How do I handle the passing of my ADLO's sister from the same disease?

Larrypags

My wife's sister, Jennie, lives 2 hours away and has been in a memory care unit for three years. Her husband visited her every day. She has just been put in palliative/hospice care and will pass away soon.

My wife Linda has ES, still fully physically functional, can play mahjong and solitaire, but can't remember what took place 5 minutes ago. Longer term memory and cognitive ability is fading quickly also. She is aware of her own decline but in each moment she's happy if you know what I mean. Her parents died from Alzheimer's years ago and now 6 year older sister is following the same path.

We used to drive up to NY and visit Jennie in the MC. As Jennie declined I could tell Linda would get depressed and anxious about her own future - so I stopped going. Linda askes about her sister Jennie every once in a while and I tell her that Bob is taking good care of her and she's in a MC. Linda says that's good and that's the end of the conversation. She is unaware of Jennie's current condition. In a year or two she probably won't remember she has a sister.

I don't know what to do when Jennie dies. Do I take Linda to the funeral? I don't know how Linda would handle the stress and sadness? I'm sure she'll be devastated, but 5 minutes later she'll forget and have to live it over and over again. Eventually it may sink in but I don't know.

The other option is for me to send our condolences, not go or mention it and just keep telling Linda that Bob is taking good care of Jennie when she asks about her. Bob and I are close and he knows about Linda's condition. I know he would understand.

This conundrum has me in tears every time I think about. Has anyone been though this and can offer any advice or insight?

M1

No advice, lots of sympathy. My partner's sister, three years younger died of lewy body dementia two years ago. They were very close, talked on the phone daily. there was no service because of covid. My partner asks about her frequently and forgets that she has died, but she doesn't get upset when reminded. I think you just have to play it by ear. I personally would not take her to a funeral, but that also is a judgement call.

Joe C.

I have taken my wife to 2 of her siblings services but she was solidly in middle stage. At the first service for her sister she did not comprehend what was going on but at the 2nd for her brother she seam to connect with the eulogy when her sister was speaking about their childhood and she started crying. As soon as we left the service she was fine.

Ed1937

Larry, I'm sorry. My sister passed away while my brother had Alz. My brother and I both lived in Indiana, while our sister lived in Oregon. I think my brother was probably late stage 6 at that time. I told his wife that our sister passed, and asked her what she would want to do as far as telling him. She said she thought it was important for him to be told, and she would tell him. But he never mentioned her death to me, so I assumed he had forgotten about it. I don't think there is a right or wrong answer.

SDianeL

I would not go to the funeral. I think you're right that it would not be good for your DW. I would tell her that her sister passed but she may not remember and keep asking about her. Then you can decide what to say if/when she asks. Such a heartbreaking decision. My sister has dementia and is a Stage ahead of my DH's progression. I am careful what I say to him about my sister because it upsets and depresses him knowing what this terrible disease has in store for him. If he asks about her, I just say she's being taken care of by her family.

LJCHR

I agree with the comments above. I will add that we are in almost the same situation. My DH’s sister just moved to MC today and has been placed on hospice. In 4 months she went from walking and meeting us at a restaurant-to can’t walk, bathe herself, and incontinence. All I told my DH was that she moved to MC. He doesn’t need to know, nor would understand the details. I want to protect him - and even though we know it’s the thing to do (go to a funeral, etc) the disease prevents them from understanding.

I would protect them above everything else.

Prayers to you in your decision-only you know what the right one is for you. Hoping you find strength in what you do.

Joydean

My dh’s sister passed away a year and a half ago. I wrestled with this very same thing. In the end I decided not to tell him. I didn’t think he would be able to handle it. It was really hard for me to make that decision because she and I were very close. I wanted so badly to be there but I had to think of dh and what it might do to him and the rest of the family. My heart goes out to you, it’s just one more thing this horrible disease takes away from us! Prayers for you you and you will make the best decision for all concerned.

ImMaggieMae

I agree with the comments above. I would protect her above all else. Nothing for her would be gained by attending the funeral. And telling her would likely cause her to be upset and she would probably forget but then maybe remember later. It’s so hard to know. I don’t think anything would be accomplished by telling her. So heartbreaking.

sandwichone123

I have some of the same questions, as my dh's parents are both still alive. He still calls his parents several times a month, although between skills and hearing they connect less than once a month. I did mention to his mom that I was concerned about what we would do when one of them passes, and she sounded like they would not expect him to come to funerals.

harshedbuzz

@Larrypags

I don't think there is a one-size-fits-all answer to this question.

Assuming an early enough stage to play a complicated game like Mahjong and handle her ADLs, that this is a sibling with an understanding widower, a 2-hour drive with no overnight stay, I think it would be appropriate to attempt it. I feel like this might be different than taking her to witness her sister's progression while alive.

This is one of those instances where I would use the Tam Cummings DBAT age equivalencies to make a choice. Even in early middle stage, a PWD would have a "mental age" (I hate that term) of 12-adulthood. Were she a teenager losing that close a relative, you would likely include them with support and a plan to leave if they became distressed. I think that could be a plan.

My BIL's mom had mid or early late-stage dementia when her husband died. The children really wanted mom there. She was clearly mentally living in the 1980s and while she would occasionally forget why she was there, she enjoyed seeing family and hearing nice stories about her husband. I questioned the wisdom of the kids initially, but I think they made the right choice for their family.

On the other hand, mom took dad to a visitation for his own brother's best friend. Dad knew this guy since her was about 10 and golfed with him several times a year. Under normal circumstances, it would have been appropriate for him to attend, but with dementia he forgot the solemnity of the occasion and acted like he was at a party. My uncle was horribly embarrassed and the widow gives mom (they live in the same 55+ community) the stink-eye whenever their paths cross. I had advised against her taking him and I was right.

Wisdom here is that telling a person will short-term memory loss repeatedly of the death of a loved one is not good. Many suggest telling once and then use fiblets going forward if it comes up again. This was hard with my dad as he would pose the question "Where's your sister? She's dead, isn't she?" until the very late stages. Much as he adored my sister, her death destroyed him, he didn't appear gutted to have his suspicions confirmed. Same with his mom and dad.

HB

Larrypags

Thank you all for your insights and experiences. I'm grateful to have a place to ask difficult questions and get such candid responses. When the time comes I will take everything into consideration and go from there.