Parkinson’s is a horrible disease that takes a bit more away from my husband everyday. There will come a time when I need additional help beyond what our current medical team can offer. I need to know what supports are available to us as we struggle and understand what each of those mean. I have heard of palliative and hospice care and want to arm myself with information so I can make good choices when the need comes. What are the differences between the two, when should I be looking at them, how do I make sure it is the right decision?

We hear a lot about palliative care and how it can be helpful at any stage of my husband’s illness. I really don’t think I have a good idea of what that would look like. According to the website for the National Hospice and Palliative Care Organization “it is patient and family centered care that optimizes quality of life.” I mentioned it to our primary care doctor once and was told that we aren’t ready for it yet. It makes me wonder if anyone really understands what it is all about?

I had the opportunity to speak with a former hospice nurse the other day which was somewhat enlightening. She spoke about her past career and how wonderful it was for her to be able to help people face the end of their lives in comfort and peace. She mentioned the importance of getting them off all the toxic medications they had been taking to give their body a chance to rest. This was interesting to me as I realized that perhaps I had the wrong idea about hospice. I didn’t realize that one of the requirements of receiving this service is to accept hospice rather than curative care. I am not sure what that means.

Basically, I think that when the time comes for us (or me, as the case may be) to make these difficult decisions about care, it will mean asking hard questions. I will need to understand what their philosophy of care is and how they plan to implement it. If it’s palliative care, how do they define optimizing quality of life and how will it change what we are doing? If it’s hospice care, what does removing curative care mean to them? How much power do I give over to the nursing staff in each situation? Will they be making life altering decisions for my husband? Am I really ready to let go?

For more information check out- Palliative Care and Hospice: 5 Tips for Advocating for Yourself and Your Loved One | Parkinson’s Foundation.