck. I know it’s tough.

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.