@psychmomma , been there, done that. I only told Mom once about my aunt last year. But then when they had the service and headstone setting ceremony (in lieu of the big funeral), the AL place said she probably shouldn’t go. So I didn’t bring it up again.
AND I am very sorry for your loss. I hope your family is able to comfort one another.
My Mom would have been the “organizer” for telling people and I don’t want to have that role. (even though, yes, it is up to us now, hugs to you)
Mom often thinks her mom is still alive so why argue about it. She is the only one left in her family, she was the youngest of 6. Dad is the only one left in his family, but he was only the oldest of 2. tough times.
I agree that it makes no sense to cause extra pain for an elder. If they can’t remember that a loved ones has died, what is the harm? I understand telling them once, especially if they ask why they don’t get visits from the loved one, but after that, it seems kinder to just go with whatever makes them happiest. I guess everyone has to deal with this in the way that works for them. My mom is the oldest surviving in her generation and my dad is the oldest surviving in his. Some of the next generations below them (my cousins and younger) are dying, which saddens all of us.
I had to tell my parents their son died. That was hard. Not as hard as telling my niece and nephew their father died though (SIL was in no shape to do this). For my parents, their emotions were far more blunted than mine due to dementia. But, 2 years later, they still remember he died but have never talked about it. My SIL and niece did when they visited 5 months ago and are distressed that they don’t seem to “feel” the loss and don’t understand the lack of emotion. Of course SIL blames me somehow.
So sorry, zeebamom, and psychmomma too. May your memories be a blessing.
I agree about not insisting that an elderly person with dementia fully comprehend the loss of a loved one.
GTalum, so hard. Just so hard. I lost my “baby” brother at age 59 the summer before last, a year after my dad died, and although it was after a long illness, it’s still hard to believe. Although I have wonderful relationships with my sister-in-law and my late brother’s three daughters, my other brother was very difficult until recently and it gave every loss an extra order magnitude. My sympathy and empathy.
@zeebamom , I’m sorry for the loss of your Mom. My father passed away in his sleep and it was hard to see it as a blessing (especially for my Mom who found him) at the time, but it’s definitely the way just about everyone wants to go. I hope the next few weeks are full of good memories for you.
@psychmomma, That must have been hard telling your Mother about her sister. My Mother is also the only one left of her family and now when she doesn’t hear from someone for a couple of months, she just assumes they died.
When I had to tell my mother about her brother’s death, she only had mild dementia at the time and could remember that he was gone. Several years later I told her my MIL had died, but she sometimes asked DH how his mother was, and we just let it go. More recently, when both her best friend and SisIL died, I didn’t even bother telling her. She wouldn’t remember, and would just get upset at the time.
We will take mom to the funeral, which will be an adventure in itself (incontinence). She already lost two brothers and speaks of losing them all the time. She was, and is still, very upset that one brother had no service to attend. It kept bothering her and not seeming real, which she repeated for weeks. This will be hard, but the right thing to do. She wants to go.
The last funeral MIL attended (last month), she got UTI. Didn’t change Depends enough. Sympathize @psychmomma .
It is rough getting old. MIL has sons only, and tough conversations. MIL is resisting ‘change’ which includes the bathroom breaks, changing out Depends.
Yesterday we were at the adult family home where she lived for the past 16 months. The caregivers became part of the family while she was there. Mom could be difficult and combative at times due to the UTIs and some other health issues as well as the dementia, but she loved those women and they loved her. It truly brought home how the right people and environment can make all the difference. Of course we would have liked to have her in our homes, but we knew that wouldn’t work in any way.
We didn’t tell mom of a couple of extended family deaths as it would have confused her if she’d even been able to understand. Fortunately they were out of the country so she didn’t read the obits.
A few things that have made this easier: She told us often what she wanted. A DNR was in place, although it wasn’t necessary as it happens. She’d paid for the cemetery things years ago when our dad died. We talked about death pretty openly and knew she wasn’t afraid and in some ways welcomed it. One sib took over bills and so forth a couple of years ago so we know all the finances and where everything is. We are all close by, so everyone, including grandkids, could be there.
@travelnut I highlighted it in the TV Guide but forgot to set it up to record! Crap. Was that on before, or was it a new show? I will look to see if it repeats - many times our PBS channel does that. Was the show good? What are the take aways?
@SOSConcern - It read like a new program on the program guide, but not 100% sure.
For me the, the take aways were the limitations of treatment options accompanied by the inevitability of disease progression, the poignancy of families trying to connect the financial and emotional dots to ensure safety and quality care, and the daunting statistical and quality of life challenges this illness poses for societies going forward.
To see adult children feeling guilty for deciding the only realistic option for care was outside of their home, coupled with inaccurate assumptions about what Medicare would cover, the huge expense of appropriate care and the reality of how long many live with advancing disease was very poignant. Also, some forms of the disease allow for genetic testing; seeing someone get “positive” results in advance of significant symptoms was chilling.
POV on PBS has several runs of a show about a hospice in another country that I have set up to record. There was a pretty good show on PBS some years ago about how some families are caring for their elderly relative because they could get by that way w/o going into a nursing home.
My mom died of dementia at age 77. I wonder about my brain - 60 and having had 16 chemo treatments does have some diminished ability.
Think my in-laws will continue to physically decline. MIL has some diminished mental capacity, but what will kill her is her heart. FIL I suspect will continue on and outlive her by some years.
On Fresh Air (NPR) today:
Doctor Considers The Pitfalls Of Extending Life And Prolonging Death
Humans have had to face death and mortality since since the beginning of time, but our experience of the dying process has changed dramatically in recent history.
Haider Warraich, a fellow in cardiology at Duke University Medical Center, tells Fresh Air’s Terry Gross that death used to be sudden, unexpected and relatively swift — the result of a violent cause, or perhaps an infection. But, he says, modern medicines and medical technologies have lead to a “dramatic extension” of life — and a more prolonged dying processes.
“We’ve now … introduced a phase of our life, which can be considered as ‘dying,’ in which patients have terminal diseases in which they are in and out of the hospital, they are dependent in nursing homes,” Warraich says. “That is something that is a very, very recent development in our history as a species.”
Thanks for sharing, @oldmom4896 . I heard most of this today and it made it big impression, especially the outcome statistics for elders with dementia or complex health challenges who receive CPR or feeding tubes. Most informative and it highlighted the questions that caregivers or health proxies should be asking on behalf of their relatives who can no longer be deemed competent. I will be looking into the book. Warraich’s focus on what matters most to his patients was quite illuminating.
I just got hired as a charge nurse (working 2-4 days/week as a RN) at a long term care and rehab facility. So now I will be ‘working in the trenches’. Not sure if I will be assigned on both sides (more long term care patients). Obviously differences on patient goals and length of stay. Have my drug screen today and will get more information…
Being in the ‘sandwich’ generation, I will definitely find appreciation that I will be on the giving side of the care than the receiving side.
There was a debate a while ago about if doctors should get medicare reimbursement for having a discussion about extending life vs. quality of life. My father in law had to ask to “quit” and then his doctor could get him into hospice but until he asked they kept doing everything under the sun to keep him alive. He finally said, “I’m tired and I miss my wife, I don’t want to do this anymore.” Hospice was wonderful and provided him quality of live vs. quantity. I think it’s a fair conversation for a trained doctor to have with a patient who is in a similar situation and they should be reimbursed for the time spent discussing it. I know the opposite side of the coin would be elderly people being coerced into hospice or pallative care prematurely, but surely there is a middle ground
Agree, @threebeans. Conversations increase the chance that the “right” thing for a particular family or individual will happen. Context can be lacking at key decision points and that makes everything harder.
We’re getting our wills/POAs/Health care proxy documents updated. I reminded DH (after watching the PBS show on Alzheimer’s) that if I get that diagnosis I do not want cancer treatment, CPR, or any other treatment to prolong my life. Keep me comfortable but let me go. We may need quarterly reminders, but things go on that are nuts.