A merry question about funerals and late-stage Alzheimer's :(

October 2, 2011 5:16 PM

How to handle the funeral/remberance of my father, with my mother who has late-stage Alzheimer's?

My parents have been a couple for over 50 years. Sadly, my father recently had a severe heart attack. He is in a coma and the doctors say his chances of survival are under 1% - and that his chances of non-comatose survival are significantly less than that.

This has come as a large shock to my siblings and I who "assumed" that our apparently healthy father (well as healthy as you can be in your 90's with a 10-year old triple heart bypass) would be here a while beyond my mother. We are looking for advice (we are also, obviously, seeking professional support, but would appreciate your help too - especially if you have been in a similar situation!) about how to deal with thel funeral / remembrance arrangements.

While my mother is very happy and friendly in her life - she has late stage Alzheimers disease and she is in care - she lives in her own world and is no longer capable of having a sustained (where sustained is the length of a conversation) interaction with anyone except possibly "that lovely man" who will no longer be visiting her as he is now dying and in a coma. My mother could probably travel, with assistance, to the funeral - but she is not going to understand what is going on and the whole event is likely to cause her only significant distress and disruption as opposed to anything positive, so we are tentatively proposing holding the funeral/remembrance without her.

At the same time, they have been/were "together" since the 1940's. They were undoubtedly the most important people in each others lives for longer than we have been alive and it is important to us that their relationship is at the heart of our remembrance of them. We just don't know how to handle this process without feeling like there is a huge (living) hole in the middle of it. So - If you have gone through something similar or have additional advice - beyond seeking professional help - it would be most welcome.

posted by anonymous to human relations (14 answers total)

My deepest condolences.

> My mother could probably travel, with assistance, to the funeral - but she is not going to understand what is going on and the whole event is likely to cause her only significant distress and disruption as opposed to anything positive, so we are tentatively proposing holding the funeral/remembrance without her.

Seems reasonable.

When my father passed away last year we had a small wake with a local funeral parlor and kept things simple and the costs reasonable. Several months later we had a larger more elaborate service at the university where he had worked and people got up and said nice things about him and there was food.

Don't do things because you feel that's what's expected of you, do what you judge to be best. Everyone will understand and be supportive.
posted by justkevin at 5:30 PM on October 2, 2011

Unless your mother's doctors have a strong argument to the contrary, I think you're doing the right thing by not putting her through this.

I think you could make the service, in addition to being a remembrance of your dad, a remembrance of your parents' love. Put up pictures of the two of them. Encourage people to tell stories about their relationship and your family as a whole. Talk about their life together in your eulogies. Ask people to bring you copies of photos they have of your family or mementos of your dad and his love for your mom.

Then, if you want, and if you think your mom would be up for it, you can share some of those photos and mementos with her. Even if she doesn't know who your dad is or remember specific events, it might be nice for her to look at photos of a happy family on vacation or a birthday party or other happy times in her own life. That might be a way to "remember" him with her, even if she doesn't actually remember.

If my experience of losing a parent is any indication, nothing you do is going to feel good enough, because you're going through a terrible loss. But just remember that nothing you do here can be wrong. You do the best you can, and that's enough. I'm so sorry that your family is going through this, and I wish you all the best.
posted by decathecting at 5:32 PM on October 2, 2011 [14 favorites]

You have nothing but my sympathies and complete understanding. With the exception of my parents' ages and the fact that my mom is not quite as advanced in her illness as yours, you have a pretty close picture of how my father's death played out.

While neither mom or dad was in great health, we certainly expected dad to outlive mom. When his health declined and he started his 5 week stay in hospice, this issue became a pressing matter for us. Mom also ended up in the hospital, and later a nursing home. There were some discussions around what to do with her during the wake and funeral, as she does also suffer from seizures. Who would attend to her? We considered not bringing her to the funeral as well, for a host of reasons; some were similar to yours, some had to do with weather and logistics (it was 100 degrees).

I tell you all this because I just want you to know that I understand you. And so when I say you can leave your mother where she lives and conduct the funeral with her there in spirit, it will be ok. They were together for so long, and in a sense they still are. You can have pictures of the two of them on display, have people tell stories or recall events, whatever you like. But just know that if it would be too much for your mom now to go, it is okay to leave her in the comfort of her home. There won't so much be a hole without her in attendance, but rather the knowledge that your mom is safe and not upset. You and the rest of the family can remember your mom and your dad on that day.
posted by oflinkey at 5:38 PM on October 2, 2011 [2 favorites]

My in-laws had a similar scenario/timeline in their decline (quick illness for dad, advanced Alzheimers for mom). Their solution was to wait until they were both gone to hold a service to remember them together. It was very sweet, and their ashes were scattered together where they had met (obviously this can only happen if you choose cremation).

Considering what you say in your final paragraph, this may be a thoughtful way to handle it. My sympathies to you.
posted by quarterframer at 6:10 PM on October 2, 2011 [1 favorite]

Very similar thing happened with my grandmother and grandfather. We (with advice of her docs) decided not to tell my grandma that my grandfather had died. She was at a stage where she rarely, if ever, had lucid moments, and telling her would be a new experience every time - imagine hearing your husband is dead for the first time, over and over again.

This was just what we decided; It may not be right for your family, that is something you have to determine.
posted by melissasaurus at 7:05 PM on October 2, 2011

I'm so sorry for the losses you're experiencing. After my grandmother died, we were advised not to tell my grandfather, who also suffered from Altzheimer's disease. The logic: he would forget and so would then have to be told repeatedly. If he even understood, he would experience the information as new and react with fresh grief, which would be hard on him as well as upsetting to his family. He would, various caretakers informed us, work it out over time and take her death on board. This turned out to be correct.

For whatever reason his children decided he should attend her service at their church. In my view they erred because my grandfather did not understand what was going on and so got nothing out of it. Moreover, his loud interjections (e.g., "Who died? Who's that in the coffin? She doesn't look so good.") were very upsetting to their friends. I wish my father or one of his siblings had simply explained the situation so everyone could focus on my grandmother and process her death.
posted by carmicha at 7:07 PM on October 2, 2011

Without a doubt, do what is kindest to you mother.
posted by DarlingBri at 7:22 PM on October 2, 2011 [2 favorites]

Alzheimer's goes through my family like wildfire, and we've had a few funerals with spouses who were suffering from the disease. It never went well, and eventually, the cousins all came to the conclusion that it was far kinder to the spouses and to the remaining relatives not to bring those suffering from dementia like that to the services.

I wouldn't keep the news of your father's death from your mother, but I think it would be easier news for her to handle in the familiar environment in which she's now placed. Removing her from her daily routine, the trauma of travel and the stress of trying to appear "normal" with a lot of other people around (many of my relatives with Alzheimer's seemed to have moments where they tried desperately to cover up the fact that they were confused) won't help her at all.
posted by xingcat at 7:29 PM on October 2, 2011

My experience was similar to carmicha's: As I waited in church to eulogize my mother, my grandmother leaned over from her wheelchair and whispered "who died ?".

Follow oflinkey's eloquent advice, above. Don't put your mother through the ordeal of processing this at a memorial she can't participate in.
posted by Kakkerlak at 8:39 PM on October 2, 2011

decathecting and quarterframer both have wonderful ideas.

I just wanted to say that you seem to be a very considerate and loving person, and I am sorry for your troubles.
posted by BlueHorse at 8:43 PM on October 2, 2011

You're lucky your mother is demented (sigh, but what else do you call it) enough at this point not to be aware that your father is gone.

"She was at a stage where she rarely, if ever, had lucid moments, and telling her would be a new experience every time - imagine hearing your husband is dead for the first time, over and over again."

We didn't tell my grandma with dementia about my dad dying, but dad hadn't been in her daily life for years and therefore she didn't miss him. But she and my grandpa went into the nursing home at the same time when she still had enough brain going to know he was in her life, so after he died, I'm told that multiple times a day she's asking "Where's Norman?" and, well, in her case she IS hearing it for the first time over and over again.

Please leave her at home. It'll feel weird to you, but it'll hurt her a lot less to not force the issue.
posted by jenfullmoon at 10:03 PM on October 2, 2011

When my grandmother died, the decision was made to bring her younger sister to the funeral. Younger Sister had Alzheimer's. It was jarring for the gathered (not the immediate family - we knew) to keep hearing "who died?" in loud stagewhispers, but I think it was harder on Younger Sister to repeatedly be told that Older Sister was dead. Each time, she would gasp sadly.

She also became confused when she saw all of her family gathered together, and declared that it must be Christmas. Which didn't bother the family (we all loved Younger Sister) but again, was jarring for other mourners.

So I say leave her at home, for she is "not well" (which is all that needs to be said at the service). I wish you and your siblings peace and healing.
posted by ladygypsy at 4:38 AM on October 3, 2011

I can't even imagine taking her to the funeral with a bunch of potential "strangers" (who clearly know her well) wanting to talk to her and how that might be for her. I think it is kinder to let her maintain whatever routine she has left, and to just let "that lovely man" fade away.

I know that you have already had to let go of so much and this must be so awful for you, but I think it would be extra unnecessary awfulness for you and her to have to tell her over and over.

I am so sorry that you are going through this.
posted by Lyn Never at 9:49 AM on October 3, 2011

I'm so sorry you are experiencing this loss. Alzheimer's is difficult and while I am not an expert, I've had a family member suffer from it.

Grief is difficult for everyone and I believe while it might be kinder to not tell her, you might be protecting her from feelings she needs to have, which are grief and sadness. This is a natural feeling for everyone experiencing loss and even though she may not be completely aware of who the nice man who comes to visit her is, she will miss his visits and most likely ask about him again.

With that said, I would consult with her medical doctor as well. He knows her overall state and physical health best and can help guide you to a decision.

If you need addition information on planning the memorial, I can also suggest 2 resources:
www.heart2soul.com
www.EverestFuneral.com

Heart2Soul is a free comprehensive funeral resource which can help guide you through the planning process - you can also sign up and create (for free) an online community where friends and family can come together, stay on top of arrangements and communicate with one another.

Everest Funeral is a Concierge service providing funeral professionals who will help guide you through the planning process without bias to any products or services.

I'm so sorry for your loss.
Karen Zinn
founder, Heart2Soul.com
posted by heart2soul at 6:50 AM on October 6, 2011