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.

Memorial Weekend

This past weekend I spent a couple days at my mother's house. The plan was only to spend Sunday night with her and then go to work from there and then stay Monday night too. However, I found out ELVIS COSTELLO was going to be in Dallas playing with the Dallas Symphony Orchestra. Now I understand that not everyone in the world is as much of a FREAK for ELVIS COSTELLO as I am but you would think if I offer to pay for the tickets, people would want to go. No one. Seriously people? Free concert (to you anyway!). I finally convinced my mother to go by promising to come Saturday afternoon and staying the weekend. It turned out to be a wonderful plan!

I wish, wish, wish I had at least one picture of the concert but, alas, I do not. My mom was freak out about someone seeing me and us getting kicked out. Then, at the end she said, "You should have taken a picture at the very end like those other people did."
"But, mom, when I said I was going to, you about tackled me in order to make sure I didn't."

I paid $200 for the tickets. That is the price I didn't pay last time he came, because he came with the Police and I swore I was not going to pay those outrageous prices just because some 80s band got back together. Yes, I like their music too, but COME ON people. I guess things are different when I'm thinking about where I'm going to sit and the fact that my entire two hours will be staring at ELVIS COSTELLO! I love him.

I could have paid for a seat in the chorus loft. If you've never been to the Symphony, then you should know that is the place behind the orchestra. If I was going to the listen to a symphony that'd be great. Cheap seats right behind the orchestra are pretty good, even if you can hear too much of the percussion. Besides, I've always liked the drummers (hehehe). But for the guy I love more than all other singers in the world EVER...it's not good enough. I want to be looking in his face. I couldn't get seats on the floor at all but I could get box seats practically over top his head. So I did, and stared at ELVIS COSTELLO all night! It was grand. My mom was a little unnerved by the fact that we could drop to our deaths if we moved wrong, but I figure it's all in the price of seeing ELVIS COSTELLO.

Now before my grand adventure seeing my music idol, I had to bring all the animals to my mom's house. Poor Lucina. I knew she wouldn't be getting much out time there since my mom also has two dogs and they're not used to being around a bird, so I made sure she got to spend the whole morning having momma time without the dogs. They got to be locked up for awhile.

She loves to cuddle up to my chin while I scratch her neck. One of these days I'm going to get video of her bumping my chin with her beak. This is how she asks for me to scratch her neck. BTW, she doesn't have "red eye" from the flash, she really does have red eyes. The flash freaked her out and she flew away before the next shot:

A few years ago I bought her a wonderful cage, which you can partly see in these pictures. All the bird experts say you have to get your bird acclimated to the new cage, that they'll freak out if you just stick them in before the used to it. So I brought it home and placed it beside the old and let her out to explore on her own just as they say. She went right to it and sat on top and never went back to the old one. So much for experts. To be fair, the old one was TINY. When I saw them side by side, I felt so bad for making her stay in there for so long!

Poor Lucina! Her old cage is at my mom's house so I don't have to lug that huge thing around when we go to visit. This is right after we got there on Saturday afternoon.

She looks so sad!

"Won't you let me out?"

Later the dogs got to go out. If you missed the story I told about Loki and the mouse in the house (my old house, thank goodness), then you just won't get how crazy he is for other other creatures. I'm not sure if the breed or simply because he practically lived on his own for the first two years of his life. Aurora's not like that. In any case, my mom's neighbor is the cat lady. Not only does she have an absurd number of cats, but none of them are fixed so of course she gets a new one every day. Loki HATES cats. He spends the entire day staring at the breaks in the fence waiting for a cat to bark at.

At some point on Sunday afternoon, everyone was outside and a squirrel was in the yard. All the other dogs went nuts barking at the squirrel, trying to get it. Loki was doing this:

And he stayed there.