Alzheimer's Poem

Alzheimer's is a tough road....one that nobody wants to travel.

And people do not know how to deal with it. I get that. Sometimes, when you don't know what to say, or what to do -- it's just easier to say (and do) nothing...

I get that, too. Hey -- I'VE DONE THAT MYSELF in many situations. And, that's okay. Sometimes, it's actually preferable. Because honestly -- I DON'T NEED one more person telling me how sorry they are for me, because this will go on for years....

Really? Does anybody think I don't know that??

There are a few things I've learned that help me. A Lot.

The first thing is try to see this situation from John's point of view. Holy Cow...some days, it must feel like he's landed on Mars and nobody gave him a map. It's painful for me when he can't find the door to the bathroom (which has not moved in 40 years) -- but what must that be like for him? To be lost in the house he's lived in for 40 years? He can't drive, he can't do any of the things he used to love to do...he cannot get himself dressed...

So, when I get exasperated, I just think what it must be like for John.

I want to do my best for John. But I do get impatient...or bitchy....I am always sorry afterwards, because I know he can't help it. But, a very helpful thing is I try to imagine that there is a video camera in our house, recording everything....every word I say....every action I take while caring for John. Like I'm on a reality television show....and I will be judged.

I've joined several support groups -- and this poem comes up fairly often...

Do not ask me to remember,
Don’t try to make me understand,
Let me rest and know you’re with me,
Kiss my cheek and hold my hand.
I’m confused beyond your concept,
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.
Do not lose your patience with me,
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different though I try.
Just remember that I need you,
That the best of me is gone,
Please don’t fail to stand beside me,
Love me ’til my life is done.
– Owen Darnell