Crossroads again

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Crossroads again

Postby HelloStarr » Fri Oct 14, 2016 10:44 am

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Last edited by HelloStarr on Mon Mar 20, 2017 9:43 pm, edited 1 time in total.
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Re: Crossroads again

Postby HelpingDad » Fri Oct 14, 2016 11:32 am

I guess my first questions are, is your mom on any type of life support and has she ever made known her wishes concerning life support? In my own case since Dad has no spouse and I am only child we set up power of attorney and healthcare while he is of sound mind. According to the lawyer who set them up it is best to do before any type of dementia or unresponsive condition sets in as a judge may have to get involved to grant those powers then.

Dad has told myself and his doctor there is to be no manner of life support and has a DNR in place.

Good luck
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Re: Crossroads again

Postby jmarsano » Tue Nov 01, 2016 12:03 pm

I Read a book by Atul Gawande, "On Being Mortal". It addressed your very concern about prolonging life. Mark and I had discussed this after his diagnosis of PSP. I don't know if it will help you.
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Re: Crossroads again

Postby Robin » Thu Nov 03, 2016 10:27 am

Somewhat related.... I attended the CurePSP International Research Symposium last Friday in NJ. One of the speakers (from a pharmaceutical company) had a list of philosophical questions to consider about therapies that slow the progression of the disease but don't eliminate the pathology. One question was about whether patients would want to take a medication that would "only" slow the disease. And another question was about whether families would want their loved one to take that medication. Bottom line - it's better to have the option than not.
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Re: Crossroads again

Postby HelloStarr » Sun Feb 12, 2017 10:04 pm

Wanted to post an update:

Even patients with PSP surprise people sometimes. Everyone at NYU had given up on my Mom. She surprised us all. I chose to bring her home after visiting a handful of rehab facilities. She was able to recover somewhat from her long hospital stay and we have been able to spend quality time with her. She seems happy.

She is in hospice, which has been incredible.

In a weird way, we are in a better place. Her hopsitalization left her unable to get up on her own--I cannot tell you how difficult it was when she would constantly get up and fall. It made for really difficult caregiving. Things are more manageable.
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