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Hospice Care during Covid

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    Posted: Jul 29 2020 at 10:08am
Dear TNBC Foundation Family,

A few months ago I received a heart-breaking call from a gentleman's wife. Some background-I had been helping him for about six months. When I first met him he had very advanced Stage IV Cancer of the Pancreas and unfortunately he did not respond to treatment. His wife told me that her husband needed Hospice and the family decided not to put him in an in-patient hospice but rather chose to have him cared for via Home Hospice. 

The reason was that if he was in in-patient hospice the Hospice facility would not allow visitors and the family (five children scattered around the world) wanted to be with him and they did come and spent some beautiful final days with him. He and they all tested negative for Covid. And they also had the advantage of having a close family friend who was a Hospice nurse who took care of the gentleman.

I am mentioning this because some of you may be willing and able to have a loved one die at home if you have the economic means to get good care at home. Seeing a loved one die is a painful process but seeing a loved one die via your cell phone or tablet is a very poor substitute, in my view, for being with the person and holding his/her hand, especially for the person who is gravely ill. 

Several times in the last 16 years of being a Patient Advocate I have been amazed at how someone I had helped responded to my voice or touch when the family told me "she/he won't know that it is you." And I always ask "is it ok if I try?" And the answer has always been "yes." And many times there is no response but for the few times that there has been...they have been very, very special. In two cases, magical. In one of those cases when the woman squeezed my hand to acknowledge that she heard me, her daughter grabbed her other hand and her Mom squeezed hers too. We both will remember those squeezes the rest of our days. Gentle and loving. 

with my love to all here,

Steve 




I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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