What's your experience introducing the idea of Hospice care?
I am POA for my brother who is in a personal care facility. He has Parkinson's and increasingly needs more care and help. Because of the Parkinson's he falls a lot, goes to the hospital, is sent to a care facility for rehab, returns to his personal care facility, falls and the cycle continues. He has most recently returned to the personal care facility.
He has been to the hospital 5 times and 4 different rehabs since March. He has had fractured ribs, vertabrae, and more recently a hip fracture. They were able to do a repair rather than a hip replacement. Still, it was surgery. He has lost 45-50 pounds in 5 or 6 months.
His visiting nurse believes we should have him evaluated to see if he is eligible for hospice care. She thinks we are already past a stage for Palliative care. We have scheduled an evaluation for hospice.
I live out of state and do this along with another relative who is local. We work as a team.
Which questions should we ask?
How have you broached this topic with your loved one? How did you approach it? We have legal documents and a DNR in place.
Thanks for any insights or suggestions.
My husband has been diagnosed about 7 years ago as well, has it probably for 10 years. However, he has no dementia, it is common to say dementia and Pd happen together, yet, as some studies showed 40% develop dementia in late stages in general.
Recently my husband was hospitalized as he could not move at all.
But, it was quickly eliminated as being due to PD.
All tests done, heart, brain, stroke, dementia, infections and others eliminated.
He was prescribed some meds for back pain (lots of it by GP that week)and possibly there was some interaction.
Elimination of this showed improvement, then levodopa was not administered as per schedule, correcting that showed improvement again, then more tests showed possibility of passing kidney stone while in ER. He was lucky to be in the same hospital where his neurologist works and consulting her, they took it seriously as prior to hospitalization he had his reg quarterly appointment which showed all was well.
He also had hip fracture, surgery, he was able to walk month after. Now, after 3 years walks mostly with walker. Intense therapy will start next week.
Could be anything with your brother, facilities tend to keep people in wheelchairs for safety, their motor skills tend to diminish quickly. And meds are not on time often, too much or too little levodopa makes a big difference
It has been said Parkinson’s is old man disease, not anymore, so most people live even 20 years with it, they don’t die of it, they die with this disease of other causes.
I would look for other causes of your brother’s deterioration, which could be curable.
If you choose to go this route at such a distance, then just notify the sibs of this action so that they can choose to visit him. Once on Hospice, I recommend you plan one last visit. Afterwards, you may want to check with staff or the local sib for video chats
Our LO has been thoroughly examined. He held his own with Parkinson's for about 6 years and had a sudden and rapid decline. He has had the same neurologist throughout. In February she alerted us that due to an increase in halucinations he should no longer drive. He'd been living independently and alone in his own home.
Taking the car away was a dramatic loss of independence and started a downward spiral. By March we had him being placed in Assisted Living that ultimately was upgraded for more personal care. Since March he has been in the hospital at least 7 times and sent to 5 different skilled nursing facilities for physical rehab. Because of the PD he continues to fall. He has had a significant weight loss and rapid increase in weakness because he is limited to a wheelchair and no longer able to use his walker.
Although mentally clear most of the time, except when having hallucinations, his body is failing him. Sometimes he has difficulty swallowing because of the PD. That is the reason for a referral to Hospice. I'm fine with the concept of Hospice, but don't know if the timing is right. It's a quandary.
Is there an advance directive?
Has an MD suggested that your brother has no more than 6 months to live?
Does your brother wish to stop treatement and move to comfort care now with an acceptance that this is end of life care?
It is the MD who orders hospice and that only after discussing with family and/or POA whether the person wishes to stop being treated, accepts that Hospice is end of life care with comfort measure but no treatment toward cure.
So we go from MD recommendation that end of life is imminent in his or her professional opinion to discussion with THE PATIENT (or POA/Guardian/conservator if patient is no long competent under that law) to Hospice referral for comfort care to acceptance by Hospice.
That's the chain. Not certain where you fit into that chain, no what the express wishes of your brother are here, but that can be worked out in this process.
I wish all the very best of luck, and comfort and support.
He has been in the hospital 5 times and 4 different skilled nursing facilities over a 3.5 month period. Sometimes he is clear, sometimes he is not. He does have hallucinations related to the Parkinson's.
Even on Hospice care his PD medicine would continue as it helps with some of the symptoms but would not prolong his life.
The Visiting Nurse, who also does Palliative care for some of her patients, was the one who suggested that it was time to consider Hospice.
I agreed to have an evaluation so we would know our options. I would discuss this with my brother if the MD who does the evaluation agrees or orders it. I don't see the point of discussing it with my brother if it's not an option.
It seems to my novice eyes that he meets the requirements because of the PD, that he is pretty much limited to a wheel chair, needs more and more assistance, sometimes has slurred speech, has lost about 50 pounds in 5 or 6 months.
I have my own hesitation, but can see this is where we are headed. I don't know how to bring this topic up to him. He is my only sibling and I live in a different state. We have done the legal documents including advanced directives. I handle his finances.
This is new territory for me. I managed my parents care (also long distance), but that was 15 or 20 years ago. Somehow it's much different for a sibling.
So, I want to 1) Know the best way to discuss this with my brother and 2) know the questions I need to ask if I am presented with this care option. It's my understanding that he could be on Hospice care in his current personal care facility.
I felt doing hospice was giving up and I was not going to give up on my dad.
But eventually learned the palliative care nurse knew her craft, and when we eventually put him on hospice it not only made things easier, it provided many financial benefits (such as being able to be in SNF for free as he was a veteran)
The nurse knew he was dying, yet I, with no expertise at all thought we could get him cured from ALZ.
I would trust your nurse in this case to at least have him evaluated. If the MD disagrees he/she will say that. In my case I told the MD I thought she had to believe there was high probability he would die in six months. She sort of in a cold way said I can certainly assure that, but she was right, he passed in two months.
I'm anticipating a conversation with the MD after my brother is evaluated and I want to get my questions ready. Any suggestions would be appreciated. Thank you.
We told my mother these services were through her Medicare advantage plan. We did not say it was hospice. I really did not want to have a discussion about this being a hospice services because with her because i doubt it’s happening anytime soon (she has a brand new pacemaker). The nurse that comes once a week does not mention the word. So we don’t either.
My mother is sharp as a tack, she may have figured it out anyway. Who knows.
I'm just debating how to approach this topic with him. Dementia goes along with Parkinson's, but for now he is fairly clear, except when he's hallucinating.
It seems like you have chosen not to use the word Hospice with your Mom. That's not a judgment, just an observation. I appreciate your sharing that because I'm trying to find the right way and how much to say to my brother. Thanks so much.