She is 91 years old and has Parkinson's disease. She is in a Nursing Home, is bed bound and wheel chair bound. She is not in pain, but experiences discomfort from not being able to move on her own. She is slowly losing her appetite. So, I'm hoping those of you who have had experience with palliative care can help me. Will palliative care be able to make her more comfortable or is their main focus to prescribe pain killers?
One of the benefits of PC is that care comes to you and you don't have to take the person to medical appointments. But that also means the person is housebound and cannot leave the house except for religious practices. I took my husband on a fall leaf expedition. If anyone objected I was prepared to say we were druids and worshiped trees! Another family member on PC missed a family party, even though she was up to it with help. Since your mom is in a nursing home anyway, these issues probably don't apply and this would not be a new benefit.
Another benefit is they handle the administrative part of benefits. We tried for three weeks on PC to get a hospital bed for my husband. One little thing after another got in the way. (Dr signed on wrong line, insurance papers were lost on someone's desk, etc) I signed him into hospice at 3:00 pm and a hospital bed was delivered by 7:30 pm. the same day. Hospice is absolutely brilliant at eliminating red tape. I didn't think that was particularly true of palliative care. Would this make any difference for your mom?
In your place I would ask for a complete explanation of how being on Palliative Care would change things for your mother. Ask for specific examples. They are going to make her more comfortable. How? Get a couple of examples. When my mother was on hospice in the NH, the program had volunteer visitors. One young woman gave mom a manicure. Another went to activities with her. I think this kind of attention is one of the reasons Mom did so well that she was dismissed from the hospice program after 3 months. Does the palliative care program do anything like that? Get them to tell you EXACTLY what they do.
2. Given that her mobility is limited, and that she has PD, I assume she's not getting any therapy, so there's really no activity to help her improve, such as bed exercises?
3. If she's at a stage where decline is inevitable, then I would consider PC.
4. I don't know if it could make her more comfortable physically; I think that's a medical issue. But I think it might make you more comfortable emotionally b/c the focus shifts to declining health rather than improvement. I.e., the concern about someone getting better is replaced by addressing what can be done at this point, given the circumstances.
When it became apparent that my father was declining and would never be able to regain strength, given his impediments, I asked about PC b/c I wanted him to be as relaxed and comfortable as possible.
4. PC's main focus isn't to prescribe pain killers. But if she's in pain, or discomfort, they can be prescribed if the attending facility doctor is in concurrence.
5. A very important factor though is that PC is private pay. I paid $342/daily. Meds were not covered by Medicare, so they were out of pocket as well.
I was able to keep my father in the rehab facility because the one I chose had a range of care options, from rehab to IL to AL to memory care. He stayed in the same room, had the same nurses and aides.
6. W/o seeming callous, I think the first issue to address is your mother's stage. But equally important is whether or not you could afford a several thousand dollar out of pocket cost on a monthly basis for the remainder of her life.
Last, I've found there's some misinformation on the part of medical people about what really constitutes PC and what really is covered by Medicare. After researching and calling, I found source to be the best: National Hospice and Palliative Care, 800.658.8898. Although PC may in the future be a more comprehensive benefit, it isn't now.
It is true that hospice groups differ, but in my part of the country (upper S.C.) there are many wonderful groups with great care and love for their patients. While hospice is typically considered to be "end of life," I have found that if there are specific diagnoses and a patient is in decline, they are likely to take on that patient. They do come to Assisted Living facilities, homes, nursing care facilities, and provide their own facilities, too. Getting them earlier than later is very important for the patient, the support of the family, and even the caregivers in a nursing home. My dad was on hospice for several years and he was living in a nursing home. The friendship he made with the hospice staff was huge! The male caregivers that came several times a week to help him bathe were men that my dad looked forward to seeing on a regular basis. They laughed with him, listened to his repeated stories, and asked about his family. They were genuinely interested in my dad—and they grieved with us when God took Dad home to glory. If I had to do it all over again, I would ask for these precious folks to be a part of our lives. I still communicate with my parents' hospice nurse—she was there for both of my parents at the end, and she was very supportive of our entire family.
On a side note I recently signed my mom up for Ada ride to get a wheelchair accessible van to drive her places as needed. This is a wonderful service for $3.50 per ride. Wish I had known about this sooner. I wish you the best as I know this is a tough journey to go on.
So in my opinion..you don't need additional Palliative Care as you'll just pay more for it. Her PCP (regular MD) will be in charge of your mom's medications and the only way they can change it is with an order from him.
The bottom line is that they may ask you to look into Hospice eventually.
Please..please..PLEASE..before you do..look into the Hospice that the nursing home your mom is staying in, as one Hospice isn't the same as another, as I found with my dad. The Hospice caring for him was atrocious and was never around until he passed away..and that's when they wanted to completely take over.
Blessings.
She's not groggy or over medicated at all. She was also given antibiotics for a UTI. (Although, the benefits of continuing to treat infections with antibiotics in terminally ill patients is controversial. I've read extensively about it and what I found was surprising. I'd read about it and discuss it with your doctor.)
And the most important thing is that there are no regular or intrusive testing, scans, attempts to fix things that can't be fixed.
Her doctor didn't think she was quite ready for Hospice, but, I expect that she may be pretty soon now. Until then, I think the Palliative care is working well. I still haven't figured a way that we can avoid taking her to the ER for suspected UTI. It really scares her.
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