Palliative Care

Cat K · May 2025

The geriatrician my DH sees has ordered palliative care and we've seen first a registered nurse and then a nurse practitioner. I wondered if anyone has experience with pallilative care and if it's helped. What are the benefits of palliative care. I was told they would be able to transition him to hospice if/when the time came.

Ragfoot · May 2025

My wife was referred to an Outpatient Palliative Care Clinic. The appointment consisted of Myself, DW, a medical doctor, a registered nurse and a licensed care social worker. It was primarily a question/answer period which lasted more than an hour. I was provided with some available resources they thought might help. I mentioned I had tried to get my wife enrolled in an Adult Care Health Center, but found she was ineligible due to dual incontinence. They also told me to "call if you think you need Hospice".
I hadn't been back home for more than a couple of hours when I received a call from the Palliative Care Social Worker stating she found an ADHC which would accept my wife, even with incontinence. That was probably the best message I had received in many years.
FYI, my DW attended about 5 hours a day, twice a week, for more than 6 months. It was WONDERFUL respite. Unfortunately, now that she can no longer stand independently, she can no longer stay at that ADHC, since they are not set up to transfer her (they say they must move the person every two hours at least from chair to chair AND they are not set up to change underwear while sitting in a chair.)
FWIW, there ARE other ADHC facilities which ARE set up for those accommodations.

TL;DR Palliative Care turned out to be a very good experience for me and my DW.

Sandi Roe · May 2025

I’m a true believer in Palliative Care. Why wouldn’t we take any help we can get🤷‍♀️Just having someone check on us , caregiver and patient alike made a difference for me. Yes, they help with transition to Hospice when it’s the right time. I’m thumbs up !

Cat K · May 2025

The palliative care nurse came to the house today to check on us. DH dozed much of the time. I was on the fence about palliative care at first but I can see the benefit of having it, having a medical professional keep track of his decline and be available if I need them. He sees the geriatrician soon and I want to ask about what stage he's in. I'm thankful for the support offered here.

Miles2Go · May 2025

https://alzconnected.org/discussion/73020/palliative-care

My husband was placed on Palliative care on March 4 at my request to PCP. It has been a wonderful experience!

The care manager (a nurse practitioner) comes monthly. She advised me of various programs we were eligible to receive. We have monthly visits from her, social worker and a chaplain. They are great for me also. She offered physical therapist which I declined because DH would not tolerate exercise. She offered a hospital bed which I also declined as he is not there yet but good to know that is an option.
I was also advised that we could have a PCP who would come to the house. Wow, a doctor who makes house calls - I remember that when I was a child. I immediately accepted this so I don’t have to bring DH to doctor office. The PCP and Care manager communicate with each other and coordinate his care.
Other specialists make house calls too, such as, podiatrist. And there is a manicurist who will visit me for a mani/pedi (at my expense).
Everything that has been provided has been covered by Medicare and our secondary insurance.
As said in one of the earlier responses, they will transition to Hospice when the time arrives.
Our group is easy to reach and monitor his medication regularly. They have been extremely responsive. They all appear to understand his diagnosis and are as concerned about my wellbeing also.
I highly recommend based upon the experience I have received.

Bunny whisperer · May 2025

https://alzconnected.org/discussion/73020/palliative-care

So glad you asked this question because I was wondering as well if its worth it, and very happy for the responses because it made me feel better about it...hope it did the same for you as well.

Mommadukes2 · April 16

how does one even begin this process? It's time

jgreen · April 16

https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care.

Hi @Mommadukes2 Here is a link that will give you information about both palliative and hospice care and how to request their services.

Maru · April 16

According to the Pallative Care sites, the care seems too good to be true. I was curious about at what stage could a dementia patient be brought into Pallative care, the site said when diagnosis has been made. So my question is what has been the experience of the caretakers here? Sooner vs later???

terei · April 16

It is my understanding that Medicare will NOT cover Palliative care but does cover Hospice, which could be why it is not used as much as hospice

bjtm1969 · April 16

We have had a wonderful experience with Palliative Care. My husband has both a blood cancer , multiple myeloma, and is probably in stage 4 in his alzheimer's progression. Our Palliative Care physician is covered by Medicare and we see her in her office at this point. We don't need the help of other members of her team, yet. She helped me navigate the issue of driving working with both our PCP and neurology. She also is very knowledgeable as far as medications for all serious illnesses and often seeks alternative treatments, if possible. She has helped bridge the divide between neurology and oncology who look at their specialties through their own lense and not always at the total patient. She is kind, patient, and takes her time with us explaining things in a way my husband can understand. He may not remember what she said but when I remind him he seems to recall and respects her thoughts. I would say go for it!! Best of luck.

Palliative Care

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