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By Maddie52 On 2016.07.11 15:37
Hi Everyone,
I know that many on the forum may have to face the hospice decision at some point. I guess my time is now. My husband (22 yrs. with Parkinson's) has declined very much since his hip fracture in December. He walks only a small amount, his cognition has diminished greatly and now he is starting to refuse his medications. I visited with his wonderful MDS/neurologist last week and although she said she could not predict his future she said that she would not be surprised if he passed within 6 months nor would she be surprised if he was still with us in 2 years. She is supportive of hospice and talked about how people wait to long to consider hospice resulting in the patient and family loosing out on services that would greatly help both. I struggle with wondering if my hesitation has more to do with me or more to do with him. His sister and I met with a fabulous hospice representative over the weekend and he finally gave me some clarity by saying "what would really change if you engaged hospice" The answer I guess is nothing negative but many positives. I asked that the word hospice not be used around him and they will make every effort not to say it. I have POA etc. so I would be signing all the papers. I haven't made a final decision but I am leaning toward going with hospice. I also learned that the evaluation is made by his MDS not an outside doctor. She has agreed that she will follow him in hospice as I don't feel that our PCP is the one to do that. I am going to reflect and pray about my decision until tomorrow and then decide one way or another. If anyone has thoughts I would appreciate hearing them.
Bless you all.
Maddie

By lurkingforacure On 2016.07.11 18:59
I am not in your shoes but admire your approach to this very difficult situation and decision. Thank you for sharing.

By jcoff012 On 2016.07.11 21:03
You are facing a hard decision, but you sound as if you are coming to peace with it. Bless you for being so loving. Your decision will be the best for both of you. Find peace.

By Mary556 On 2016.07.11 23:23
You are in my prayers tonight, Maddie. You love your husband so much.
God bless you and your dear one.

By VioletV On 2016.07.12 20:44
Maddie,
Maybe this story will contribute to your thinking. An acquaintance of our has been telling us about her mother, who is not a PWP but who has been in late stage cancer. The mom refused all palliative care and hospice, so that all her family experienced was her suffering, her pain, her serious incontinence, her struggle, her disorientation. And of course she herself had to deal with all of this for all this time, many months of it. Just last week she was taken to the hospital, gravely ill. Her doctor told the family she would not come home, she still was refusing hospice, and suffering mightily. Finally they made the hospice decision at the very last moment. She went to the hospice at noon on Wednesday and died Thursday morning.

It is my sense that the family, and most importantly the woman herself, missed the chance to have weeks, if not months, of pain relief, connection with each other, and skillful care. Hospice is a blessing. Not a death sentence.


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