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Hospice Care

RB
Posts: 4
Joined: Mar 2009

Hi all,

I am new to this discussion board/group. Although I have been on this site before I never registered until now. My father was diagnosed with NSCLC in 2004 and till now has been on every chemo/radiation and surgerical treatment imaginable. Most recently, he underwent two thoracentesis procedures to address his pleural effusions which affected his one remaining lung and his breathing substantially. He is currently on oxygen at home. His oncologist reported that there were no other real treatments to consider and that hospice care was our best route.

This has been so very hard to go through. My sister, mother, and myself are the only caregivers for him and though we are privileged to take care of him, it is so hard to see him in this state. He is able to walk a little, and move in bed but mostly is bed bound--up until a couple of months, he had been active, working during his treatments, and being independent. He is not the same Dad I remember from growing up and thinking about that makes my heart ache.

I am 26 and am starting my life, I am not married yet but hope he can see the day that I am. I have accepted that he may not see that day and may not get to see his grandchildren but it is still hard to imagine my world without him.

If anyone has had experience with hospice care or can offer any words of support for my family and I, I would greatly appreciate it.

Prayers to all,
RB

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

There are two ways to consider hospice. The first is to relocate your dad to a place that specializes in such care, of course.

The second, and the one I am familiar with on a personal basis, is to have hospice come to you: home hospice. In this way, your dad is surrounded by the familiar and by family, while professionals come in daily to provide the vital care he needs that you cannot provide yourselves.

Choosing this second option requires a greater commitment on the part of the family, of course, as many duties will be still be the duty of people who live with him. In my family's case, my dad and mom chose for her to be cared for at home. A gurney was brought in and she slept in the den. My dad did much of the daily stuff required, and even learned from the hospice folks to do some of the things he probably didn't want to do.

That is the difficult part of that choice, and probably why many choose the first choice instead. I will not debate the merits of either, except to point out that in addition to the comfort of familiar surroundings and familiar people, the home hospice is often more convenient AND familiar for visiting family and friends: we all become a bit edgy in instiutional settings, and some of us even dread them. It is so much easier to walk into a home you grew up in, or in which your friends grew up, to see a loved one.

This is a tough time for sure. I would advise spending as much time as you can with dad.

Take care,

Joe

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