I'm trying to decide if palliative care will benefit my mom?

My husband was on palliative care before he went on hospice care. As far as I could see there was no benefit to palliative care but hospice was very worthwhile.

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.

1. Have you discussed with the nursing staff or DON whether or not the appetite loss is indicative of segueing into end of life stage?

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.

Thank all of you for your replies. I went to the nursing home today, but the Head Nurse was not available, so I will speak with her next time I go to see my Mom. But the little bit I have learned about PC, it seems it will not really benefit my Mother. In the future, when the time comes, I am planning to bring in hospice.

Druids worshipping trees.... love it!

The biggest piece is remembering that hospice and palliative care will not provide additional 24-7 eyes and assistance for Mom at no cost to you and paid by Medicare or Medicaid. It’s not feasible in addition to nursing home environment to provide a 1:1 aide all the time. But some additional help a couple times per week? Maybe some additional therapy for ease and comfort? At least check it out. Then you will know.

My mom had Parkinson's disease and lived for a while in Assisted Living (after she fractured her hip). Because of her diagnosis of Parkinson's we were able to get a very wonderful hospice to assist with her care. They gave her physical therapy, looked at her medications (and tweaked them), and sent a nurse to check on her progress. The PT was so helpful to her. She improved. She was "released" from hospice care. We were able to go through this process several times. In the end, we also had hospice care. It was a huge blessing to my family, especially to me as I was not only spending time making sure Mom was cared for, but also my elderly dad (who had prostate cancer), my home-schooling son, my other young people (in college), and my own husband.

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.

My 88 year old mom is living in a memory care facility with my dad and is in stage 5 of Parkinsons. She is wheel chair bound. In January when I took her to her doctors appointment I requested from her doctor that he put in an order for hospice. He did agree that she was ready for it. I asked at the facility where she lives to recommend the 3 best hospice companies that they work with. I then interviewed all 3 and came to my decision. She has been on hospice since late February and it has been a blessing. No more dragging her to appointments. This became very difficult to manage getting her in and out of the car. The hospice staff have all been wonderful and she looks forward to the visits from the nurses, shower aid twice a week, social worker and the volunteer. My role of managing her care is so much easier now as I have turned it over to hospice as they know my moms requests and they are available 24/7 when she is in pain or has anything going on. By hiring hospice that the facility works with they have a relationship with them so they call them up to come as needed (they came one morning at 3am when mom was in pain). I had my mother in law on palliative car and was not impressed at all with that.
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.

I've found that the nursing staff at the nursing facility my dad lived at provided awesome Palliative Care. They also kept him comfortable when he needed it.

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.

It is not what you think. They are a wealth of info on all the medical care available and have answers to about everything. They know what resources to go to and give excellent advice. The doctor orders it and when they get the order they will first call you and find out what are your needs. You can accept or reject whatever they say. I called them and we determined that at this time, I wouldn't need them but I can call them at a future date when my husband gets worse. Wish I could be more specific since I didn't need their services but information is free.

I just wanted to add my experience with Palliative care. That's what my cousin has. (She is late stage dementia and not mobile.) The difference, to me, was they tried to focus more on her comfort and peace and of mind, than anything else and remove all but meds that help with her comfort level. For example, she was taken off her cholesterol medication. Some other meds were removed too and now they are just focusing on keeping her content and pain free. She still takes meds swelling and diabetes.

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.