Crisis, precarious new normal, repeat

[Anonymous]

My mid-80s father with Parkinson’s and other health problems has been going to the ER every month now for like a year. Sometimes he’s hospitalized for a few days to a week, sometimes sent home fairly quickly.
*Every single time* the goal of my parents has been to get him home ASAP with no help here because they think they are fine and can live independently. They treat every event like a singular event.
It’s just so frustrating because every time he comes home from the hospital now I am just thinking that he is being set up for yet another crisis. Last week he was discharged from the hospital and then my mother had to call 911 literally two hours after he was home because he was lying on the floor unresponsive.
I’ve tried to point out that if they had more help here (they can afford it) they could maybe prevent some of these emergencies and have a better overall quality of life but they are just so resistant to doing anything but pretending they are perfectly fine middle-age people who can live independently at home forever.
God forbid I bring up the issue of palliative care or hospice. They don’t want to hear it.
I know these are their choices and their lives to live and what do I know, maybe living independently is actually keeping them going? But it just seems so insane to me and I cannot imagine choosing this for myself. At least my Dad no longer drives. I know in their minds they have made major concessions like that. But I still think they are just living in denial and it is so painful to watch.
I’d welcome any advice but really I just need to vent. I know there’s nothing I can do. They’re adults and it’s their choice.

[Anonymous]

Will they let you speak to the doctors and hospital?

[Anonymous]

I do speak to them. I explain my concerns. But my parents are mentally competent and make their own decisions. On one occasion when he was particularly ill the social worker from the hospital called and said they had concerns about him going home with my elderly mom. I was like, “obviously this has not escaped my attention and I am concerned too.” That time he went to rehab. A couple weeks later he was back home. I begged them to let me hire a home caregiver for at least a week after that and they did but then when the week was up they promptly fired the caregiver. It’s just so crazy to me. The medication management alone is a nightmare for the two of them and they *mostly* do okay.

[Anonymous]

They are living life on their terms, and if the repeated hospitalizations and horror of finding a spouse unresponsive are not enough to turn the dial even a little bit then there is truly nothing you can do except make your own decision about your limits and to what extent you’re willing to swoop in after a crisis.

Eventually there will be a crisis that forces the issue. Until then, your parents have agency to make decisions about how they want to live, even if they seem to be bad ones.

[Anonymous]

Anonymous wrote:They are living life on their terms, and if the repeated hospitalizations and horror of finding a spouse unresponsive are not enough to turn the dial even a little bit then there is truly nothing you can do except make your own decision about your limits and to what extent you’re willing to swoop in after a crisis.

Eventually there will be a crisis that forces the issue. Until then, your parents have agency to make decisions about how they want to live, even if they seem to be bad ones.

NP. I agree with this, but I'm also so sympathetic, OP. It sounds absolutely terrible, frustrating, and enraging to have to watch this. Im so sorry.

[Anonymous]

I was on this merry-go-round with my mother for about 15 years, with the incidents becoming progressively worse and brief stays in rehab. The event that finally forced the issue for her was the visiting nurses calling the county aging office bc she was incapable of handling her medications and a danger to herself.

I will echo the others who said it's their choice and you need to decide how far you're willing to go to assist/intervene. It will deplete you.

[Anonymous]

I think this is so common. My parents did this. I have many friends with parents who did this.

Eventually there will be a crisis big enough that it will all come to an end. That is the brutal reality. Just point that out to your parents in stark terms. Eventually they will get discharged home and will get someplace not of their own choosing OR they'll die in a hospital, which is probably not the ending they want. I will say though the bar is EXTREMELY low to get sent home. The hospital just doesn't care and will send people home in a pretty appalling state.

Hugs OP.

[Anonymous]

Anonymous wrote:I think this is so common. My parents did this. I have many friends with parents who did this.

Eventually there will be a crisis big enough that it will all come to an end. That is the brutal reality. Just point that out to your parents in stark terms. Eventually they will get discharged home and will get someplace not of their own choosing OR they'll die in a hospital, which is probably not the ending they want. I will say though the bar is EXTREMELY low to get sent home. The hospital just doesn't care and will send people home in a pretty appalling state.

Hugs OP.

Sorry this is garbled. Eventually they will not get discharged home if they can't properly care for themselves or the other parent isn't around and they will get sent where ever the social worker can find a slot.

[Anonymous]

Palliative care or hospice is not really what they need. I would look into assisted living places near them. If they do have money, they can be a very good solution. They can live in their own apartment but have access to a dining room for meals and laundry service and so on. Look at continuing care communities.

[Anonymous]

My FIL had Parkinson’s and my in laws also refused help. Many disasters, bone breaks, etc. All you can do is accept that these are their decisions to make, and decide what your limits are in helping.

[Anonymous]

We're about 11 years into this as my Mom has really struggled since my Dad's death. She's in assisted living and has blown through all the money they had carefully set aside.

She won't go without food or housing but will soon be in whatever Medicaid bed opens up. ¯\_(ツ)_/¯

[Anonymous]

This is a beauty of a continuing care community -- they can leave the hospital for assisted living or skilled nursing right in the same community where their independent living unit is.

Well, to me that's the beauty of a CCRC. My ILs didn't see it that way and both died in the hospital they kept bouncing back to after leaving before they were anywhere near recovered. In the hospital's defense, they weren't necessarily sick enough to be in the hospital and they lied like rugs to be discharged.

[Anonymous]

OP, they may warm to a home health aide if they really find someone they connect with. Sometimes it takes a few tries, but then you find someone who really "fits" with the family and they feel comfortable having his or her help.

[Anonymous]

Anonymous wrote:I think this is so common. My parents did this. I have many friends with parents who did this.

Eventually there will be a crisis big enough that it will all come to an end. That is the brutal reality. Just point that out to your parents in stark terms. Eventually they will get discharged home and will get someplace not of their own choosing OR they'll die in a hospital, which is probably not the ending they want. I will say though the bar is EXTREMELY low to get sent home. The hospital just doesn't care and will send people home in a pretty appalling state.

Hugs OP.

If a patient has capacity to make their own decisions (and it’s not uncommon for psychiatry to to a bedside evaluation to confirm this), the hospital has no choice but to send them home, because the hospital is not a LTC facility. All they can do is refer to APS to follow the patient in the community.

[Anonymous]

^^It’s not because they “don’t care.”