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SetSail Asked September 2022

Does anyone know what kind of services you can get with palliative care?

My mother is completely and totally disabled. She is confined to a wheelchair and, because of her condition (primary lateral sclerosis), she will never walk again. She will continue to lose use of her arms as well. She will not move to an AL facility. She is extremely resistant to palliative care because it is related to hospice. The entire situation is sucking the life out of me. I believe we need to explore all options available to us. I’m just wondering what kind of services are available with palliative care? Thank you in advance for your responses.

Grandma1954 Oct 2022
Has she talked to anyone from Palliative Care?
I think if she understands what Palliative care is and what it can do it might ease her mind.
Once she is comfortable with Palliative Care if she qualifies for Hospice the transition will be much easier.
You and she will get the help that you both need, deserve. Not just help physically but emotionally as well as all the supplies and equipment that you can both benefit from.

funkygrandma59 Oct 2022
When I first looked into hospice for my husband in July 2018, I was told at that time he didn't qualify but did for their palliative care, which would have been a nurse coming to the house just once a month and that's it. I of course declined that as I was needing a lot more help than that.
Ironically my husband almost died at the end of 2018 from aspiration pneumonia, and after that he remained under hospice care until his death in Sept. 2020, which meant he was under there care for 22 months.
And while they supplied all needed equipment, supplies and medications, along with a nurse coming once a week to start and aides coming twice a week to bathe him as he bedridden at that time,(all covered 100% under his Medicare)I was still responsible for 99% of his care.
Best wishes in getting things figured out for your mother.

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Grandmaofeight Oct 2022
I have dealt with both Palliative and Hospice Care. Mom was on Hospice for over two years and Dad and Mom were both on Palliative care. My Mom was removed from Hospice because they deemed her stable. Not better but not worse.

palliative care did the intake evaluation. Mom was put on Hospice,Dad was on Palliative. Palliative orders meds, can adjust meds, visits about once a month. If a medical issue they will come out.

hospice, 3X weekly bath, once a week visit by nurse, chaplain, social worker support, supplies paid for by Medicare.

hospice does not necessarily mean death is imminent, Hospice is support for very ill people. Hospice not only helped my Mom and Dad they helped me emotionally.

cwillie Sep 2022
Hi GA, what kind of helpful services did you get with palliative care? Hospice is covered by Medicare and provides a whole suite of services including nursing and personal care, equipment and respite care, but I have never seen anyone post about receiving anything like that through palliative care.

AlvaDeer Sep 2022
That I know of there are no special services involved as there are with Hospice. It is simply a mode of care model and some doctors are palliative care specialists,so you can discuss if there is any help available or not.
At some point it isn't up to Mom whether or not she enters care. It is up to you whether you can continue to deliver to her the care she expects from you. You will, most likely, to consult a social worker about any and all programs available to/for your Mom. Much will depend upon your supplemental insurance for her, and etc. I sure wish you good luck.

GardenArtist Sep 2022
My father was in palliative care at the end of his life; it was so close to hospice care that we decided not to reclassify his status, but he did get both palliative and then hospice care.

What you can do is contact various palliative care providers, after creating a very thorough checklist of what can, would and/or might be provided. That will help you make a decision.

I did that and found that some so-called palliative care companies were really providing hospice care, and vice versa. It was an "eye opener" as I thought services were standard across that type of care.

cwillie Sep 2022
I'm Canadian so all I know is what I've learned here on the forum. As far as I can tell American palliative care is more of a philosophy of care (an acknowledgement that a person is nearing the end of life and has chosen to stop any curative treatments) rather than an actual service with benefits like hospice care.

Unfortunately support for someone with PLS and other chronic debilitating diseases is pretty much limited to what they and their insurance will pay for. I totally understand your mother's resistance to assisted living but this disease does not necessarily limit lifespan and unless you are willing to sacrifice your life for hers I think it really is the best (only) option if she can afford it.

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