Long Winding, Descending Road

Wilted Daughter · September 21

Hello:

For 5 yrs. I am a primary caregiver living with 93 yr mother who has multiple health issues, vascular dementia (VaD) and on Hospice for several months. I believe the end of the road is near.

I have been circling various stages of grief as I witness what she is living through (unable to walk, stand, loss of hearing/understanding, delayed responses, slow motion action, inconsistent communication, etc.😔

Due to age, lack of recent interactions with family, so called friends, associates in addition to my daily grief the decision is for private funeral services, which her siblings will not understand or respect the decision. For 5 years it feels like I have been putting out fires daily on her behalf.

I'm exhausted, DO NOT like funerals or being in the presence of people with various ulterior motives. I feel that I have done enough and nothing more should be expected of me by anyone. I am the only child with one child and we just want peace for my mother and privacy, comfort for us. NO sympathy, food, visits, cards, or flowers.

**If you have similar shared experience(s) I would like to hear your stories.

Thank for reading, stay strong!!!

harshedbuzz · September 21

@Wilted Daughter

I am so sorry. I feel like this is totally up to you to decide.

One of the bitterest pieces to dad's dementia journey was his funeral luncheon.

My parents moved 200 miles away when dad, and by extension mom, were dropped by their social circle at the club when dad was likely at the very earliest and somewhat unfiltered stages of dementia. As dad progressed, even his brother shunned him. Mom once overheard his brother tell someone that he and dad were only half-siblings and that they didn't really grow up together when the truth was that dad who was older was his after-school care, tutor and even set him up in his fist business.

Day of the funeral, so many of these people turned up to the funeral and luncheon after that my own DH and son had to grab a seat in the bar of the restaurant instead of being with me.

I swore after that that mom's funeral will be limited to a graveside service for invited guests (her sister and my cousins if they can make it, my family and dearest friend, my nieces and their SOs. I will publish an obituary after and perhaps a mailed death notice to my dad's not-quite-brother.

HB

Quilting brings calm · September 21

I think the circumstances of every death is different and therefore every funeral ( or no funeral) is different.
Our son died unexpectedly at 31. We put the obit in three papers. Two close to us, one where he had lived. We did a visitation immediately prior to the funeral, with a lunch afterwards. This was just a few days after his death. We gained comfort from the many attendees.

When my step-dad died 10 months later, we had him cremated and deferred everything until mom passed. She died several months after my step-dad. We had a 15 minute graveside service two weeks later at a veteran’s cemetary, including military rites, on an extremely cold day. We published only the death notice with a mention of the funeral home. I notified almost no one but immediate family. I knew my siblings and two remaining aunts would not come for justifiable reasons. Maybe 30 people showed up with 20 total for lunch afterwards.
The difference - they were in their 80s, had been in assisted living for 5 years with almost no visitors and they’d outlived most of their contemporaries. It was all I had the energy and patience for. I just wanted it all to be done. I would have done a completely private burial but our remaining adult son loved his grandparents.

Edited because I can’t count months.

Wilted Daughter · September 21

Thank you for sharing your experience. There are so many things that can go right or wrong with funerals. If this task is left to survivors and not pre-planned, paid by the deceased there is a lot of should haves, could haves instead of coming together in support of each other for the lost of a loved one. It seems all persons who attend a funeral do not truly or deeply "love" the deceased or family and come out of obligation, etc.

I'll do what makes sense. 😌

Shenmama99 · September 21

https://alzconnected.org/discussion/74158/long-winding-descending-road

Totally understand! My 94 yo mom has vascular dementia. She will be cremated and her ashes will be put in plot next to my dad’s. I HATE funerals and will not have one for her. Fortunately my sisters and I r on same page. No one outside of immediate family will even know when we will be burying her ashes. This whole dementia nightmare is draining and we all need to do what we can to survive it. It’s none of ur moms sisters business what u decide.

Anonymousjpl123 · September 21

I relate, and agree with others above.

Many, many extended families in the US are estranged yet there’s this weird idea that memorials should “bring everyone together.”

When you’re the sole caretaker (as I am), it’s even more complicated because it sucks when people don’t show up, whatever their reasons.

This is entirely your decision. You, your mom, and your child are the ones who lived this and will need closure to grieve. If other relatives want to plan something they are more than welcome to do so.

This may sound bitter, but it really isn’t. My siblings and I have aligned closely around care for my mom but many family members haven't. I accept that, but I can’t make this experience about them. I may change my mind but that’s where things are now.

cdgbdr · September 21

You are absolutely able to handle the final arrangements as you see fit. My aunt with dementia died at 92. Her elderly husband felt strongly that the funeral should be for family only. He placed an obituary in the paper but no date or time of the service so that anyone who came was invited. She had outlived most of her contemporaries and it was what he wanted.

ARIL · September 22

It is an interesting question with no clear answer. It’s up to you.

My PWD is almost 92 and has outlived most family and friends. Yet at one time he had a job that was public-facing, and I suspect many people I don’t know in his community (around my age) will want to pay respects. Plus, he has signed a notarized statement appointing me as his agent for the disposition of remains, and it specifies location and details of a funeral and burial. So that’s what I will do.

I think a main question about funerals in general is: Who is this for, and what should it accomplish, and for whom? I agree with others that it is unrealistic to expect funerals to bring estranged families together; at the same time they can offer a concluding act that some people find comforting. I suspect that will be the case for me—not to review the past few years but to allow me to reflect on the longer scope of life.

Your call, entirely.

Wilted Daughter · September 22

Thank you soooo much for all your responses. There are experiences that gave me good ideas. For clarification I have no questions about the ‘right thing to do’ for all those concerned (mom, son, and me). Some of my mother’s wishes were illogical, imbalanced (one-sided) and I have repeatedly told her in the past. We believe she is in the transitional stage of dying, so it’s moot. I’m focused on objectives (honor my mother, disposition of the body, exhale and move on).

Funerals have a broad subjective meaning, which complicates matters if there is an attempt to appease people with different views. I read and believe that funerals are an event to support the family, revere the deceased. It’s not a sought after gathering and unpleasant for most. My mother’s funeral is going to be small, private (invite only). It’s a small town so word will get out, but we can post something afterwards – it’s not a forethought.

Again, thank you for taking the time to read and respond. Caregiving for a parent with dementia may be one of the hardest experiences in life for some…it is for me.

May you all stay strong and solider ON!

Quilting brings calm

“…published only the death notice…”

"It was all I had the energy and patience for. I just wanted it all to be done."

Shenmama99

“This whole dementia nightmare is draining and we all need to do what we can to survive it”

Anonymousjpl123

Many, many extended families in the US are estranged yet there’s this weird idea that memorials should “bring everyone together.”

“…can’t make this experience about them.”

cdgbdr

“…placed an obituary in the paper but no date or time of the service so that anyone who came was invited.”

ARIL

“…main question about funerals in general is: Who is this for, and what should it accomplish, and for whom?”

🤗🙏

SusanB-dil · September 22

Also in agreement.

When DH dad died, we had no funeral. Had a get-together maybe 2 weeks later. When his mom leaves us, it will be no funeral, and just a get-together (maybe a luncheon) a week or two later with only those closest. Especially since there are so few left who are genuinely concerned. Those who have abandoned can go pound sand.

'this' is exhausting and we have enough on our plate without worrying about what others want us to do.

You do what you are comfortable with.

mrhmlh · November 4

I am the sole caregiver for my 96 yr old mom who has mixed dementia. Luckily, she has made her wishes clear— a graveside service only and she said “I expect only you and your brother would be the only ones to be there and say a few words, and maybe my sister will come”. Well, my brother decided to estrange himself, his wife and 2 adult children from me and my mom. So, it will only be me and maybe her sister (and niece who will drive her sister). I will speak about my mom even if it’s to the sky and heavens above, lay an apricot colored rose on her casket (her request) and be done with her wishes. All of her friends have died and her burial place will be in a very tiny town an 8 hr drive from her home or from mine.

psg712 · November 5

I appreciate all of your perspectives on this topic. I am an introvert who finds interaction with large groups of people exhausting. I need "spaces in our togetherness" even with those closest to me. The prospect of being in charge of funeral plans for my mom, when the time comes, is daunting. But she has prepaid at a funeral home in the city of her birth, 400 miles from where we live now. Her burial plot is there, next to my dad's. I know there are extended family and old friends who cannot be of practical help right now but who will want to pay respects at a public event. And mom would expect me to do the expected thing … so I will. Just won't enjoy it !

JulietteBee · November 5

@psg712, I am right there with you. My parents prepaid all their burial needs, so a funeral is expected.

Once my mom dies, that will be the end of my birth family. As an only child, with my own only child, I am planning to keep it on the low as best I can as all of us are contented introverts.

No one is aware of her dementia. It is her perogative not to tell, but that means no one has been of any worthwhile help. A funeral by invitation only is what I am most likely to do. Mom's siblings, her closest friends, and a very select few of our church family.

If it wasn't already paid for, I'd prefer a celebration of life. My plan is one where I'd go on a vacation. You know how people pay to go to the middleast and "Walk where Jesus walked?" It would start with a week to our island home, visiting as many of the places that were impactful in making her into the person she became. Starting at the hospital where she was born, the primary & secondary schools she attended, the college where she got her first degree, the church she got married, the hospital she gave birth in, their custom built house; wrapping up the tour with visits to the places here in the USA that held deep meaning to her. Low-key just hubby, my child, and me.💔

psg712 · November 6

https://alzconnected.org/discussion/comment/257724#Comment_257724

That is a beautiful idea. Sort of a tour of your mom's life. Maybe after the "expected" funeral and some time to recover, you could make that trip.

JulietteBee · November 6

@psg712, thank you! I just might still do it.😢

Long Winding, Descending Road

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