Back in the hospital for round four

[Anonymous]

Anonymous wrote:Have you looked into what kinds of medical care that can be declined? It seems like you're drawing out the inevitable.

I would think you could decline care for sepsis and this might be a quicker and more merciful end?

[Anonymous]

OP, is she eligible for Hospice? It sounds like it is time. She's in pain, has dementia and zero quality of life.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Have you looked into what kinds of medical care that can be declined? It seems like you're drawing out the inevitable.

I would think you could decline care for sepsis and this might be a quicker and more merciful end?

OP, btdt. It is hard. But she really needs a more merciful end.

[Anonymous]

Anonymous wrote:OP, is she eligible for Hospice? It sounds like it is time. She's in pain, has dementia and zero quality of life.

Been through a similar situation and enrolling in hospice was something I did too late. The UTIs/sepsis just kept coming back and getting harder and harder to fight. Falls also kept happening. It was so awful. The hospice at least ensured there was no pain and agitation, and death was peaceful. The mindset shift from treatment to quality of life was very hard, but looking back I should have done it sooner. I also didn't realize that only the hospice would truly be able to get the pain/agitation under control because they were the only ones willing to prescribe and dose Dilaudid/Ativan at high enough levels to make a difference. They also provided oversight for the memory care place, kind of like a check and balance.

[Anonymous]

My father was like this. In and out of the hospital, weaker each time and with some dementia. We decided to no longer treat aggressively when he got his next infection (this was several years ago). It’s a very hard decision for sure, heartbreaking, but it was the right one. US hospitals will continue to try and treat, so maybe start to think about hospice or palliative care (not to make your work life easier, but as it may just be your moms time since she keeps getting sick). On his last admission, we did not give antibiotics, we enrolled in hospice, he went home and he died shortly following. It was all really sad, but it was his time.

[Anonymous]

I would see if declining treatment for the sepsis would create a short term hospice situation. I’m not familiar with sepsis but I declined treatment for pneumonia for my mom. She passed a couple days later.

[Anonymous]

Thanks for all of the insight and suggestions and stories. Sepsis turned out to not be sepsis, from what I understand her UTI was from E. coli and that was the same bacteria in her blood. So not quite sepsis? They didn’t really explain it well.

She’s on the mend but now we’re back in the pattern of them drugging her heavily at night so she’s completely comatose during the day. When she comes out of the narcotic she actually is more alert and with it than I’ve seen in a very long time, it makes me wonder if she hasn’t been fighting an infection in awhile. I told the hospital if they want to keep her there forever that’s the way to do it, she’ll never be coherent enough to leave. Hopefully we spring her today (if they didn’t give her a high dose narcotic last night).

I agree about hospice and/or palliative care. When she was in the hospital last month they seemed to think palliative care was appropriate and it was too soon for hospice. She only got out of rehab two weeks ago today and I moved her to memory care so it’s been a busy two weeks. I am going to engage hospice and see if I can’t get some help. Dementia is a nasty beast, and getting old seems to really suck.

Thanks for all the support.

[Anonymous]

Thinking of you and sending a supportive hug.

[Anonymous]

This stage is really tough. Please take care of yourself. It can feel like there are no good options. Aging is not for the faint of heart.

The hospice I used was Goodwin House and they were amazing. They came to the memory care place and sent a CNA for extra bathing, plus supplies. They can evaluate right at the hospital.

The other big hospice in the area is Capital Caring. They have an in patient unit at Sibley Hospital if your mom qualifies for it. You could ask for her to be discharged there. It can be used as respite until you can figure out next steps (can only stay 2 weeks or less). But it is covered by Medicare once you are enrolled on hospice.

[Anonymous]

"Against medical advice" is a phrase everyone needs to know. When declining treatment, any treatment. Hospitals/Doctors need to hear it so they are not held liable. Although not essential, it's helpful to have a strong showing of family, in person or by phone, so the doctors get the assurance that this is a family decision. They are always guarding against the crazy one relative that might cause problems for them.

[Anonymous]

Anonymous wrote:"Against medical advice" is a phrase everyone needs to know. When declining treatment, any treatment. Hospitals/Doctors need to hear it so they are not held liable. Although not essential, it's helpful to have a strong showing of family, in person or by phone, so the doctors get the assurance that this is a family decision. They are always guarding against the crazy one relative that might cause problems for them.

If there’s a doctor at the memory care, you may want to get to know them. When my 89-year-old father experienced life threatening blood pressure drop after 18 months in skilled nursing with complete delirium, my sister, who was the POA, wanted him transported to the hospital for a transfusion. The nursing home doctor called me to see
If I could talk sense into her, saying “you know, many families would choose to keep someone like this comfortable where they are.” I talked her in to doing what was right and he died 24 hours later. While making his final arrangements, I was presented with his DNR, which also clearly stated no transfusions. POA sister couldn’t even be responsible enough to abide his wishes. Does your mom have an advanced directive? Does she really want these repeated hospital stays? It’s easy for adults to keep their parents alive longer than they should out of a sense of duty and guilt.

[Anonymous]

Anonymous wrote:Thanks for all of the insight and suggestions and stories. Sepsis turned out to not be sepsis, from what I understand her UTI was from E. coli and that was the same bacteria in her blood. So not quite sepsis? They didn’t really explain it well.

She’s on the mend but now we’re back in the pattern of them drugging her heavily at night so she’s completely comatose during the day. When she comes out of the narcotic she actually is more alert and with it than I’ve seen in a very long time, it makes me wonder if she hasn’t been fighting an infection in awhile. I told the hospital if they want to keep her there forever that’s the way to do it, she’ll never be coherent enough to leave. Hopefully we spring her today (if they didn’t give her a high dose narcotic last night).

I agree about hospice and/or palliative care. When she was in the hospital last month they seemed to think palliative care was appropriate and it was too soon for hospice. She only got out of rehab two weeks ago today and I moved her to memory care so it’s been a busy two weeks. I am going to engage hospice and see if I can’t get some help. Dementia is a nasty beast, and getting old seems to really suck.

Thanks for all the support.

If she had bacteria in the blood she had sepsis. Consider declining antibiotics from here on out.

[Anonymous]

In Montgomery County, Casey House is excellent -- and the only hospice facility in the county. We recently had a family member there and it was the first time she had been peacefully resting thanks to the Dilaudid.

[Anonymous]

Anonymous wrote:In Montgomery County, Casey House is excellent -- and the only hospice facility in the county. We recently had a family member there and it was the first time she had been peacefully resting thanks to the Dilaudid.

This is the OP and the Casey House is where my dad passed away. It was absolutely amazing. We ended up donating to them several years after, I can’t say enough good things about them. They really made a horrible time tolerable.

[Anonymous]

Anonymous wrote:

Anonymous wrote:So sorry OP. Is your mother far away from you? Do you have to be there for all the transports?

She’s only about ten minutes up the road. I moved her closer a few years ago after years of commuting an hour or more each way every time she couldn’t figure out how to do something she used to know how to do.

I like to be there for the transports due to her inability to communicate not only needs but who she is (things like her arm is perpetually sore due to arthritis so she’s best to approach from the opposite side and she needs things explained like she’s a toddler in order to get her to cooperate). Ambulance transfer is easy but I now have to pay a company to transfer her by wheelchair because she no longer has the strength to get in and out of the car.

Memory care doesn’t provide transportation? Really??