Breakthroughs Are Never Small!

I have been playing in the Alzheimer's unit at the Veterans Home for more than a year and half. Unfortunately I'm not sure how long Mr L has been there but it has been quite a while. I don't always get to know everyone right away, especially the residents who are very quiet. He is in a wheelchair and never really says much at the sessions--until recently. About a month ago I did one of my "Name That Tune" themed games (USA Version--songs like My Old Kentucky Home, California Here I Come, I left My Heart in San Francisco etc.). Mr L was right near the piano and named every song I played. It was the first time I ever heard him speak. He didn't sing along too much that day but I thought that was pretty big. Ever since that session, I've made more of an effort to make eye contact with him during the songs and see if I can get him to sing more. A week or two later his wife was there visiting during the session. She was really enjoying the music and singing along. I thought having her there singing would help but I wasn't noticing much difference. Then he sang Take Me Out to the Ballgame! I spoke to his wife afterwards and she told me that he had always ben very musical and played in the Air Force Band and marched in the processional for JFK's funeral. She said he always loved music!

Since then he has been at every session and right near the front attentively listening to all of the music and gradually singing a little bit more. Today I did Name That Tune (Color version-- My Blue Heaven, Red Sails in the Sunset, Golden Slippers etc.) and it wasn't his singing that floored me. As I was setting up, he was right near my keyboard and I looked and him and HE said to ME, "Hello." I said hello back and asked him how he was today and he answered me in a strong voice, "I'm fine. How are you?" and we talked for a minute.

Whoa! This man never spoke to me for the longest time. Now he is STARTING conversations! Woo hoo!! We played the game and of course he named every song before I could even finish some of the clues. And he sang more songs than I've ever heard him sing. AND he was even laughing at some of my stupid jokes and whenever John (the AWESOME activities director on that floor) cheered him on for getting the song right.

I'm not a music therapist and I never claim to be. And I correct people who call me that. I don't know that I would survive all of the hours of interning and assessments and paperwork and everything else you need to do to become one. I have the greatest respect for music therapists and if I was starting college all over again, I would most likely pursue that as a career. I do know that what I do is (in some form) music therapy. I have learned so much in the past two and a half years since I started doing this. One of the biggest lessons I've learned is that you never know who you are reaching or in what way you are reaching them.

Or how long it will take.

I've also learned that no matter how much people might seem like they are "not there" and not understanding, they almost always are.

I know this isn't the funniest or most incredible story that I've shared but almost every day that I play, there is a small breakthrough or connection like this that I feel I've made that wasn't there before.

That is pretty incredible to me--and never small!

Quality Time: The Sequel

In case you aren't familiar with the first part of this story, I suggest you catch up first by reading this (short) past blog of mine from November 30, 2010.

http://rockstar2theelderly.blogspot.com/2010/11/quality-time.html

The story continues...
Yesterday I was getting on the elevator and my "Quality Time Friend" was already in there. I dragged my keyboard in along with my cart and he said, "I'm going down." I think he thought I would be going the other way. So I told him I was too and he said, "Oh. We can have some quality time in the elevator then." I don't know if he remembered me from before. I'm thinking now that this is just his standard pick up line.
"...if you think you can control yourself," he continued.

HA!

"Well, I better stand over here just in case I can't," I said.

He said something else but I don't remember what it was. Then the doors opened and I said, "Ok then. It was nice to talk to you. I'll see you later."

"Was it as good for you as it was for me?" he asked.

"Absolutely."

Eighty year old veterans rock. :-)

A Quick Touching Christmas Eve Story...(not really)

I did Christmas Carol Bingo today at one of my regular skilled nursing facilities today in Cherry Hill. There was a very old woman in a wheelchair near my keyboard and as I was packing up, a well dressed very distinguished looking man came in and started taking to her. I realized that it was her husband coming to visit her. As I was bending over to put my keyboard into its case, I heard her say, "You have a nice ass." I stopped and thought to myself, "Did she just say I have a nice ass?" So I pretended that I didn't hear it.
When I stood up and turned around she said, "You have a nice ass." So I just kind of laughed and kept packing up. Then she said to her husband, "Doesn't she have a nice ass?"
He very uncomfortably said, "Welll...I don't I should comment on that."
I just kept smiling. What do you say to that?
"Don't you like that ass?" she insisted.
"Not as much as I like yours dear."

Merry Christmas Everyone!

Quality Time

Last week as I was dragging my equipment through the Veterans Home, I met a guy as I was just about to get on the elevator. He was a resident in a wheelchair. He was not part of the Alzheimer's Unit where I play though. When we got on the elevator, he said to me, "Ooh. We can spent some quality time together in the elevator." I said, "Sure!" (How else do you respond to an 80 year old man in a wheelchair?) So when the doors closed, he proceeded to complain about how cold they keep it in the building (as I can feel beads of sweat forming on the back of my neck...) Such a sweet talker. Ha ha!

I went on to do my usual session with my regular unit and as I was walking back through the lobby, I saw him again. He said, "Oh! It's you again! Do you want to go back in the elevator for some more quality time?"

HA!!!

I said that I didn't have time then but maybe next week. He said, "Well...OK." and then he paused for a moment and continued, "You're a good lookin' broad."

I've been called a lot of things in my life but "good lookin' broad" has never been one of them. I felt like I was in some 1940s Frank Sinatra movie or something!

I didn't see him this week so I didn't get my "quality time." Maybe next week...if I'm lucky.

Bud

Just a quick one about one of my favorite veterans, Bud. Every week he is there ready to sing and always telling me how much he loves my music. When ever he sees me he says, "Oh, that's the pretty lady that plays the good music." Each week he comes a little more out of his shell and talks and participates more. He loves all of the old sing along songs--Let Me Call You Sweetheart, Daisy Bell, Side By Side etc. I learned today that he also loves Elvis. When I played Love Me Tender, he just gushed about how there was no one like Elvis and he bought all of his records. He even stood up and gave a little example of the famous "pelvis move." I told him I would learn to play Hound Dog for next week so he could show us more of that dance. Jo Jo (my regular "dancing veteran") said that would be great so she wasn't the only one up dancing.

What was especially cool about today though was while I was setting up, it was just Bud and me in the room. He said to me, "Ya know, pretty lady? Have you ever just looked around and taken the time to notice all of the beauty around you? We live in such a wonderful country. We are so lucky." Today was a grey cloudy day. This man's home is basically a hospital setting (Although the Veterans Home is one of the best facilities I have seen.) He has Alzheimer's. Yet he can still take time to appreciate what is important and find happiness in it. He served his country in the Army and I believe that until the day he dies will always love it and not take any of it for granted. How many times do we forget to stop and take the time to notice the beauty in what is around us and to remember how lucky we are to have what we have in this great country? I have been doing this for almost two years now and I am still amazed at how people can find joy in seemingly small things. I've learned that the smallest gesture or "thing of beauty" can be huge to some people. You just never know what your words or actions mean to someone.

At the end of the session, he said that he loved me and my music and wants to marry me. I told him that I didn't think that my husband would like it very much...but maybe I just wouldn't tell him. :-)

Now, I better get working on Hound Dog.

Virtual Dementia Tour

Today I was invited by Lisa at the Veterans Home to participate in a "Virtual Dementia Tour" training. The purpose of the experience is to simulate what it is like to live with dementia. I was a little nervous about it because from what I had known about it already, it was pretty intense. That was an understatement.

When I arrived, I had to take a short "pre-test" questionnaire about my thoughts on dementia. After that I was prepared for the "tour." They placed handfuls of popcorn kernels in my shoes to simulate neuropathy and other pain associated with the feet. Plastic gloves and then cloth gloves on top of that as well as taping some of my fingers together to simulate neuropathy and arthritis. Then they placed goggles over my eyes. They were yellow and cloudy and also had a spot on the middle of each lens. This was to simulate cataracts and decreased vision that is experienced in old age. Then they explained to me that I would be going into a room and be asked to complete five tasks. I would not be allowed to ask questions or leave the room until I was told it was over. They put headphones on me with an mp3 player and turned it on. It was nothing but static and lots of chaotic random noise that some people with dementia have going through their heads all day long. She led me into the room that was dim and read to me the five things I was supposed to do. But I couldn't hear her over the noise in my ears. I said that I couldn't hear her but she ignored me and led me to the area where I was supposed to do the activities. My vision was impaired and there was chaos in my head and I knew there were five things I was supposed to do but had no idea what to do. There was a bed with a pile of what looked like blankets and clothes, a nightstand with a pad and paper, a table with a pitcher of water and cups, a coat rack with coats hanging on it. I knew the women who led me in were watching and I felt really stupid that I couldn't figure out one thing to do. So I sat on the bed. The woman came over and only said, "Do what makes sense," so I started folding the clothes. But it was hard because my hands were impaired from the tape and gloves and my feet were killing me from the popcorn in my shoes. I was becoming more and more anxious even though I knew this was just a "simulation." I felt like I should be doing more so I thought one of the things must have been to pour water into the cup. So I did that, not easily. I didn't know what else to do so I went back to folding the clothes but for some reason it was getting harder and harder to see and at this point I realized that I was talking to myself. Then through all of the noise in my ears, there was a loud siren out of nowhere. It was really startling and I didn't know what to do. At this point I had probably been in there for 3 minutes or less but it felt like and hour. Finally after another few minutes, was led out of the room and back to the table to fill out the post tour questionnaire. When I sat down and took the goggles off, I really didn't know what to do. I filled out the questionnaire. My answers afterward weren't too much different because I know the horrors of living with this disease. I just didn't understand how horrible it could be for some people. One question that did change was about how I was feeling. When I started I was "relaxed" but when I finished I was definitely "anxious."

I think that EVERYONE who works not just with the elderly but in the health care profession in general should have to take this tour. I knew ahead of time what types of things I would be experiencing but until I actually went through it, I really had no idea. Of course everyone is different and some people don't experience all of those things all at once. I do believe that this "tour" was meant to show the extreme situation and maybe it was a bit extreme. But many do experience at least one of these problems and it is so important to understand what they are going through. It also helps explain many of the behaviors that you see that don't make sense to a "normal thinking" person. Lisa told me that when some people go through the tour with a roommate, they tend to follow each other around because it is comforting. That makes sense and explains why you see a lot of dementia patients following others around. As a normal thinking person, I felt really stupid that I couldn't figure out one of the tasks. I think about my mom with dementia and how she must feel all the time when she can't figure out a simple task. She is still very aware of being socially appropriate and she hates to feel like she looks stupid (Who doesn't feel that way?). If you go into her room and give her too many instructions too quickly, it stresses her out. (I knew this before taking the tour.) If someone said to you, "OK--get your bag, turn out the light, put your coat on and get in the chair," you could probably do this with no problem. But to process all four of those things at one time when your mind is impaired is beyond difficult. Add to that the idea that you don't want to "look stupid" and you have a definite recipe for anxiety and poor quality of life. There is also that "look" you see with some dementia patients that is heartbreaking. My mom had it for a while when her anxiety was not under control. It is this perpetual look of fear and confusion. I'm sure I must have had this look during the tour. I was trying so hard to make sense out of everything that was around me but I couldn't no matter how hard I tried. Imagine living with this every day. Forget the popcorn in the shoes and yellow goggles. This ALONE is a horrible way to live. If someone had come up to me at this point in the tour and said, "Oh don't worry. I will help you. First, pour the water in the cup," and then come back after that and said, "OK. Fold the clothes," it would have reduced my anxiety dramatically. Just think how that would improve the lives of real dementia patients.

I've said before that I believe that we need to take advantage of every joyful, happy moment we can with dementia patients because so many of them do live in the moment. (See Jolene Brackey's website for more information on this awesome, yet simple concept! www.enhancedmoments.com ) The more moments of joy we create, the better the quality of life for everyone. Those short moments I spent on the tour were not moments I want to relive anytime soon. I don't believe we can totally erase these bad moments for people. And I don't believe that every dementia patient experiences this type of extreme--but many do. What this should teach us is that caregiver training (for home caregivers and those who work in facilities) is critical for providing the best possible quality of life for these patients. As it is with everything in this life--love, patience and compassion is the key.

See Ya Later, Alligator

Today was my weekly visit to the Veterans Alzheimer's unit. Every week is a completely new experience and I never know what to expect when I get there. It is never boring!

Today I had a great moment with G. He has a couple of very quirky behaviors. One of the things he does is walks up to people and holds out his hand for people to shake. Once he has done that, he will wait for a second and then do it again. This could go on all day if you let it. He doesn't really speak much--at least I have never heard him have any type of conversation except for the following--he will say to you "See ya later, alligator" and then he waits for you to respond "After while crocodile." Then he will say "See you soon, Baboon" and then you say "In the middle of June." Again, this is something he could do all day. I usually engage with him in both of these behaviors for a few times but then tell him I need to set up or do something to move on. He is never upset when people walk away--or even get annoyed with him. He just moves on to the next person.

He came late to the music today and as I was finishing up my last song before our traditional God Bless America ending, he came up behind me and started banging on the keys of my piano--it's not ideal but it doesn't hurt anything so I just let it go. As I was getting ready to sing God Bless America, he said to me, "See ya later, alligator." I said, "G, why don't you sing with me?" Surely he would know God Bless America!

Without missing a beat, he replied by singing, "Seeeeeeee ya laaaaterrrr, alllllligator." Hilarious!!! I was laughing so hard but managed to say, "G, can you sing God Bless America with me?" and before I could start the introduction he was already singing at the top of his lungs "GOD BLESS A-MER-I-CA!!". So I quickly started the song and he sang almost the whole song with me. What was really cool about this is up until this point, I had never seen him sing at all. He was having a ball!

Playing for Alzheimer's patients is an emotional experience but not always sad like one might expect. There can be so many moments of joy and happiness for people with Alzheimer's. They just need help finding it. I've learned to never underestimate the power of these moments. That short moment of happiness can carry a person through for the next 10 minutes, hour or day. Sometimes it is only for the moment that joy is being experienced. Often people don't make a effort to engage with Alzheimer's and dementia patients because "they wont remember it anyway." I hope that I am never a victim to this horrible disease but if I am, I would hope there would be people to help me find those moments and not give up on me. Someone said to me once that he "finds those places depressing." I knew what he meant and I told him that there are some days when I'm not quite feeling my best that I wonder how I'm ever going to get through the visit. But I thought about it for a second and realized that no matter what, I NEVER leave there feeling bad. Often times they bring *me* out of any blues I may be having. They have no idea how much I need them.

See ya later, alligator.