I am so worried about a friend, but I can't do much

[DawnM]

I guess this is more of a vent of concern.

My friend, the one who had the stroke 4 years ago, is not doing all that well.   She keeps falling.  This last fall was pretty bad, possibly broken ribs, but that is not the focus of my concern at the moment.

I feel she really needs to look into a higher level of care, but she won't.   Her grown kids don't seem to want to be bothered and are busy with their kids, etc....

She lives with her long time boyfriend, who now has dementia that is getting worse and worse.   

She doesn't want to move away from her grandkids, her boyfriend, possibly have to have a roommate as she only has medicaid, and she would be admitting that things won't get better.

I am just sitting here, 8 hours away from her, getting more and more upset at her kids, her situation, etc.....I talk to her about it and make suggestions but everything is shot down. 

That's all.    Just needed to get that out!   I have spoken to her sibling and two of her kids and no one seems to want to take on any of the responsibility for any of it, which I do understand, but something drastic WILL happen at some point.

Edited May 24 by DawnM
spelling error

[fraidycat]

Hugs. It's so hard to sit quietly on the sidelines with no ability to take action.

[Harriet Vane]

I've walked this path and you have my heartfelt sympathy. I'm so sorry. 

[Kassia]

I have too and it's so hard and frustrating to see this happening when you're helpless to do anything.  😞  

[freesia]

That is so hard. Have you ever read Being Mortal? I was surprised about how readable it was, and it had me begin to reframe some of these situation. 

[Ottakee]

1 hour ago, freesia said:

That is so hard. Have you ever read Being Mortal? I was surprised about how readable it was, and it had me begin to reframe some of these situation. 

Excellent book

[Rosie_0801]

What can her kids do if she's so unwilling to change?

My aunts screamed at us for not caring adequately for my mother. They swept in, took charge and texted us a few months later with "Sorry, didn't realise how non-compliant she is." 

It sure is hard to watch.

[marbel]

What Rosie said. Been there with an elderly parent.  I am sorry that you're seeing this with nothing to do about it. 

44 minutes ago, Rosie_0801 said:

What can her kids do if she's so unwilling to change?

My aunts screamed at us for not caring adequately for my mother. They swept in, took charge and texted us a few months later with "Sorry, didn't realise how non-compliant she is." 

It sure is hard to watch.

 

Edited May 24 by marbel

[BusyMom5]

I was going to comment the same about the kids- If she doesn't want to move, their only choice is to wait until she breaks a hip or leg and is forced into a higher care facility.  It's sad and extremely frustrating!  My grandma also needs the next level of care- not a nursing home, but a smaller apartment with someone to give meds, meals, and check on her a few times a day.  Right now it's a no-go!  If we mention it, it's like we are terrible,  horrible people!  Even helping out and cleaning can be seen as intrusive.   

[DawnM]

1 hour ago, Rosie_0801 said:

What can her kids do if she's so unwilling to change?

My aunts screamed at us for not caring adequately for my mother. They swept in, took charge and texted us a few months later with "Sorry, didn't realise how non-compliant she is." 

It sure is hard to watch.

That's only half the problem.   The other part is that they really don't want to help.  It really irks me.   They complain constantly about anything she asks for help for.   She can't drive, and neither can the boyfriend, so she has to have rides to get food, doctors' visits, anything.   She struggles even to get them to pick up an online order for her.   It makes me want to scream.

[City Mouse]

22 minutes ago, DawnM said:

That's only half the problem.   The other part is that they really don't want to help.  It really irks me.   They complain constantly about anything she asks for help for.   She can't drive, and neither can the boyfriend, so she has to have rides to get food, doctors' visits, anything.   She struggles even to get them to pick up an online order for her.   It makes me want to scream.

Do you know that they complain? Like have you heard them, or are you just going by what your friend tells you? There is the possibility that her version is not the full version. I won’t write of novel of my own experiences, but she may not be sharing their point of view with you. 

[Ottakee]

25 minutes ago, DawnM said:

That's only half the problem.   The other part is that they really don't want to help.  It really irks me.   They complain constantly about anything she asks for help for.   She can't drive, and neither can the boyfriend, so she has to have rides to get food, doctors' visits, anything.   She struggles even to get them to pick up an online order for her.   It makes me want to scream.

From their side, they might really want her to move as caregiving is exhausting and if she moved, she could get the care she needs.

Does she own her home?  Could that be sold to pay for a nicer assisted living?

[Clemsondana]

You have my sympathies.  But, I also write this from my in-laws house, having spent the past week cleaning out stuff and helping to organize years worth of paperwork following my FIL's funeral.  They, too, dealt with a combination of post-stroke issues and dementia.  The care required is not something that can reasonably be managed by people who work full time and/or are raising kids in a separate household.  They could get themselves to doctors appointments, thankfully, since there were sometimes multiple per week.  They were determined to stay in their home, and short of having them declared  incompetent there is nothing that the kids could do to have it be otherwise.  There was paid help for a few hours each day, but they often would't let the help do much and sometimes told them not to come.  It has been very hard and very frustrating for the kids, and now they are trying to figure out how to help a very confused mother who is determined to follow what she and FIL had 'always wanted', to stay in her house.  It's brutal stuff, and I have no doubt that to outsiders it looks like the kids don't do enough.  But we are out out of state with high schoolers and do what we can to manage things and help have non-food supplies shipped to the house, and other kid and grands live nearby, check in multiple times a week, and are dealing with some issues of their own.  It's brutal stuff.  

[Harriet Vane]

16 hours ago, freesia said:

That is so hard. Have you ever read Being Mortal? I was surprised about how readable it was, and it had me begin to reframe some of these situation. 

Such a helpful book.

[Terabith]

I mean, if accepting a higher level of care meant leaving my life, boyfriend, and connections to move into a Medicaid nursing home, I think I would be rolling the dice on living on my own, even if it’s risky.  That seems like a pretty reasonable calculus. 

[PeterPan]

It's one of the remaining privileges of life to go down the way you want. She knows what's happening and she wants to do it where she wants to be. A medicaid facility with a call light and hard floors is not where anyone wants to be, and I'm with her that I'd stick it out and fall at home rather than falling at a nursing home. She's still going to have the decline, but she's where she wants to be, which is her remaining dignity. When it's no longer working (she becomes incontinent, can't get out herself out of bed, can't toilet independently), it will be different. 

[marbel]

52 minutes ago, PeterPan said:

It's one of the remaining privileges of life to go down the way you want. She knows what's happening and she wants to do it where she wants to be. A medicaid facility with a call light and hard floors is not where anyone wants to be, and I'm with her that I'd stick it out and fall at home rather than falling at a nursing home. She's still going to have the decline, but she's where she wants to be, which is her remaining dignity. When it's no longer working (she becomes incontinent, can't get out herself out of bed, can't toilet independently), it will be different. 

Well, look at it another way. She may feel she's maintaining her dignity but by insisting on remaining in her home she is setting up her kids for a heavy burden. Is there more dignity in falling at home with no one to help? Perhaps lying on the floor in pain but unable to contact anyone? Where's the dignity in forcing her kids go to court so they can move her when she is unable mentally to make her own decisions?  

(I was mostly spared this by my own parents, but starting to go through it with an in-law, and have seen it happen so many times in friends' families.)

I'd rather lose my dignity (if that's what happens) at the end of my life in a medicaid nursing home (and yes I am familiar with them) than burden my kids with a mother who can't see/accept her own limitations. 

 

Edited May 25 by marbel

[DawnM]

17 hours ago, City Mouse said:

Do you know that they complain? Like have you heard them, or are you just going by what your friend tells you? There is the possibility that her version is not the full version. I won’t write of novel of my own experiences, but she may not be sharing their point of view with you. 

I have spoken to a couple of them.   They do complain, they complained to me about having to do X or Y.   And I hear about it from extended family as well.   No, I do not live nearby, but she is like a sister to me, so I am a bit enmeshed in the family dynamics.   They call me when she goes into the hospital, that sort of thing.

I will say that they were very good about making sure someone is with her all the time when she is actually IN the hospital, it seems to be the day to day stuff they just don't want to deal with.

[regentrude]

In my own family, an elder was blind and completely bedridden. He had a housekeeper a few days a week. One son overseas, the other local. Son assessed the situation and his and his wife's abilities to provide eldercare and decided that father needed to go into a nursing home. Father refused, cut all contact with son, demanded his house key back, withdrew POA and Healthcare directive from son and transferred it to housekeeper. He stubbornly lived out his life until age 93 blind in his own bed at home, with housekeeper and home heath visits for body care etc. He was infirm but mentally competent, and it was his right to choose this way of spending his last years.

If the elder isn't willing to change their situation, the kids can't do anything. There is a point when they cannot manage the elder's needs along with the demands of their jobs and children. It isn't fair to expect them to, just because their parent chooses to age in place. Conversely, the elder has every right to choose their option, but has to realize that their family may not be able to provide care. It's hard, but as long as the old person isn't mentally incompetent,  they get to decide.

Edited May 25 by regentrude

[katilac]

1 hour ago, regentrude said:

In my own family, an elder was blind and completely bedridden. He had a housekeeper a few days a week. One son overseas, the other local. Son assessed the situation and his and his wife's abilities to provide eldercare and decided that father needed to go into a nursing home. Father refused, cut all contact with son, demanded his house key back, withdrew POA and Healthcare directive from son and transferred it to housekeeper. He stubbornly lived out his life until age 93 blind in his own bed at home, with housekeeper and home heath visits for body care etc. He was infirm but mentally competent, and it was his right to choose this way of spending his last years.

 

Jeez, did he live till 93 out of sheer spite? He had every right to make the decision to stay at home, but going no contact because his son thought he needed a nursing home sounds pretty hateful. It sounds like the son was doing his best to make difficult decisions, and dad transferring POA and healthcare directive was all that needed to be done.  

It seems really common for seniors to consider the suggestion that they need more help, or a disagreement on how much help that mightbe, to be an utter insult. It makes a tough job (adult trying to assist an aging parent) even tougher. 

Edited May 25 by katilac

[PeterPan]

23 hours ago, freesia said:

That is so hard. Have you ever read Being Mortal? I was surprised about how readable it was, and it had me begin to reframe some of these situation. 

I'm reading the amazon reviews and it talks about avoiding a "warehouse oblivion". By that does he mean nursing homes? Something else?

[Spryte]

I’m sorry, Dawn. It’s really hard to watch a friend in need that way, especially when you have your own lived experience with taking care of someone, and it looks so different.

I want to think that your friend’s kids’ complaining is the same sort that so many of us do while caregiving, which is almost more of a venting, and the frustration of knowing more help is needed than we are able to give (kids, work, life, time, energy, health). But only they would know the answer to that.

I hope that your friend gets the care she needs, and the life she wants.

[PeterPan]

4 hours ago, marbel said:

Is there more dignity in falling at home with no one to help? Perhaps lying on the floor in pain but unable to contact anyone?

Unfortunately, this can be the outcome even in a medicaid facility. 

And they answer is yes. Maybe not to you, but to some people yes. 

The standards I gave (able to get out of bed independently, able to toilet independently, etc.) are standards for staying in assisted living vs. going to a nursing home. There will come a time when this person shifts enough that they'll have deal breaker issues going on. For now, someone might not LIKE it or might not want it for themselves, but it's what the person is choosing. 

There's usually more going on than we can tell from a distance. Eventually it will get sorted. Personally, I would be *most* concerned about incontinence, hygiene, open wounds, food preparation. Even being in a facility doesn't stop falls because the person's dementia affects their ability to remember to ask for help. 

[kbutton]

So much of what kids can do is determined by their own age/stage/health as well as proximity to parents and local services.

At the same time…I have tons of relatives who have lived long and never needed nursing care (or only did so temporarily because of an acute need). One elder is still doing fabulous at home, and the most difficult about it is that this person is kind of impatient and indecisive (post child for ADHD lifelong, lol), but that’s been a forever issue.

I hear a lot of perspectives spoke here as if they are mutually exclusive, but I know lots of situations that never got as dire as what people routinely talk about here. I think sometimes the worst case scenarios get spoken of more often.

48 minutes ago, Spryte said:

I hope that your friend gets the care she needs, and the life she wants.

Me too! Moreover, I hope she comes to want an option that does work for her.

It’s entirely possible that some non-preferred options might look better when something specific shifts that changes her circumstances (boyfriend becomes unsafe, etc.).

 

[fraidycat]

It's really not the kids responsibility to; a) force her into a different living situation, or b) enable her to stay in her situation as is. A.k.a. Help her without complaint.

Friend is choosing to stay in her home, with her boyfriend, close to grandkids. All are valid choices that she gets to make as an adult.
 

Her kids get to choose how much caregiving and help they are willing and able to give. And if they also feel she needs higher level care, then perhaps NOT stepping up to enable her is the path they have chosen to help her open her eyes to reality.

 

[PeterPan]

30 minutes ago, kbutton said:

So much of what kids can do is determined by

And anxiety. 

Fwiw, I think it's also ok to say that declining sucks. I was watching a hospice video about how to tell someone they're dying, and it said to just agree with them when they said it sucks. I thought that was weird till someone said it to me and I realized I just need to agree. 

It SUCKS that people fall as their bodies decline. It SUCKS that their skin breaks down, their minds go, their kidneys stop working well, their hearts slow down. It sucks a lot.

What happened when we didn't have grocery stores and cars to bring us help and food? Did we just work till we keeled over? Did it suck less? We died so dramatically/precipitously we didn't go through the THIS SUCKS phase? I don't know. 

I just think it's ok to say it sucks to see your friend in this stage. 

[PeterPan]

5 minutes ago, fraidycat said:

responsibility

It's such a good point you've made. I would look at basic things, like if she didn't have kids would a court put her in a nursing home? It would take a precipitous event for social workers to step in like that, and that hasn't happened.

[Ottakee]

36 minutes ago, PeterPan said:

And anxiety. 

Fwiw, I think it's also ok to say that declining sucks. I was watching a hospice video about how to tell someone they're dying, and it said to just agree with them when they said it sucks. I thought that was weird till someone said it to me and I realized I just need to agree. 

It SUCKS that people fall as their bodies decline. It SUCKS that their skin breaks down, their minds go, their kidneys stop working well, their hearts slow down. It sucks a lot.

What happened when we didn't have grocery stores and cars to bring us help and food? Did we just work till we keeled over? Did it suck less? We died so dramatically/precipitously we didn't go through the THIS SUCKS phase? I don't know. 

I just think it's ok to say it sucks to see your friend in this stage. 

Often modern medicine prolongs death without saving a life.   Years ago pneumonia or a UTI would lead to death in an elderly patient, now we have antibiotics.  We have a lot more meds for cancers, high blood pressure, diabetes, heart conditions , etc.

A friend of mine is a hospitalist and she has families wanting CPR and a vent for terminally ill elderly loved ones.

[freesia]

4 hours ago, PeterPan said:

I'm reading the amazon reviews and it talks about avoiding a "warehouse oblivion". By that does he mean nursing homes? Something else?

I don’t remember that phrasing at all. It’s really about a doctor’s journey in exploring what humane end of life care means. I had thought it would be somehow heavy handed or proscriptive, but didn’t find it that way at all. There is a lot of narrative. Rather than condemn nursing homes, it more explores why an elder might prefer lesser care/safety at home and what quality end of life care might actually mean ( being a doctor, he started from a medical/safe stance) and he also explores whether the safe environments actually do extend life. It was really interesting and gently helps the reader begin to evaluate and think through the same issues. 

[Harriet Vane]

1 hour ago, freesia said:

I don’t remember that phrasing at all. It’s really about a doctor’s journey in exploring what humane end of life care means. I had thought it would be somehow heavy handed or proscriptive, but didn’t find it that way at all. There is a lot of narrative. Rather than condemn nursing homes, it more explores why an elder might prefer lesser care/safety at home and what quality end of life care might actually mean ( being a doctor, he started from a medical/safe stance) and he also explores whether the safe environments actually do extend life. It was really interesting and gently helps the reader begin to evaluate and think through the same issues. 

I agree. He’s not opposed to any option. Rather, he encourages conversation and evaluation of what each person values and how best to set up a situation that reflects those values.

[Laura Corin]

8 hours ago, Ottakee said:

Often modern medicine prolongs death without saving a life.   Years ago pneumonia or a UTI would lead to death in an elderly patient, now we have antibiotics.  We have a lot more meds for cancers, high blood pressure, diabetes, heart conditions , etc.

A friend of mine is a hospitalist and she has families wanting CPR and a vent for terminally ill elderly loved ones.

My mum wrote a living will saying that she did not want to go for a hospital stay. This helped the family and medical staff.

So when she fell and cut her head, she went to Accident and Emergency for stitches then back to the care home. When she developed pneumonia and couldn't take antibiotics orally, her wishes were respected and she slipped away peacefully.  She was 98.

[Ottakee]

9 hours ago, Laura Corin said:

My mum wrote a living will saying that she did not want to go for a hospital stay. This helped the family and medical staff.

So when she fell and cut her head, she went to Accident and Emergency for stitches then back to the care home. When she developed pneumonia and couldn't take antibiotics orally, her wishes were respected and she slipped away peacefully.  She was 98.

So glad you could discuss wishes before it got bad.

That is so important.  I am a huge advocate for hospice services, and earlier rather than later. It has helped so much with several of my family members.

[bookbard]

I also think there's a difference between people who are alone and lonely and those who are not. My MIL chose to go into a nursing home because she was living alone in a tiny house (probably smaller than the nursing home room she moved into!) and she couldn't go anywhere or do anything. Once in the nursing home, she had a lot more social interaction, they had outings, nice food set up like a restaurant with wine etc. She had been in the nursing home industry herself so was able to choose carefully which place to go to. She was a lot happier. 

[DawnM]

6 hours ago, Ottakee said:

So glad you could discuss wishes before it got bad.

That is so important.  I am a huge advocate for hospice services, and earlier rather than later. It has helped so much with several of my family members.

My dad wouldn't go into hospice until he knew he was dying, and even then, I was the one who pushed for it and I am not sure at that point he even understood what was going on.

We tried to get hospice (at home, not the hospice house he ended up going to where he passed away) for him a year prior but he wanted to be able to receive medical treatment, not just palliative care, and I understood.   He was a physician and letting go of some of that was not ok with him.

 

[Laura Corin]

13 hours ago, Ottakee said:

So glad you could discuss wishes before it got bad.

That is so important.  I am a huge advocate for hospice services, and earlier rather than later. It has helped so much with several of my family members.

Just so that people are clear about the difference  - my mother was not in hospice care. She did not have a terminal illness. She was just very old and tired, and did not want her life prolonged. 

[Hannah]

32 minutes ago, Laura Corin said:

Just so that people are clear about the difference  - my mother was not in hospice care. She did not have a terminal illness. She was just very old and tired, and did not want her life prolonged. 

 

My father, at 82, still rides his motorcycle and is in excellent health, both mentally and physically. He has all his affairs in order, including having arranged for me to have a second card on his bank account, granted me power of attorney, and provided a copy of his living will. Additionally, he's shared his actual will with me, as I am his executor. I appreciate his openness in discussing and preparing all these matters, as it will significantly ease the process for everyone, including his wife, when the time comes.

The other day Dad sent me a receipt for their niches in the cremation wall at their church!!  He has chosen exactly where they will be to overlook the sea and told me that it would save me the effort and cost of hiring a boat and spreading his ashes, as the view would be enough.  He included the instruction that he wants his friend's harmonica, which was a gift to him, slipped into the box as friend's wife overlooked doing it when he passed and that his niche is just two away from his friend and that may give her some comfort!

[Laura Corin]

10 minutes ago, Hannah said:

 

My father, at 82, still rides his motorcycle and is in excellent health, both mentally and physically. He has all his affairs in order, including having arranged for me to have a second card on his bank account, granted me power of attorney, and provided a copy of his living will. Additionally, he's shared his actual will with me, as I am his executor. I appreciate his openness in discussing and preparing all these matters, as it will significantly ease the process for everyone, including his wife, when the time comes.

The other day Dad sent me a receipt for their niches in the cremation wall at their church!!  He has chosen exactly where they will be to overlook the sea and told me that it would save me the effort and cost of hiring a boat and spreading his ashes, as the view would be enough.  He included the instruction that he wants his friend's harmonica, which was a gift to him, slipped into the box as friend's wife overlooked doing it when he passed and that his niche is just two away from his friend and that may give her some comfort!

My mum rode her motorbike until we had a couple of particularly bad winters when she was  around 85. I'm sure the bike and lots of functional walking kept her strong.

It's such a gift when people make preparations.  We are trying to make things simple for our kids too - easily accessible financial information, plus updated wills and POA in place. We are still working on the living wills though.

[Hannah]

6 minutes ago, Laura Corin said:

My mum rode her motorbike until we had a couple of particularly bad winters when she was around 85. I'm sure the bike and lots of functional walking kept her strong.

This part of her sounds very cool!

I can't link the site directly at the moment, but this article summarizes what you can put into a "a check list for checking out".  I must admit that ours is not yet complete.

https://www.news24.com/life/wellness/mind/livebydesign/live-by-design-purple-file-a-check-list-for-checking-out-20230430-3