Dismantling home care

[Anonymous]

Last summer, after a long period of physical decline, my elderly father had serious health emergencies prompting me to rush home and spend weeks at my parents’ house getting him out of a miserable rehab situation and set up with shifts of daily home care.
He’s now doing tremendously better, better than he has been for years, and is stable and happy.
To me this is clearly because he is *finally* getting constant, high-quality care—Someone keeping him clean, managing his medications, making sure he eats properly, helping him move around safely, interacting with him socially.
However my mom does not like people in the house and parents have now decided he is doing so well they no longer “need” this care and told me today of their plans to dismantle it.
I am trying to manage my frustration and rage about this. Getting this all set up was not easy! Without close care, I feel that he will inevitably decline again, have emergencies, and then they will expect/need me to get everything back in place. All of this is to feed their fantasy that they are getting “better” and “back to normal” rather than being in their late 80s and needing help. I told them of my concerns about what will happen if they do not have consistent help at home, but at the end of the day they will make their own decisions and I can only watch. And I know I could leave them to suffer natural consequences, but they are my parents and I am of course going to try to help them if they need it. This all just feel so unnecessary.

[Anonymous]

I’m frustrated for you OP. If you found good quality people keep in touch with them in case you’re allowed to bring them back in. I know how difficult it is to find good care.

I think our kids are going to have it so easy when we age because of what we all have to deal with in this current elder population. I refuse to behave like my mom. Put me in a home and leave me there, live your life.

[Anonymous]

Anonymous wrote:I’m frustrated for you OP. If you found good quality people keep in touch with them in case you’re allowed to bring them back in. I know how difficult it is to find good care.

I think our kids are going to have it so easy when we age because of what we all have to deal with in this current elder population. I refuse to behave like my mom. Put me in a home and leave me there, live your life.

NP. My dad said this for years. Then it happened to him and there was never a moment where he didn't expect me to drop everything to take care of him. It is partly based out of fear, and a fear reaction is far stronger than a regulated reaction when everything is going fine. Everything is great in theory, but reality is a whole other issue.

[Anonymous]

OP, as already stated, keep all contacts. We did this and had to reestablish care and it was much easier the second time around. Not easy, of course, but easier.

Also, perhaps convince them to keep one person on part time, especially if you don't live there.

[Anonymous]

Anonymous wrote:I’m frustrated for you OP. If you found good quality people keep in touch with them in case you’re allowed to bring them back in. I know how difficult it is to find good care.

I think our kids are going to have it so easy when we age because of what we all have to deal with in this current elder population. I refuse to behave like my mom. Put me in a home and leave me there, live your life.

You say that now but...when you actually have to live it every day you might have different thoughts

[Anonymous]

Is it mom the driver for dismantling in home care? Try to have a private talk with dad to get his input. She may have coerced him. Also, don't underestimate the caregivers! Get them on your team and ask them to connect more with mom. If dad is doing well enough to stay home alone for a couple of hours, the caregiver can offer to take mom shopping, or to do something she enjoys… movie, bingo, Taylor Swift concert

[Anonymous]

I've lived this and made myself ill. Took my own crisis to set firm boundaries. If they decide not to have care, it's on them, but I was clear about what I could NOT do anymore. I also made them agree to a case manager checking on things who could quickly get things in place if needed. That said, I have been warned these age in place firms can be really unethical and use scare tactics to not have them consider residential and promise the moon and don't deliver, but that's another post. I have no choice because I am unable physically to do this anymore and they have truly taken advantage and would gladly have me leave my spouse and kids to cater to them. So it isn't ideal, but at least someone is monitoring and can get help in place quickly when needed.

[Anonymous]

My condolences to you OP for the frustration and sadness you are feeling over this situation.

I have just ended a decade long stint working in home health care, mostly for elders, and I can only attest that this is a very common situation that adult children encounter. I myself have been physically kicked out of a home by the elders whose children hired me to help them - admittedly that incident involved a man who was well along the path of dementia and whose daughter told me he had always been controlling and mean, with dementia only exacerbating his ugliness.

I'm not suggesting your parents are ugly personalities by any means. But many elders are very resistant to seeing their situation for what it is, that they are no longer as independent and capable as they have been used to being for decades. It's painful to see. And you are right, he will likely decline in the absence of home care because your mother is probably no more capable than he is of ensuring that he gets the proper nutrition etc. that is required to keep him as optimally healthy as possible at his age.

Before I became a home health provider I was an attorney (still am, inactive license, left because of stress related illness) and I had a few cases over the years where as a county attorney I had to file petitions to involuntarily commit elders who had become cognitively damaged by dehydration or malnutrition and became a danger to themselves or others - one elderly rancher living alone pulled a gun on his ranch hand because he had become psychotic due to malnutrition. He was quickly recovered in rehab, and we worked with the family to get him in a situation where somebody could make sure he ate and drank every day.

I don't have much to offer for advice except to do as much as you can to take care of yourself as you tread this very difficult stage of life.

[Anonymous]

Thanks everyone.
We did manage to find good people, but it took time, time in which I was there dealing with things. I hate to think of letting them go. They might not come back!
My father was just doing so much worse when they were trying to manage on their own. I think they have forgotten that or minimized it in their mind. It was hard for me to watch.
It’s a weird situation because they are arguably not mentally incapacitated but at the same time I really question whether their judgment is totally sound. I know they may make different choices than me, accepting more risk to have more freedom, but still…!

[Anonymous]

Anonymous wrote:I’m frustrated for you OP. If you found good quality people keep in touch with them in case you’re allowed to bring them back in. I know how difficult it is to find good care.

I think our kids are going to have it so easy when we age because of what we all have to deal with in this current elder population. I refuse to behave like my mom. Put me in a home and leave me there, live your life.

I don’t agree that our kids will have it easy. This generation of elders took care of their parents too. They faced similar challenges and frustrations. My dad is 84 and constantly criticising the healthcare/living arrangements of other elder members while refusing appropriate care for himself and refusing to give up his drivers license (more than overdue!). Perspective comes easy when it’s someone else, but we can’t see clearly where our own emotions/wishes are involved. I really hope I don’t cause my kids the same stress I have felt caring for others but somehow I suspect they will experience lots of frustration. The best I can hope for is that I am truly independent to the end so I don’t burden them.

[Anonymous]

OP, could part of the issue be money?

[Anonymous]

Big myth that the current senior generation took care of elders. The Longitudinal Study of Generations out of California showed that boomers were the first generation to do so. Previous generations left seniors to fend for themselves, they would just move away, or go into retirement homes. That's why they are oblivious to caregiving.

My senior neighbours, so over 80, none of them did elder care and I didn't even know they had parents until they mentioned they were going to funerals.

[Anonymous]

Op, did I write this? I didn't, but I could have!

I hear you and I totally understand the frustration! Yes your father is doing better because he's getting consistent care. No, there's no going back to quote unquote normal like your mom and dad think they are. My parents literally say the same thing. They've also dismissed home care for my very disabled father. This was just in November so the frustration is still fresh.

Op, what has sort of helped me as I navigate this right now, is that I have put boundaries in my mind - for example, when he inevitably is hospitalized again, because this is inevitable, I am going to refuse to help get him back home when my mother refuses to let him go to rehab or to have home health Care scheduled. In other words, I am not lifting him into the car and heaving him out and hefting him into the house and heaving him into bed. Which is exactly what happened last time, so that's why I'm not doing it again! When they refused for him to go to rehab, and refuse to get home health care, the hospital promptly called me for pickup!

So I think setting boundary might be something to consider OP, I will note that I haven't actually had to use this boundary yet so I will definitely update where that happens lol.

It's so difficult to see our parents make these crazy decisions. My parents are intelligent people who both had respected careers and were active in the community, and yet make these completely stupid decisions. I know they can't help it so I try not to get too angry to them.

[Anonymous]

Anonymous wrote:Big myth that the current senior generation took care of elders. The Longitudinal Study of Generations out of California showed that boomers were the first generation to do so. Previous generations left seniors to fend for themselves, they would just move away, or go into retirement homes. That's why they are oblivious to caregiving.

My senior neighbours, so over 80, none of them did elder care and I didn't even know they had parents until they mentioned they were going to funerals.

Yup. My father wasn't involved. Mom left it to siblings and visited AL occasionally. Among my grandparents it ranged from 0 involvement, sometimes due to living in a different country to visiting in AL and then nursing home. There was none of this age in place and drive your adult children to an early grave madness.

[Anonymous]

Anonymous wrote:Thanks everyone.
We did manage to find good people, but it took time, time in which I was there dealing with things. I hate to think of letting them go. They might not come back!
My father was just doing so much worse when they were trying to manage on their own. I think they have forgotten that or minimized it in their mind. It was hard for me to watch.
It’s a weird situation because they are arguably not mentally incapacitated but at the same time I really question whether their judgment is totally sound. I know they may make different choices than me, accepting more risk to have more freedom, but still…!

My sympathies. It's that awful period where they have bad judgement but are still legally allowed to make their own stupid decisions. I assume your mother is slowly losing it and is pushing the caregivers out, and your father doesn't realize his loss or isn't in a position to say no.

Since I have a very direct relationship with my parents, I would pressure them to keep the framework in place, with perhaps fewer hours. And try to get power of attorney, or similar.

I'll be there in a few years with my parents, and my husband is there with his mother. She had a very sharp, rational mind until 2 years ago, and now she wants weird things to happen that are not in her best interest, and her 3 children are kept busy talking her out of each decision. She doesn't like the night caregiver, but there's no way we're getting rid of her: when she's not there, MIL gets up to use the bathroom and falls.