My parents were both in their 90s and last bunch of years weren’t very cheerful for any of us. We were fortunate my older brother paid ALL their expenses at their CCRC, including 24/7 caregivers for mom.
It was definitely an eye-opener for all of us and not in a good way. D asked us to make S medical poa as he’s able to be more objective and dispassionate than her in making sound medical choices.
Cancer and dementia are a rotten combo, especially for the love ones.
A good friend has stage IV cancer - he is 77 and his wife is 67. Their kids are 26 and 30. He has estimated one year left to live – immunotherapy has been ineffective. Barring a miracle. They moved to where they were wanting to retire together two years ago, and now the paradigm is with her left in different state than both kids – which might still work for a while. She may decide at a later point to move closer to her kids and grandkids. He has been doing a contract job, and most likely will exit it soon – but it is up to him. Then, when she is eventually by herself, to give herself time and not rush any decisions.
Challenging for both H and W.
My mom cared for her mother when my grandmother became a widow, and also for an elderly aunt at the very end of that life. Now, my mom is obsessed with “not being a burden” to the extent she is such an obstinate, self-sabotaging danger and a lot of work to persuade for the smallest things. I assume she didn’t like caring for her mom and is trying to spare us (it all seemed fine to teenage me). That doesn’t explain stuff like she won’t take medicine. She won’t give up driving, or going up and down the basement stairs, etc..
My inlaws have watched all this play out and it has made absolutely zero difference in their behavior. They live in a sprawling multi-level home with no exit plan. Despite many health issues, they persist in this fiction that they will be fine until their 90’s (they are early 80’s). SO frustrating.
They all associate age with death and limitation. They can’t see retirement communities with tiered care as a chance to live fully while they can, instead of being burdened with house stuff and healthcare. They make estate plans and wills, but have no plan at all for being alive and old.
DH and I have a notebooks of illustrations of whatnot to do. At 75, we have to assess our health and living, and at 80 we intend to massively downsize and spare our children all of this.
I was a caregiver for my dad who made it to 99. Mom got to 93. One aunt recently died at 97 and the other one is alive and lively (relatively) at 96–said she wants a good party at 100. Everyone else made it to very late 80’s. So a good gene line. They were all practical–used a walker if needed etc. but I think all of them considered themselves “young” and certainly younger than all those other “old people”.
I do think one factor that always skirted physical issues is they all have resided in ranch type homes with no stairs. One aunt who is single moved voluntarily long ago to a facility for convenience (and no stairs). So we never had to move anybody out of their home for safety sake. That certainly made things easier.
My first thought was what types of communities and support systems are available for us as we turn old? It used to be families which were larger and extended. Then it was “nursing homes”. Then “continuing care facilities”. Now there are some new paradigms (family homes, co-housing for seniors, the “village” concept, and more).
Just as it is hard to be a parent without support of family, neighbors, friends or others, it is equally hard to be a caregiver without support. I’d personally like to be part of a community, so that not all of the support is supplied by our children. That’s harder to achieve with so much mobility.
We haven’t figured it out yet – but it is definitely on our minds.
My in laws purchased LTC and insisted that they didn’t want to be a burden. They moved into an AL facility as FIL’s health failed. MIL let the staff do everything for her H of 70 years; she didn’t help him. But … after he died, it wasn’t long before she started burdening SIL. It’s been three years now, and although she moved to an AL facility closer to SIL two years ago, she acts like a two year old & like SIL is her mother. So while she intended not to be a burden, she has definitely become one. SIL, H and I have had a lot of discussions about why this is the case, but it’s pretty much a mystery. Some of it seems to be rooted in an old fashioned idea that the daughter is responsible for the mother - she keeps telling SIL that it’s so sad that she doesn’t have a daughter, because “who will take care of you?” SIL has a husband and son. I guess sometimes certain beliefs are deeply ingrained, and even though she didn’t want to do what she’s doing, here we are.
I think that is an old fashioned way of thinking.
The woman stay home and do the caretaking. I find my mom and my mil have some notions that I don’t. Like my mil never calls her son, she doesn’t even has his phone number. She will only call my phone. I do “let” him answer. The joys of caller ID! She acts like it’s a landline.
My ex sil got so tired of this, she refused to answer her phone until my mil called her son.
I do wonder about mobility and aging. My sibling think the answer is to move where the kids settle, her kids will probably end up in the town they grew up in. I don’t care for where my kids have settled. Do I move to a place I don’t want to live? That’s more expensive? So far, my husband and I are happy where we live. But it’s not near either kid. Or where they grew up. Makes me sad but I don’t know what the solution is.
I am in my early 70’s and have already sold the house and downsized. I am in the midst of deciding where to live, with the next 10-15 years in mind as well as my kids. I feel I am not old enough for a Continuing Care Retirement Community (apparently my age is ideal but the age of residents has moved up) but have some issues managing my own condo or house. Renting around here is impossible but looking at that too. My kids are starting to help me which is not what I want! I took care of my mother for 8 years. My kids are just starting to blossom.
I thought this was good. I only cried once.
Hospice nurse came to see my mom today and things are progressing quickly, it seems.
Mom is too weak to weigh on a scale, but her arm circumference has dropped such that they are calling it significant weight loss. Her BP was 79/50 with an oxygen rate of 91%. Said that she’s retaining water. Told my sister that she thinks maybe three months.
ETA: Just talked to my sister out of earshot of my mom, and my sister thinks it’ll be two weeks! This is her fourth time with hospice so I tend to believe her. My dh and I were already planning to go up tomorrow afternoon for several days so I’m glad to be able to put eyes on the situation.
Nurse Hadley seems like a very dear young woman. I think her book will be very interesting—will have to see if my library carries it.
My youngest brother and my SIL are going through all of this now with her mom. Three years ago, SIL’s mom (mid-80s) was still in her own house, which was beautifully kept up, tending her lovely gardens, and she invited me over for dinner while I was in town with B and SIL. She was totally with it intellectually. Talked art, history, current events, etc.
Shortly afterwards, she was dx’d with breast cancer and started treatment. Did well for about a year and a half, when it came back and spread. At about the same time. she was dx’d wth dementia. House has been sold, she is living with my B and SIL, and she is in the late stages of dementia now. It has been an incredibly fast and steep decline. SIL said the dementia made the cancer treatment plan fairly straightforward; they are dealing with the cancer only to the extent that they can keep pain under control. SIL hasn’t been to her job in four months; her boss loves her, so I think is holding her position at this point.
Meanwhile, SIL’s sibs (who all lived closer to Mom than my SIL) are demanding their share of the house proceeds NOW. Um, no. That money is for her care, and Medicaid will claw back any distributions now. And oh, do the sibs howl when SIL uses it for things Mom needs that aren’t covered under Medicare.
I pray she doesn’t suffer much longer. I wish that as much for her as for her dear daughter.
Well, I’m on waiting list to get Nurse Harley’s book, “In Between” at our public library system. I’m #30 on list and they have 6 copies so they estimate zI will get it in 6 weeks. It’s an ebook.
That’s so incredibly sad.
To demand their piece of the pie while their mother is suffering terribly seems the cruelest thing
It’s worse than sad, it’s awfully selfish! People show their true colors and often it’s not pretty—the true pettiness is best kept hidden. Hard to unsee and un-remember these unattractive aspects.
Can someone slap me the next time I say that I believe my sister?
I get here, and Mom looks great. Certainly no worse than when I was here three weeks ago. She ate 3/4 of a hamburger and a VDay cookie I brought her and ice cream and a couple of bites of dh’s VDay cake. She peed like a racehorse; my sister was sure that her kidneys were shutting down. Turns out the home health aide hasn’t been here since Friday so she hasn’t had a bath. I’ll fix that tomorrow.
Meanwhile, dh is on a tear, cleaning out all this accumulated crap that no one will notice is cleaned out. I’m making him leave some stuff so the others don’t get suspicious. lol I was helping but said that I’m tapping out and that he’s free to keep going on his own. I’m so tired, physically and emotionally.
SIL has been dealing with these sibs for years. Sigh. She is keeping records to the penny of what she’s spending on her mom. I’m glad she feels she can contact me for advice and venting, though she and my brother are very thorough types and have things well in hand. The emotional part is still hard, though.
Wow, I looked at several excellent you tube presentations - a few which were Frontline episodes from Nov 2010 ‘Facing Death’ and more recent Feb 2015. I first had looked at the Jen Hatmaker “Encountering Life’s Final Moments” with interview with Hadley Vlahos RN (who authored the book “The Inbetween: Unforgettable Encounters…” and Hadley’s interview with The Trauma Therapist, Guy. Some overlap on those two interviews. Got a good sense of Hadley’s career journey. Also saw the clip about a former patient saving Hadley’s family (see the oven fire story) - where she bought a frozen pizza even though they were planning to order a pizza from their favorite order place - but couldn’t get their pizza order through on the phone. It turns out they had a gas leak, and if they had not found it with their oven, the family was told they would have died that night from the gas leak.
Can look up 5 Wishes on Wikipedia to get the jest of the 5 wishes.
Important for patient and family to say what their fears are and what their goals are.
I am familiar with Hospice in our area, and if I needed Hospice for a family member here, I would have to do research into what is going on currently. It depends on the primary nurse you have and on call; ability of the nurse to get the meds and supplies needed at home when they are needed versus going to a Hospice Care facility. I worked in Skilled Care, and saw several patients on Hospice, with varying results from their Hospice care provider.
I stopped with the Frontline episode on Assisted Living (done in 2013) - at some point I may watch that. State laws have evolved since that episode, but in part of that clip “state regulators are not willing to look under the rock of Assisted Living…”. I know that episode had a for profit memory care/assisted living place where their own guidelines were not followed; they talked about the big amount of money being spent out of pocket by people living in these AL places.
Best lessons and advice, can learn a lot.
Also Dr Atul Gawande (author of Being Mortal) on the Frontline episode with his own family experiences with his dad.
Anderson Cooper’s podcast “All there is” is entirely about grief, and on the second season.
Yes, Nurse Hadley is very charismatic and speaks so movingly about good deaths and the mysteries of life and death. She seems like a very cheerful person and has over 3 million followers.