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.

Picture My Day

Before I get into this one, does anyone know how to post MP3 to blogger? Is it possible? 
This is the first post in my story telling through pictures. I'm calling it picture my day. I've been trying to take at least one picture everyday to document even the mundane in my life. I decided to do this when I took my wonderful nephew, Sage, to the Ft Worth Science and History Museum a couple weeks ago. We both had a blast and there were so many things I would have loved to have a picture of, if only I had brought my camera. So, now my camera is in my purse in order to capture even the mundane, so when the extraordinary happens I will have that too! I have seen several other people who do projects like this, so I can't claim it as my own but it will be in my own style. Each picture will have a story.

I started this last Thursday and already I haven't lived up to my promise of at least one picture everyday but I've been pretty good most days.

                               
This picture is through the windshield of my car and I could not fix the colors afterward because of that. It will forever be blue or more blue. This was taken at 5:30 on a Thursday afternoon. On Mondays and Thursday I work at the James L. West Alzheimer's Center in Ft Worth. For those of you that don't know (since I haven't written much on here lately that's probably everyone!) I am a music therapist. My preferred population is children with developmental disabilities (autism, CP, Down's, etc) but I also have experience in other fields. When I first got the call a few months ago from the Program Director at JLW asking if I would be interested in filling the spot that was being vacated by their current MT, I turned it down. The pay was less per hour than I was making seeing private clients and I didn't think it would be worth giving up those private clients to work with old people. I've done that before, no thank you. But then I thought about it a little more. I would be going to one place and staying there all day. Yes, I would have to drive 45 minutes to get there but I was already doing that and then driving around town to see each kid. When I stopped to figure it up, I would actually be saving money in the long run! So I gave up most of my private clients, some of them I was sad to leave and some....not so much. I started working at JLW on my birthday (happy Bday to me...go to work) and had a wonderful time. In fact, I have really enjoyed working there the last couple of months. I will never enjoy it as much as I do working with children but it's been fun! Later that I night I went out for a birthday dinner with my boyfriend, at which we had a huge fight and he asked me to pay for my half (supposedly not related instances). Well, JLW worked out and the boyfriend didn't. That sounds terrible but there were just a lot of little things that didn't feel right. The birthday dinner actually had no effect on my decision. I completely forgot it until telling this story! Amazing what comes back to you.

So are you wondering just yet WTF this story has to do with this picture? Getting there, I promise. When I tell a story, I tell it right!

Every Monday and Thursday I have a TWO HOUR lunch break. I know lots of people would jump for joy over something like this but it's really not that wonderful, especially when you only get paid for the actual hours you work. No breaks, no holidays, no sick leave. Oh, and no insurance. That's another story. It breaks up the day and you just spend two hours in the middle of the day doing nothing. THEN you have to go back to work! It kind of sucks. I'd rather do it all in one large chunk.
This particular day I decided to go have my car cleaned. I will not show you those pictures. Let's just say the car needed it and any one who's been in it will attest to that. I did vacuum the previous Saturday before picking up Sage. It was getting pretty gross and I didn't want anyone else to be subjected to that. So really all they had to do was clean the outside. The guy took one look at my car and said, "This is going to take a little extra work. I might be able to get that stuff off but it's going need a special solvent which will cost extra." Ok, whatever. I came it get it clean so I'll pay the little bit extra. Apparently I had a chip in the windshield too and with one quick call to my insurance (to make sure I really wouldn't be charged for it) they fixed that! About 1:45 I start to get nervous. The outside's been done awhile but the guy cleaning the inside is taking his sweet time. Walking ever so slowly around the car wiping here, scrubbing there, "Oh I guess I vacuum a little now too." COME ON! Just because you're here all day doesn't mean I want to be and I have another group in 15 minutes! Finally at 1:58, he's finished. Yeah, thanks. No way can I be there in 2 minutes grab my guitar and other instruments and be in Bluebonnet (one of the suites) in time to start. So I was late, which means I gave them their full time, making my next group late and I got no break for the next 3 hours. Maybe that doesn't sound so bad after having a two hour lunch break but I can't just sing for 3 hours straight and not be affected by it. I was not a happy camper at the end of the day.

As I'm leaving that day I notice the chip in the windshield is still there! I'm pissed. They made me late and didn't even do everything they were supposed to do??!! So I drive back over there before heading home (this is getting closer to the picture, btw) but the windshield people have already left. So glad they got to have a normal day! The guy that cleaned my car says he thinks the clue just needs to be scrapped a little more, that's what I'm feeling. He swears it's been fixed even though I can see and it will not make a huge crack down the front of my windshield. He better be right or they're paying for it. Promise.

Now, on a normal day I cut through downtown and hit the I-35E about a mile north of I-30. This is a big deal. The I-30 to I-35E interchange is a major cluster fuck. That mile will add at least 20 minutes to your drive, if your lucky. I was not lucky this day. I considered going through downtown from where I was anyway, but when I got to the entrance ramp to I-30 and saw in front of me downtown University was just as packed, I decided to take my chances. They were not good. Just as I'm coming over the bridge to get onto I-35 the truck in front of my slows. See picture above.

I look to my left and I see this:

 

That little arrow is pointing out the clear space just before where I would normally be getting on the interstate. Yeah, not going to be a good evening. Just so you can understand, here's a close up on where I should be.

Do you see the clear space? Should give hope that maybe the traffic's not so bad right? You would be wrong to hope. Because of the wonderful people at the car wash, I will now sit in traffic for over an hour. It will take me 1 hour and 30 minutes to get home: exactly twice as long as normal.

To make up for it, I treated myself by completely ruining my voice! I decided to go out and sing at the open mic at Banter, one of our local coffee shops. I had a wonderful time in spite of the ex showing up. Not so bad actually, I stuck around and sang with him too. It was one of the songs I had added harmony to awhile ago. It's a beautiful song. I also got a chance to try out my new Ukulele song. I'm so excited about this new song! As soon as I have a half-way decent recording of it, I'll post for everyone to hear.