When is right time for hospice?

[Anonymous]

Parent is entering the sixth or seventh stage of dementia, which I think is considered an end stage disease.

While reviewing parent's advance directive, I see they did not want medications and medical interventions at a certain point. My question is that I don't know what that point would be and assume a doctor would indicate when the right time is to withdraw medicartions. Is it now when they are in the final stages of this disease, or does that come later when they can no longer eat...?

In the case of my now-deceased parent, hospice was started with parent would not eat. But then they'd start eating again. The situation is not linear and, therefore, was confusing to all of us in the family.

Is this something I need to discuss with the primary care doctor?

[Anonymous]

My dad was on hospice. His PCP initiated some kind of report to start the process. In my sister’s case, her oncologist initiated the process. Basically, hospice doesn’t take your word to enter their care, you need a doctor.

[Anonymous]

It's definitely something you can ask your parents physician. Hospice is not just withdrawing medication; there is more to it than that. I would start the conversation with your parents physician sooner than later though - it's possible that your parent is not yet a candidate, and they would be able to explain it to you. Or, it may be an option and they haven't raised it with you yet but would be happy to help you navigate it.

Hospice is also not just about care for the final 6 months of life. My FIL has been receiving some form of hospice for as long as I've known him (8ish years?) because he has a terminal degenerative disease. He signed a DNR, and stopped treatments that are intended to extend his life, but still takes medication that help keep his symptoms controlled to attempt to make his last years as comfortable as possible. I do not know if dementia qualifies for longer term hospice, but it's worth asking. In my FILs case, a nurse comes to my ILs home 1x/week for a quick exam/check vitals, and another nurse comes to assist with bathing him 1-2x/week. It's not full-time care so they still have to hire alot of caregivers, but its helpful because hospice manages his prescriptions so that he doesn't need to see his regular doctor as often (leaving the home is now impossible as his condition has left him bedbound at this point).

[Anonymous]

My mom with late stage dementia has been on hospice since last July. It’s an incredible resource. They took care of ordering the hospital bed, oxygen tank, all supplies (diapers, wipes, gloves). Even though my mom is in memory care they send someone to shower her a few times a week. They have music therapy, a non-denominational pastor and the nurse goes by at least weekly to check on her.

Talk to the primary doctor and see if you need a referral. Hospice will do an evaluation. If they don’t find the parent eligible maybe they can offer palliative care.

[Anonymous]

Most hospice organizations are full of good people. They deal with this everyday. They alone with her can make some decisions. Sometimes it's not the loved one who needs to act of decide. Hospice & the patient will decide. Involve hospice now. Your local organization can tell you what they can do.

[Anonymous]

Anonymous wrote:Basically, hospice doesn’t take your word to enter their care, you need a doctor.

Maybe in some jurisdictions but this was not the case when I engaged hospice for my ailing father.

[Anonymous]

Anonymous wrote:My dad was on hospice. His PCP initiated some kind of report to start the process. In my sister’s case, her oncologist initiated the process. Basically, hospice doesn’t take your word to enter their care, you need a doctor.

Yes, I know that and that makes sense.

In the case of my deceased parent, we felt hospice came too soon. But we had no choice. When a person stops eating, they can’t stay in memory care unless they are on hospice.

So I am wondering if an inability to eat is the main sign??

[Anonymous]

Anonymous wrote:My mom with late stage dementia has been on hospice since last July. It’s an incredible resource. They took care of ordering the hospital bed, oxygen tank, all supplies (diapers, wipes, gloves). Even though my mom is in memory care they send someone to shower her a few times a week. They have music therapy, a non-denominational pastor and the nurse goes by at least weekly to check on her.

Talk to the primary doctor and see if you need a referral. Hospice will do an evaluation. If they don’t find the parent eligible maybe they can offer palliative care.

Thank you all for the details!

I have reservations about hospice after reading how they make money.

In the past, hospice was horrible for my parent and not great for my grandmother. So I have reservations.

It is good to hear about the good experiences and know what is possible.

Thank you, everyone.

OP

[Anonymous]

Look for a hospice organization that's been around for a while, preferably a nonprofit. There's a lot of fraud in signing up people in LTC facilities.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My mom with late stage dementia has been on hospice since last July. It’s an incredible resource. They took care of ordering the hospital bed, oxygen tank, all supplies (diapers, wipes, gloves). Even though my mom is in memory care they send someone to shower her a few times a week. They have music therapy, a non-denominational pastor and the nurse goes by at least weekly to check on her.

Talk to the primary doctor and see if you need a referral. Hospice will do an evaluation. If they don’t find the parent eligible maybe they can offer palliative care.

Thank you all for the details!

I have reservations about hospice after reading how they make money.

In the past, hospice was horrible for my parent and not great for my grandmother. So I have reservations.

It is good to hear about the good experiences and know what is possible.

Thank you, everyone.

OP

This is the PP. When I first engaged hospice I used the one recommended by the memory care because they dealt with them often. The company lost their assigned nurse and the one who took over was awful- she never checked supplies, she didn’t communicate at all and she barely checked my mom when she did visit. I ended up switching to another hospice company and have been very happy with their services. So some are better than others.

The first company was charging Medicare almost $10k a month. The current company charges them $5k-$7k for better service. I’d bet there’s a ton of fraud.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My mom with late stage dementia has been on hospice since last July. It’s an incredible resource. They took care of ordering the hospital bed, oxygen tank, all supplies (diapers, wipes, gloves). Even though my mom is in memory care they send someone to shower her a few times a week. They have music therapy, a non-denominational pastor and the nurse goes by at least weekly to check on her.

Talk to the primary doctor and see if you need a referral. Hospice will do an evaluation. If they don’t find the parent eligible maybe they can offer palliative care.

Thank you all for the details!

I have reservations about hospice after reading how they make money.

In the past, hospice was horrible for my parent and not great for my grandmother. So I have reservations.

It is good to hear about the good experiences and know what is possible.

Thank you, everyone.

OP

There is no single entity that is Hospice. It is a type of care and there are many different organizations that provide Hospice care. Ask a nurse that you trust for their recommendations and look at recent reviews. If Hospice care isn’t right for your parent ask about palliative care.

https://www.caringinfo.org/types-of-care/what-is-the-difference-between-palliative-care-and-hospice-care/

[Anonymous]

Anonymous wrote:It's definitely something you can ask your parents physician. Hospice is not just withdrawing medication; there is more to it than that. I would start the conversation with your parents physician sooner than later though - it's possible that your parent is not yet a candidate, and they would be able to explain it to you. Or, it may be an option and they haven't raised it with you yet but would be happy to help you navigate it.

Hospice is also not just about care for the final 6 months of life. My FIL has been receiving some form of hospice for as long as I've known him (8ish years?) because he has a terminal degenerative disease. He signed a DNR, and stopped treatments that are intended to extend his life, but still takes medication that help keep his symptoms controlled to attempt to make his last years as comfortable as possible. I do not know if dementia qualifies for longer term hospice, but it's worth asking. In my FILs case, a nurse comes to my ILs home 1x/week for a quick exam/check vitals, and another nurse comes to assist with bathing him 1-2x/week. It's not full-time care so they still have to hire alot of caregivers, but its helpful because hospice manages his prescriptions so that he doesn't need to see his regular doctor as often (leaving the home is now impossible as his condition has left him bedbound at this point).

+1 My friend's father was on hospice for several years, long before he was thought to be end-stage. They offer a lot more than just final care.

[Anonymous]

Anonymous wrote:It's definitely something you can ask your parents physician. Hospice is not just withdrawing medication; there is more to it than that. I would start the conversation with your parents physician sooner than later though - it's possible that your parent is not yet a candidate, and they would be able to explain it to you. Or, it may be an option and they haven't raised it with you yet but would be happy to help you navigate it.

Hospice is also not just about care for the final 6 months of life. My FIL has been receiving some form of hospice for as long as I've known him (8ish years?) because he has a terminal degenerative disease. He signed a DNR, and stopped treatments that are intended to extend his life, but still takes medication that help keep his symptoms controlled to attempt to make his last years as comfortable as possible. I do not know if dementia qualifies for longer term hospice, but it's worth asking. In my FILs case, a nurse comes to my ILs home 1x/week for a quick exam/check vitals, and another nurse comes to assist with bathing him 1-2x/week. It's not full-time care so they still have to hire alot of caregivers, but its helpful because hospice manages his prescriptions so that he doesn't need to see his regular doctor as often (leaving the home is now impossible as his condition has left him bedbound at this point).

This is great detail. To me, hospice means DNR/stopping extending life treatments but ALSO any other medications or oxygen. It's confusing like someone said above that it's not linear.

[Anonymous]

Anonymous wrote:

Anonymous wrote:It's definitely something you can ask your parents physician. Hospice is not just withdrawing medication; there is more to it than that. I would start the conversation with your parents physician sooner than later though - it's possible that your parent is not yet a candidate, and they would be able to explain it to you. Or, it may be an option and they haven't raised it with you yet but would be happy to help you navigate it.

Hospice is also not just about care for the final 6 months of life. My FIL has been receiving some form of hospice for as long as I've known him (8ish years?) because he has a terminal degenerative disease. He signed a DNR, and stopped treatments that are intended to extend his life, but still takes medication that help keep his symptoms controlled to attempt to make his last years as comfortable as possible. I do not know if dementia qualifies for longer term hospice, but it's worth asking. In my FILs case, a nurse comes to my ILs home 1x/week for a quick exam/check vitals, and another nurse comes to assist with bathing him 1-2x/week. It's not full-time care so they still have to hire alot of caregivers, but its helpful because hospice manages his prescriptions so that he doesn't need to see his regular doctor as often (leaving the home is now impossible as his condition has left him bedbound at this point).

This is great detail. To me, hospice means DNR/stopping extending life treatments but ALSO any other medications or oxygen. It's confusing like someone said above that it's not linear.

My FIL is on many medications. There are some that hospice won’t provide, but he’s on many meds. He has Parkinson’s, so he’s on meds that help control his dyskinesia (involuntary movements), one that helps him urinate, several that help with mood (his mood is very disregulated often and meds sometimes help).

My grandpa on the other hand only received hospice for a few weeks to a month. They also had him on some meds, but slowly discontinued them as his condition worsened. He had heart and kidney failure though, and was almost 99 years old, and at some point the meds were doing more harm than good.

[Anonymous]

Anonymous wrote:Look for a hospice organization that's been around for a while, preferably a nonprofit. There's a lot of fraud in signing up people in LTC facilities.

Thank you. You are right. Someone shared an article on this forum about the fraud. Hospice makes a TON of money from the government aka us taxpayers.

OP