Compassion and Disease

I am back at work today. For those of you that don't know, I am a music therapist. Twice each week I run groups at an Alzheimer's Center in Ft Worth. I am reminded constantly at this place of the good a little compassion can do and the ills inattention can cause.

I was listening to my musical love this morning on the way to work, Elvis Costello, and his song Veronica came on. I know that he wrote song about his Grandmother when she was living with Alzheimer's. He gets it perfectly in that song. Everytime I hear it, I'm reminded of one resident or another who fits the lyrics perfectly:

Is it all in that pretty little head of yours?
What goes on in that place in the dark?
Well I used to know a girl and I could have sworn
that her name was Veronica
Well she used to have a carefree mind of her own
and a delicate look in her eye
These days I'm afraid she's not even sure if her
name is Veronica

This first verse is the heart of the pain that families go through. In the media Alzheimer's is often portrayed as an elderly person who can't remember current events, can't make new memories, but remembers the past clearly. This is not true. It MAY be true for SOME who are in the very early stages but for most this terrible disease affects all memories, and they may forget even their own name. It also affects more than memory. It destroys the brain to the point that, in the end, people are unable to take care of any of their physical needs and speech is completely gone. I see family members struggle with this and say to their loved one, "You know, answer the question." But they DON'T know. And they may know an hour from now or they may never remember whatever it is you're trying to get them to remember. Ever.

Do you suppose, that waiting hands on eyes,
Veronica has gone to hide?
and all the time she laughs at those who shout
her name and steal her clothes.
Veronica, Veronica, Veronica

I think the chorus is my favorite part because, in spite of the terrible-ness of it, it makes me smile. I know people like this. I know the nurses and CNAs who shout to be heard by people who are not deaf but simply not "available" at the moment. No amount of shouting is going to accomplish what you want here. In fact, a light touch on the shoulder and a gentle calling of the person's name is more likely to bring them back to the moment.

And I see a lady who is constantly accusing people of stealing her clothes and giving her someone else's stuff to wear. :) This line particularly makes me laugh because how must it seem to them? They're in this place where they feel constantly threatened by people they know they're supposed to know but really don't and "there they go with my clothes! And she put me in this dress that is NOT MINE!"

The next verse talks about memories of a lover. This is common. I hear stories sometimes of lovers who are NOT  the person's spouse. Sometimes it is from before they were married but of course, there are those other times. :) I heard the story from one ex-military man who spent time in Japan. He was half way through the story of his Japanese wife and their 50 children when I realized he was pulling my leg. I said, "15 children?" He said, "No, 50." And grinned big as day. I love those moments. I'm pretty sure he was messing with me but who knows. Made up memories happen during Alzheimer's too. I have to wonder if he had a Japanese lover while he was there who had his love child. It's not like it was an uncommon thing.

Veronica sits in her favorite chair
She sits very quiet and still
And they call her a name that they never get right
and if they don't then nobody else will

But she used to have a carefree mind of her own
with a devilish look in her eye
saying you can call me anything you like
but my name is Veronica

This juxtaposition of  how the person is now to how the family and friends remember them is the main reason why so many family members stop visiting. It is common for the family to visit almost everyday for the first couple weeks and then the visit slowly drop off until eventually they are simply "too busy" to come anymore. The sad thing about this, besides the obvious, is that when the family does come for a rare visit, the resident doesn't remember them at all and is closer to the staff. This makes it even less likely that the family will continue to visit. They justify it by saying, "They won't know I'm there anyway."

And this is where I have to learn compassion for the family members. I can be patient all day with someone in the grips of an illness that affects every part of the brain except emotions and creativity. When they are angry, it is a righteous anger but when they love, it is complete and without limits. They sing with me when they can't even speak and it is because of these small gifts that I have so much compassion and love for them. My patience wears thin though with staff and family members that expect these people to "act normal." This is my challenge, and I am working on it.