When is right time for hospice?

[Anonymous]

As soon as they let you (I mean the drs or hospice people or whoever makes those decisions)

[Anonymous]

Anonymous wrote:As soon as they let you (I mean the drs or hospice people or whoever makes those decisions)

+1
As soon as possible, don’t hesitate or wait.

[Anonymous]

I think if there has been significant weight loss, falls, or excessive sleeping, inability/trouble swallowing , difficulty moving/waking it’s time for evaluation. My mom was referred by her memory care for evaluation in mid stage 6 after she kept losing weight; then before the evaluation happened she fell and broke her pelvis and passed a few weeks later. Before th fall I think hospice would have been a nice weekly visit but with the fall it was almost daily.

[Anonymous]

Pp here. I want to add that we did not discontinue all meds, kept ones that would make her life easier /more comfortable including anxiety meds and we would have done antibiotics if needed for pain control etc we had already withdrawn cholesterol meds and other preventive meds in early stage 6 as per my moms wishes (discontinue life preserving meds in advanced disease). The goal of hospice for us was to bring my mom the maximum peace and minimum discomfort, physically and mentally, while acknowledging that there was no intent to cure.

[Anonymous]

There's a woman on Instagram (Hospice Nurse Julie) who is a hospice nurse. She talks all about hospice and the process of dying. My parents are quickly approaching that step and it's been educational for me to watch the videos. I think she has a book, too, but I haven't read it.

[Anonymous]

Anonymous wrote:I think if there has been significant weight loss, falls, or excessive sleeping, inability/trouble swallowing , difficulty moving/waking it’s time for evaluation. My mom was referred by her memory care for evaluation in mid stage 6 after she kept losing weight; then before the evaluation happened she fell and broke her pelvis and passed a few weeks later. Before th fall I think hospice would have been a nice weekly visit but with the fall it was almost daily.

Hospice came daily??? I have never heard of that.

I'm so sorry about your mom.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I think if there has been significant weight loss, falls, or excessive sleeping, inability/trouble swallowing , difficulty moving/waking it’s time for evaluation. My mom was referred by her memory care for evaluation in mid stage 6 after she kept losing weight; then before the evaluation happened she fell and broke her pelvis and passed a few weeks later. Before th fall I think hospice would have been a nice weekly visit but with the fall it was almost daily.

Hospice came daily??? I have never heard of that.

I'm so sorry about your mom.

DP, but yes hospice will come weekly, and then as the patient becomes weaker and progresses more towards death they come more often. So they start with weekly, then will come 2-3 times per week as they start getting weaker, and then daily once the patient is believed to be within a week of passing away.

It really varies though depending on what the specific hospice group does, where the patient lives (facility, their home, etc), and what the family wants.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I think if there has been significant weight loss, falls, or excessive sleeping, inability/trouble swallowing , difficulty moving/waking it’s time for evaluation. My mom was referred by her memory care for evaluation in mid stage 6 after she kept losing weight; then before the evaluation happened she fell and broke her pelvis and passed a few weeks later. Before th fall I think hospice would have been a nice weekly visit but with the fall it was almost daily.

Even when they start to come daily, it’s still only for an hour or so.
Hospice came daily??? I have never heard of that.

I'm so sorry about your mom.

DP, but yes hospice will come weekly, and then as the patient becomes weaker and progresses more towards death they come more often. So they start with weekly, then will come 2-3 times per week as they start getting weaker, and then daily once the patient is believed to be within a week of passing away.

It really varies though depending on what the specific hospice group does, where the patient lives (facility, their home, etc), and what the family wants.

[Anonymous]

Anonymous wrote:
I think if there has been significant weight loss, falls, or excessive sleeping, inability/trouble swallowing , difficulty moving/waking it’s time for evaluation. My mom was referred by her memory care for evaluation in mid stage 6 after she kept losing weight; then before the evaluation happened she fell and broke her pelvis and passed a few weeks later. Before th fall I think hospice would have been a nice weekly visit but with the fall it was almost daily.


Hospice came daily??? I have never heard of that.

I'm so sorry about your mom.

thank you. Yes, after her fall, we began hospice. She was pretty stable the first few days, eating and talking a bit, so they were going to come 3 days/week. But by the end of the first week she started declining/becoming agitated, and they switched to daily visits and added ativan and morphine, when they thought she was actively dying. It was up and down --at one point she seemed to stabilize, but the hospice said that she could be stable for a while, or it could be temporary so they wanted to check every day....it lasted maybe 3-4 days, with times that she was sitting up and eating a bit and responding a bit, but then she started just sleeping more and eating/drinking less and less. She was also on a fair amount of both morphine and ativan. All told, it was about a month between her fall and her passing, but it was not entirely linear.

I was glad to have hospice come daily to give me a report, but I also spent a lot of time with her myself noting her breathing, etc. She was in a memory care and the staff there were also keeping an eye on her, checking every half hour or so.

[Anonymous]

Anonymous wrote:

Anonymous wrote:
I think if there has been significant weight loss, falls, or excessive sleeping, inability/trouble swallowing , difficulty moving/waking it’s time for evaluation. My mom was referred by her memory care for evaluation in mid stage 6 after she kept losing weight; then before the evaluation happened she fell and broke her pelvis and passed a few weeks later. Before th fall I think hospice would have been a nice weekly visit but with the fall it was almost daily.


Hospice came daily??? I have never heard of that.

I'm so sorry about your mom.

thank you. Yes, after her fall, we began hospice. She was pretty stable the first few days, eating and talking a bit, so they were going to come 3 days/week. But by the end of the first week she started declining/becoming agitated, and they switched to daily visits and added ativan and morphine, when they thought she was actively dying. It was up and down --at one point she seemed to stabilize, but the hospice said that she could be stable for a while, or it could be temporary so they wanted to check every day....it lasted maybe 3-4 days, with times that she was sitting up and eating a bit and responding a bit, but then she started just sleeping more and eating/drinking less and less. She was also on a fair amount of both morphine and ativan. All told, it was about a month between her fall and her passing, but it was not entirely linear.

I was glad to have hospice come daily to give me a report, but I also spent a lot of time with her myself noting her breathing, etc. She was in a memory care and the staff there were also keeping an eye on her, checking every half hour or so.

I am so sorry you had to go through that. I'm sorry.

Thank you for sharing your experience here.

OP

[Anonymous]

Good hospice care often assists the patient - in the patient determining if they are ready or near ready to accept the end. I would bring-in hospice sooner rather than later. The patient needs the emotional support, and this is their training.

[Anonymous]

I didn't read everything, but as others have said, hospice is no longer just end of life care - although my dad with dementia did pass away within 6 months of starting hospice care. My mom's one regret is that she didn't involve hospice sooner. What sent her over the edge was the endless doctor's appointments. Once hospice is involved, the nurse comes to you, discusses care plan, orders medications, etc.

It is not too soon to reach out to hospice. My thoughts are with you.

[Anonymous]

Anonymous wrote:I didn't read everything, but as others have said, hospice is no longer just end of life care - although my dad with dementia did pass away within 6 months of starting hospice care. My mom's one regret is that she didn't involve hospice sooner. What sent her over the edge was the endless doctor's appointments. Once hospice is involved, the nurse comes to you, discusses care plan, orders medications, etc.

It is not too soon to reach out to hospice. My thoughts are with you.

Yes but no specialists.

[Anonymous]

Anonymous wrote: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?

It's really a personal choice and I would speak with the social worker. My late mother who had early onset dementia was on hospice for 3 years before she passed which means she received their services and my sister and I got the extra support. Closer to the end they provided morphine and other measures to ensure her comfort/reduced distress.

[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.

LTC facilities are not hospice care.