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.
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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.
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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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.
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.
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.
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.