Expert: Paula Damgaard - 8/29/2006

Question
Hello Paula,
I just wanted to thank you for your answer and to offer my
condolences on the death of your father-in-law ... :-(
I shared your reply w/my siblings; we all decided just tonight
that it was time to bring in hospice for my mother. My brother
will be seeing them tomorrow. It's very hard, but we feel it's the
right thing to do (as much as there can be any "right" to these
situations.. :-(  ...). I wish I could go back and see her one more
time, but I don't think I'll be able to (recovering from a broken
ankle, many other family/work obligations, etc. etc. ...), so I'll
have to try and say my good-byes from afar. Somehow.
I want to thank you and Mary (?) for the website as well. It's been
a bit of a comfort to look back over all the Q&As and realize that
there are many many people struggling with some of the same
issues, all a little different, but still with similarities.
Thank you.
-- ann
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Followup To

Question -
We have a complicated situation. My mother has Alzheimer's and
has been living in an assisted living situation for about a year,
and doing fairly well (as well as one can expect). Two months
ago, she had a severe stroke that affected the entire left side of
her body. She is now in skilled nursing care. Sometimes she's
"here" and knows who we are, sometimes she's off in the past,
or in some mix of the two.
The big issue we're struggling with: After the stroke, she has
been eating/drinking less and less. She pushes away the
(pureed) food, saying she is full. She takes miniscule sips of
water. We (and the staff) have done what we can to encourage
her, pointing out that she need to eat and drink to keep her
strength up. A week ago, she went into the hospital, severely
dehydrated. They have got her stable again, and released her
back to the skilled nursing facility. Everyone is warning us that
this cycle--dehydration, hospitalization, release--is only going
to continue. Now, she has always been clear--when she was
herself--that she wanted to "live at all costs" (being, as she said,
in love with life), even to the extent that if the drs say there's no
hope, she would want to wait three months. Truthfully, I don't
know that she thought through all the details of feeding tubes,
heroic measures, etc.
The four of us (her children) are now struggling with the issues
of: do we try to keep to her previous wishes, or ...? We have,
after much discussion, decided to have a DNR order should her
heart stop or she stop breathing. But more likely, it seems she
will refuse food and all but a bit of liquid (too full, the food/
water is too spicy, etc.) and this is the situation we will need to
face. I don't think this situation was ever one she contemplated,
but who is to know, now. My brother talked to her about a
feeding tube (telling her how it would be used and when, and
asking if she would want that). First, she said, "what is your
dad's opinion?" (Dad, a retired dr, died a few months ago.) My
brother answered truthfully that, dad was against them for
himself. She said, "I guess I'll have to go with that then." When
asked again about feeding tubes, later, she said "I can't see why
I would want that. I eat everything in sight! And it would
certainly take the joy out of a steak!"
So, I don't know if you can help us, but if you have some
thoughts, we'd very much appreciate hearing from you. We are
torn between doing what mom said she wanted (once upon a
time), and looking at what that really means. Plus, of course, if
we don't follow those directives of long ago, we are looking at
letting her simply decline and probably die, through dehydration
and refusal to eat.
Thank you for any thoughts/guidance you can give us, any
thoughts on how we might approach exploring this situation. We
want to do what's best for mom... and it's very hard to see
clearly through all this. (One of my brothers has medical power
of attorney and all the rest. And we're trying to work this
through as best we can, together.)

Answer -
Ann, first let me apologize for not responding sooner.  I was
away for a few days last week and returned home to having my
father in law having emergency surgery and then dying on
Sunday morning so as you can imagine, I haven't really been
thinking about emails!

I hope I can help you:  First of all when people say things like "I
want to live at all costs" they have no idea what that means,
when they develop a situation like this.  I think that she is telling
you loud and clear that she doesn't want to Live at all costs by
pushing her food/water away.  Having a feeding tube placed is
major surgery, I doubt that she could make it through that
anyway.  then you have made her life harder again.  If she does
live through that you are putting her at risk for major infections,
feeding tube patients a majority of the time end up pulling them
out and then have to go through that again.  

Ask yourselves if putting in this tube or forcing her to eat is
going to give her quality of life?  Isn't that what she meant when
she said she wanted to live life at all costs?  She most certainly is
NOT living life at all costs, she is existing.  You are only going to
give her quanity of life.  I personally do not think that is what
she meant.  

I hope this helps.  I am sorry you are having to go through this.  
Please feel free to write again.  If you need to talk more about it
and want to talk, call my office,  434-243-5420.  My thoughts
are with you, Paula

Answer
Ann, I am sorry about your mom,  I know this is hard.  But I believe that you all are making the best decision.  If you think about your mom, I am sure that you would agree that she would never have wanted to live this way.

Hospice is a great organization.  They will make sure that she is painfree and gets the best quality of life that she has left.  

I will be keeping you in my thoughts, if there is anything else I can do please don't hesitate to ask.  Paula