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By Freespirit On 2014.06.04 10:44
I'm wondering how many caregivers are currently utilizing Hospice for their loved ones with PD?

My dear husband has progressed to the point of great difficulty with swallowing. He has excessive drooling and phglem. He often vomits after attempting to eat soft foods. When he takes a drink of liquid (even thickened) it often ends up coming out of his nose. We are relying more and more on Ensure or Boost for his nutrition.

The PD specialist's answer is a PEG tube, of course; however, my husband had one some time ago, and is adamant that he does not wish to do that again. When I asked the PD specialist how do I help my husband with his swallowing issues, we were referred to Hospice for an evaluation.

I have mixed emotions about this. I'm not sure I'm ready for Hospice because at this point, it feels like "giving up" to me even though I am fully aware of the point of Hospice. It seems like there are some ideas or techniques I could be utilizing that the medical community could give me to continue to try to help my husband with his swallowing issues that don't require a hundred different tests, or fifty different appointments with fifty different doctors. Voice therapy will not help him at this point - and he has already had it.

Just curious if any of you are currently utilizing Hospice, and how did you come to that decision?

How did you know that it was time?

By JulieB On 2014.06.04 11:51
Dearest Freespirit, Our doctor thought we needed a hospice evaluation too, and I was very resistant since I don't think Michael is at that point. But our doctor was persistent and told me I'd be pleasantly surprised by the hospice folks, so I said okay. He was right. And I was too in a way -- Michael was not deemed ready. But I learned soooo much about what hospice is (and it's much more than I thought), and if you can have an evaluation I would encourage you to do that. It doesn't mean you have to commit. I was told that many people begin hospice and then "graduate" and come out of it, and that's okay. The care is amazing, the wisdom beyond what we could expect. So while we aren't enrolled right now, I will never hesitate to do so when that time comes, and I know it will not mean giving up, it will mean now the best most loving care he's ever had will begin. Hugs for you today... xoxo

By parkinit On 2014.06.04 23:35
FreeSpirit -

As you are probably aware, we are under hospice care. They have patches and meds for the drooling that are never mentioned outside of hospice, it seems. They are called scopolamine patches. They last 3 days. THEY ARE WONDERFUL! My spouse will eat perfectly well and then appear to simply "shut down." He can't swallow, he can't eat. It is not something he does willfully; he just can't remember how to swallow. We are down to about one meal a day and he has lost weight dramatically.

They come in and bathe him 3 times a week (it takes two girls who are very caring and gentle with him). A nurse comes by every other day to flush out his catheter and take med orders. I never have to go to pick up meds as they are delivered to my front door now.

I'm glad we made this choice as it is making the journey a bit easier for both of us.

We get visits from a chaplain and a social worker in addition to the home health aids 3x a week and the nurse visits. I can text my nurse with questions any time of night or day. Having this extra support and input in decision making regarding his meds, health, and well-being when I am home alone trying to make the right decisions for him has been a blessing.

By Freespirit On 2014.06.05 08:02
Thanks, Park.
I sent you an email.

By Rempt2 On 2014.06.05 08:19
My husband entered hospice at a time when his body couldn't survive long without extraordinary medical equipment. They recommend at this point no fluids or nutrition as it interferes with the pain medication. I think most people who enter hospice are not at this state but just need extra medical attention so it is helpful to caregiver and patient.

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