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
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.
No need to keep upsetting 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.
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.
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.
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.
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.
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.
That’s a perfect question to ask!
Others have NO IDEA till they have done it.
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.
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.
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!
accepted. My heart goes out to you.
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.
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
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 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.
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.
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.
Please don’t worry too much about all the questions.The fact our loved ones repeat and “forget” can be a blessing.
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.