Find Senior Care (City or Zip)
Join Now Log In
S
Socrealtor Asked July 2023

Any experience deciding if and when hospice is appropriate for someone with Parkinson's?

We are feeling pushed to place our LO in Hospice care. He lives in a personal care facility. In recent months there have been multiple falls, trips to the hospital followed by rehab, return to Personal Care facility, falls again... Inside of a few months there have been multiple rib fractures, fractures to vertebrae, a broken hip that was repaired, not replaced.


He's lost a significant amount of weight and while he does have hallucinations, is fairly clear minded and logical. Assorted teams at the teaching hospital are pushing us to Hospice, but the PC facility PCP is in a wait and see mode. We are at a loss. We'd like him to have additional care and equipment, but we are not certain he is ready.

Socrealtor Jul 2023
His Visiting nurse suggested that his current level of care is no different than he would receive in palliative care. She suggested he be evaluated for Hospice.
You are correct about the hospital visits and distress with meds.
Somehow, though, he likes going to the hospital. Perhaps the change of scenery or added attention? He agrees that the battles over meds are distressing.
I am not hesitant about Hospice, but another family member has a strong dislike of Hospice. Our LO is included in this consideration, and we will yield to his wishes.
His PC facility has a policy that if they don't see a fall, and/or if the resident hits their head, that it is an automatic trip to the hospital and they only call the family AFTER the resident is sent to prevent arguments. Yes I am POA and they know that. However after previous falls resulted in fractures, I do understand the policy.
At least the most recent 2 trips did not result in fractures, so there was no stay. It's alarming and discouraging when I am long distance.

Ohwow323 Jul 2023
Hospice does not mean death watch. He would be assessed by medical personnel and then he would get supplies and medical care as needed. Also, you would have the ability to call them and ask them questions. I found that when I had it for my sister, I called her nurse and she was sooooo helpful and would return my call within a reasonable time.

ADVERTISEMENT


funkygrandma59 Jul 2023
If his doctor hasn't given him 6 months or less to live(which is what it takes to qualify for hospice)why is hospice even being brought up?
If your loved one is still pretty clear minded, ask him what he wants to do, but make sure he fully understands that NO extreme measures will be taken to save his live if he decides to go the hospice route.
Hospice does serve a great purpose when one is deemed end of life or close to, but in all honesty from what your describing it doesn't sound like your loved one is quite ready for it yet.
Wishing you all wisdom and discernment in this situation.
Socrealtor Jul 2023
You describe our predicament perfectly. We have presented our LO with the info and asked that he reflect on the info and let us know his thoughts. He has asked for a meeting with his PCP to discuss and I have arranged for that. Thanks for the support and understanding.
BarbBrooklyn Jul 2023
Welcome, SOC.

I see from your profile that the repeated hospitalizations cause your brother distress and that he then has to be given antipsychotics which only make him more agitated.

When I realized that each hospital stay set my mother back much more than it helped, and that they messed up her meds every time, that's when we said "no more hospitalizations".

We didn't do hospice, rather palliative care. We said no hospital trips; everything gets treated in house (she was in a SNF).

What is your hesitation about hospice?
Socrealtor Aug 2023
I'm not hesitant about Hospice. Where I live there is only 1 and it's well regarded. Where my LO lives there are many different Hospice groups. One, for example, is very much into heavy morphine. Another is very strict on the 6 month rule. Another promoted doing it for the improved equipment and more visits from staff.... It's like sitting through various living facilities and trying to find the best match.
A family member who is local to where my LO is located has had negative experiences with one of the local groups.
For the time being the PCP made a referral and now has withdrawn it until a later date.
It will give me more time to research.

ADVERTISEMENT

Ask a Question

Subscribe to
Our Newsletter