Expert: Paula Damgaard - 8/19/2008

Question
QUESTION: Paula - (Part 2)
I just posted a question to you yesterday and realized I had been misinformed.  My father's lungs are not collapsing..rather he has accumulated fluid in the bottom as a result of being sedentary, which is unlikely to get any better, so now the fear of course would be pneumonia. I think we are leaning towards nursing home care, but I welcome your thoughts!

ANSWER: Susan, phew that makes me feel better!  

I would tell you that your fear of pneumonia is misguided.  I think that people forget that pneumonia used to be "the old people's friend".  It allowed them to die a peaceful death.   Now we treat everything so heavily that we are keeping people alive longer for what?  People with Alzheimer's do not have any chance of a better quality of life, so all we are doing is giving them quantity.  Is that really what you want for your dad?  To become infanitle lying in a bed in a nursing home?  I don't think so.  This is extremely hard, but think back 10 years if you can, would your dad have ever wanted to become what he is today?  I bet the answer is NO!  

Please call Hospice today.  They can help you ease this burden.  I am sorry you are going through this.  I know it is hard.  It was the hardest decision I have ever had to make in my life, for my mom, would I do it again?  YES!  No doubt.  She would never have wanted to go to the end of this awful disease.  

Please let me know how it goes.  Paula

---------- FOLLOW-UP ----------

QUESTION: Thanks Paula, for your insightful and prompt response.  My understanding is that Hospice cares for folks for up to six months. My father does not have pneumonia at this time, but I wonder if it is inevitable that he will, and if that should influence the direction we take?  I know what you are saying about whether "he" would want to live like this for a long period of time, but I guess I'm wondering whether my mom could live with herself if she didn't give him the best chance at living longer...I'm not sure she's "there" yet.  He could live beyond six months in a nursing home, but would that be the best way to go?  I guess our family needs to sit down at this point, and discuss things with mom.  Thanks for your advice.

Answer
Your understanding of Hospice is wrong I believe.  Here in Virginia, someone who is diagnosed with a neurodegenerative disease; ie: Alzheimer's would be put into their Transition Program, where they follow them regardless of how long they are "supposed" to live.  So I would give them a call.  

You are right your family does need to sit down and really look at what is happening and pose those hard questions to each other.  Maybe that would help your mom to "get there".  Because truly, she is not keeping him alive for him - it is purely for her, and in the end, the truth hurts, but it is a selfish act.  Hopefully you can all get your mom to realize this and let your dad go peacefully.  

Emphasize comfort, caring and quality to her.  It may take a bit but I am sure she will come around, she would not want your dad to suffer.  

Whether or not you put him in a nursing home is up to you.  I am thinking you are asking me for my permission.  If that is what you need to do it then by all means permission granted.  This is not an easy decision, but one totally necessary.  Your poor mom is becoming worn out.  She is going to have a medical condition herself if some of the pressure is not taken away.  Perhaps even the move to a nursing home will make it easier for her to let him go.  Might be worth it in the long run.  

Good luck.  My thoughts are with you!  Paula