LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

-------

Sunday, September 21, 2008

different approaches

I spoke with someone at church today whose husband was diagnosed with Parkinson's two years ago. He is now doing so much better, and she wanted to tell me not to be discouraged, that if we kept trying we will find medication that will really help. She was hopeful for a cure and said the doctor told her husband he would die of something else.

We are only six months from John's diagnosis, and maybe in a year and a half I will be in a positive place the way she is. But I doubt it. We went to a Parkinson's Disease Foundation educational conference last spring in Charlotte and it was clear to me that there aren't any big improvements in treatment in the pipeline, at least in the next five years. Medication has helped, and John is doing well. But I see the signs of how it will get worse. I doubt that in a year and a half he will still be able to travel alone, though I could turn out to be wrong about that.

I do want to get better at enjoying what we have while we have it. But I don't think denial would work for me--I would get angry at what John can't do. And I want to prepare for the future.

2 comments:

Gevera Bert Piedmont })i({ said...

You posted a question about suicide on my Had a Dad blog.
My dad died last November. He had severe brain damage on top of his AD. My mother and I asked that he be denied medicines that would keep him alive in a semi-vegetable state and given those that would relax him into death. That was the best we could do to honor his frequent requests for us to kill him.
As far as for me, I worry that I'd wait too long to kill myself and no longer be component enough to carry it out.
Feel free to email me directly. geverabert3 at yahoo
-Bert
http://alzheimersdad.blogspot.com

Joann said...

I've always been an advocate for euthenasia (even if I'm not sure I can spell it right). What I've found over time with my father and now my exMIL's situation is that whoever has the DMPOA generally is the one the docs chat with. It's important now for John to write a letter "To whom it may concern" that expresses his wishes, while he still has the cognitive ability to express himself clearly. I've done this for my daughter. I've also given my daughter my DMPOA that outlines the specific situations in which I want my life extended or when it's time to withdraw treatment. In my dad's case we put him on hospice and doped him up so that he didn't suffer. He had alz but it was the cancer that killed him. In Betty's case, she's been in cognitive decline for years. We took her off her Aricept and Namanda about two years ago for a variety of reasons. That was easy to coordinate with the doc. Her decline hasn't been nearly as fast as one would imagine. One bad cold or a clot could wipe her out in the next 15 minutes, but in actuality, she might endure for many more years. Jenn and I talk back and forth about what treatments to do and how to handle things, but Jenn has the DMPOA and she ultimately makes big decisions. At some point if Betty's quality of life became too limited, we might make the decision to decline further treatment for anything other than palliative care. Presently her quality of life is pretty darn good. If she becomes debilitated where she is unable to get out of bed, or maintain her dignity, however, I'd be ok with keeping her comfortable and withdrawing life sustaining treatment. I feel that doing so would represent her wishes when she was in her right mind. The trick is to have a doc that will authorize hospice, and/or provide palliative care when the patient is in the hospital for some crisis. That's why it's important for John to write down his wishes and for him to be clear in his DMPOA. It sure can take a long, long time to get to that place though. Betty's been diagnosed with alz for over 10 years now. Her last check up which was last week, she was doing great. As best as I can tell, she may live longer than me.