Till There Was You

October 23, 2013

Wow!  It’s been a while – Sorry about that…

I have never been interested in working with individuals.  Since my internship, and since I started working in 2006, 95 percent of my work has been in leading groups of various shapes and sizes.  I have worked with some individuals, but I always felt that the clients I worked with (in facilities where I also led group sessions) needed a little something extra, and I could only use music when working with them, because that is, after all, my job.  So…I left the places that required me to do individual sessions and have not turned back.  Until this past May.

An Expressive Therapist friend of mine had been working with client L. for a while, and he asked me if I would be interested in taking over once he started his new full time job.  I had to think about it – It was going to alter an otherwise ideal schedule and I was definitely not a fan of working with individuals, but she sounded cool, and the work environment was different than any I had been in before. So I decided to take the leap.

L. lives at home with her husband, is in her late eighties, and suffers from Alzheimer’s Disease.  She has been singing and playing piano since she was a tiny child, so she is an excellent candidate for MT services, and is just a fabulous person all around.  Her son is extremely supportive and is a huge supporter of MT, and I am therefore working in a comfortable family home for four hours a week.  And it doesn’t feel like work at all.  Who knew?

I think part of it, is that it’s not all music.  We work together to maintain her skills (musical and non) and we address her goals, which are to increase engagement, brighten mood, increase energy and motivation, increase communication, maintain decision making and verbal skills.

Our loose schedule for the two hour session is as follows:

1. L plays her favorite song on the piano “Till There Was You”

2. We sing our Hello Song – A song from a 1950s movie that I adapted for L (she knows the tune, so we use a lyric sheet with my adapted lyrics). The original song and my adaptation include her nickname.

3. Per the request of her son, I encourage L to maintain focus for twenty or thirty minutes at the piano while we read notation of several songs, some of which she remembers the refrain, but not the introduction. I bring in at least one “new” song (that she doesn’t know well) for her to sightread each session. Each day, I choose several songs that are in the same key, and we play the scale together several times before the songs are played. This requires her to visually focus and actually read the notes instead of playing by ear (which she tends to default to). She loves Barbra Streisand, musicals, ballads, and songs that have a sort of unpredictable and difficult melody, which means I have learned several new songs! When she gets frustrated, she plays Till There Was You again, and I always sing along.  The most times she has played this song in a session was seven.  So far. I also recently learned that she plays “La Vie En Rose” somewhat skillfully as well.

4. We switch places, and for about 15 minutes I play melodies on the piano and have her “name that tune.” We sing each song after she has either told me the title or sung some of the lyrics.  We then walk over to the treadmill.

5. Music Assisted Exercise: We have recently begun doing this after L’s son told me they were having a hard time motivating her to walk on the treadmill. Since she has broken both hips, it is uncomfortable for her to walk for any length of time, and it is dangerous for her to be unsupervised doing this, so her private aide helps us out and spots her while she’s walking.  For three minutes, she walks at a challenging speed (for her, this speed is .7 miles an hour) and I play tunes such as “Zippity Doo Dah,” “There’s No Business Like Show Business,” “Beer Barrel Polka,” “MacNamara’s Band,” “Hava Nagila,” “It’s a Long Way to Tipperary,” and “Seventy Six Trombones,” which all have a similar beat and tempo. She marches on the quarter beats while I march with my guitar in front of her. After the three minutes, we take a short break while she’s still standing, and we sing a song that she might want to dance to (holding on to the treadmill rails) such as “Sentimental Journey,” “Que Sera, Sera,” or “Bei Mir Bist Du Scheyn.” We do two more minutes of walking/marching after our break, which is about all L can do without falling off the treadmill from fatigue.

6. We then walk to the kitchen, sit at the table, and read.  Her son has purchased several Dr. Seuss books, and we read one story each day for about twenty minutes or until L is antsy.  The rhyme scheme in Dr. Seuss stories allows her to sound out words that are more difficult or unfamiliar, and she is able to analyze language. This may be a coincidence, but it seems like her reading skills are much better following exercise than not.

images7. We play a picture matching game.  The game is called Zingo, which is supposed to be a “Bingo-esque” game, but instead of playing the intended way, I line three “Zingo” cards up in front of her, and I tell her that our goal is to fill all the spaces in ten minutes.  I hand her the little picture tiles (which also have a word beneath the picture) for the first three minutes, which seems to get her into the swing of things faster, and then for the remaining time, I cue her to pick the tiles up on her own.  She matches the pictures, and seems to be really happy when we fill up a card.  She usually comes up with a song for each picture, particularly the “Smile” tile, so we hum together while we’re playing the game. Before we put away the tiles, I begin the next exercise, for which I use the tiles in a different way.

8. The Great Day Song – A rhyming song, where I give her the first part of a rhyming phrase and she comes up with the second part spontaneously.  Sometimes the phrases are based on a theme (weather, holiday, season, food) and sometimes they are based on things she is doing or wearing.  When I say, “It’s a great day for being with you,” she often replies with “And it’s a great day for being a Jew!”  She always gets a kick out of herself on that one (she is Jewish). Sometimes I add movements into the first phrase, and she almost always follows cues like, “It’s a great day for clapping your hands…” followed by a clever rhyme of some kind. Since she is unlikely to give me spontaneous suggestions for the first halves of the verses, and I want her to be involved, I have recently started using the picture tiles from the previous exercise to give her ideas.  For example, I will take the tile that has a picture of the sun and the word “Sun” is underneath it, and after I sing, “It’s a great day…” she will finish the phrase with something like “for looking at the sun” or “to sit in the sun”, after which I’ll sing, “And it’s a great day…” and she will finish it with a rhyme such as “for getting it done.” We do this with all tiles that are easily rhymed with, and then the song is over.

9. We do a few theme related songs.  I ask her to choose a color marker she likes (out of about ten markers) and then I choose a different one. I will write down partial song titles on a sheet of paper, and have her fill in the blank with her marker.  Sometimes she fills in the blanks or spells things incorrectly, but this is more of an assessment tool to figure out if she is maintaining her skills or declining.  We then sing the songs that we have talked about without lyric sheets.

Alternatively, We also sometimes do an expressive exercise where I will draw a picture (pictionary-style) with many different colors and I ask her what comes to mind (anything she says, I have her write down below the picture).  I end up drawing about six pictures of animals, people, flowers, hearts, symbols, etc.  Sometimes she comes up with a song related to one of the pictures, so we sing that as well.

10. Song choices.  I give her several choices, each between two songs.  For some particularly wordy songs we use lyric sheets (her son wants her to practice reading) and for some, she uses her memory.  When she wants to sing both songs, I ask her to choose which song we should sing first, and at this point, she can still make a decision about this.

11. Our final task is the goodbye song.  She and her expressive therapist sang a slightly jazzed up “We’ll Meet Again,” as their goodbye song, so we have continued with that goodbye song, and it is clearly a good one, because once I start playing it, she usually makes a sad face and says “Awww…” because she knows that’s the end.

L is one of my favorite contracts at the moment. I think this is because I am able to have a very personal clinical experience with her and her family, and they give me direction if they would like me to try something new.  I also like the flexibility I have to change the session plan around if necessary.  For example, there have been a few times where I have gotten to the house and she was watching her favorite musical on DVD.  Taking this woman away from her musicals is equal to cruel and unusual punishment, so I watch it with her for a maximum of ten minutes, sing along, talk about the characters, and then after a song has finished, I pause it and reassure her that we will turn it back on after I leave.  Other times, though not often, she DOES NOT want to stay at the piano for more than three songs.  I can’t make her stay, and I certainly don’t want her to get agitated, so we just move on to something else.  Yesterday, she wasn’t feeling well, so the entire beginning of the session had to change, but after a few songs, and some conversation about Irving Berlin paired with some pictures I showed her by connecting my laptop to their TV (I’m amazed they had the dongles and cables necessary for this) her energy level increased and we eventually not only completed our “piano time” but she also made it through three minutes on the treadmill before needing to sit down again.

While I don’t think I want to work with more individuals, this experience with L has opened my eyes to a different kind of work, and has not only been good for L, but good for me as well.  I’m inspired to try some new things!

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I am Woman (Hear Me Roar)

November 8, 2012

Tuesday was a big day – regardless of which way we voted – and I’m glad it’s over.

As I stood in line that morning for two hours (freezing my tuchas off outside for one hour, and inside a gymnasium for the other hour) I did some reflecting on what it means to be considered.

In 1920, something big happened.  Women in America, after hundreds of years of being second class citizens, and thanks to the 19th Amendment, were finally given the constitutional right to vote.

In examining this I found out several things: Some women didn’t want the right to vote; men thought that if women were given the right to vote, arguments with their husbands would ensue and break up the family; women were delicate flowers who couldn’t handle such “hurly burly” things; women were too emotional and made irrational decisions which did not belong in politics; men belonged in the public sphere, while women belonged in the domestic sphere; women couldn’t physically handle the consequences of their political actions; there would be more women voters than men, which men feared would cause the government to focus on female views or an anti-male agenda; some men thought that women were already represented and influenced by the men in their family, which would mean that some men would theoretically have more votes than others.  I could go on, but it’s really not worth it.  Women got the right to vote, and even though some women’s rights laws are in danger of being undone if certain people (who shall remain nameless) were to take control of the government, this one is here to stay.

You might wonder what this has to do with music therapy, or my work in general, and believe it or not, I have an answer.  Some women I work with were alive before the 19th amendment was passed in 1920, before wearing pants was acceptable for us, before women were able to enter the same education and careers as men, before divorce from abusive husbands was possible, before birth control was available, before they were allowed run a marathon, before Roe v. Wade. I talk with them, sing with them, drum with them, write songs with them, and because of all that I learn from them.  I’m amazed at how strong they have been in the face of of war, genocide, grief, loss, abuse and exclusion.  In talking with some of these remarkable ladies, I am humbled by some of their desires and subsequent efforts to be more than a wife, mother and housekeeper.  Don’t get me wrong, there are a lot of people who choose to stay at home with their children, who couldn’t imagine life any other way, and that is awesome – and their choice.  But, that choice is really what the women’s suffrage movement, and the current women’s rights movement were/is all about.

Kathrine Switzer, in 1967. She was the first woman to run the Boston Marathon, but not without conflict.  The race commissioner is the man behind her, trying to get her to leave.

Ladies I work with have allowed me to grow as a person this year.  While this was not my first election (it was my fourth!), it WAS the first election where I didn’t take my ability to vote for granted.  I have never felt more privileged than I did on Tuesday, standing in line without anyone telling me I couldn’t, and proud that I was using my ability to vote to try to stand up for others, like those suffragettes did in the early 1900s.

All around the world, women have struggled.  Women ARE struggling.  A few months ago, I heard a story about a female singer in Pakistan, Ghazala Javed, who was hated by religious extremists and assassinated because she was too outward with her talent and voice. Just last month, a 14 year-old girl, Malala Yousufzai, also from Pakistan, was shot in the head by members of the Taliban for going to school, and for being a loud voice regarding the education of girls.  She did not die, and the Taliban who shot her have said that they will not stop until she is silenced for good.  These are just two stories of many that show me/us that we are so lucky, here in this amazing country.  Because we were allowed to vote in the election on Tuesday, some of our rights will be preserved for another four years.

 

Here, we are capable of and entitled to make our own decisions about how our lives are going to go, we elect female political leaders, and we empower each other. No one should be able to make our decisions for us, except for us.  Welcome to 2012.

We are strong, we are invincible…

We are women!

About a month ago, I found out that a place I used to work at, one that I left at the end of January which caused my schedule to change significantly (for good), and which I have talked about many times in this blog, is closing.

The girl who took my place there, L,  called me the day she found out, and the following week I paid a visit to the residents there to whom I promised I’d come back, and simultaneously participated in their music therapy session.

Before I went back though, I had several thoughts.  I thought about L – how she had just taken that position at the end of January and how now she’s losing her job.  Subsequently, I had a selfish thought about how lucky I was that I left when I did, and now don’t have to deal with some of the issues she is currently dealing with.  Of course I thought about the staff and how they may have a hard time finding another job, but most of all, I thought about the residents.  Where are they going to go?  How are they feeling about all of this?  Are they going to be able to keep in touch with the friends they’ve made there?

So…during the group I visited, the new MT asked if anyone wanted to talk about the news they had received.  The residents started out by saying cooly, “What are you gonna do?” “There’s nothing to say,” and “It is what it is,” among other very vague and apathetic-sounding answers, but as the hour wore on, more information came out.  Some became tearful and talked about how “I thought I’d live out my days here,” “we are losing our home,” and “we have nowhere else to go,” and talked about how their families (or lack thereof) can’t care for them at home, so they’ll have to go somewhere else, and how scary it is not knowing where or when that will be.

How terrible it must be, having literally no control in the matter. When a natural disaster occurs – a fire, an earthquake, a flood – I wonder the same thing.  There’s something about the lack of control in all of this that must take a lot out of a person.

The group ended up being a good forum for people to discuss their feelings and I can only hope that they didn’t stop there.  I hope they found solace outside of the group in talking to others about it and commiserating on their uncertain futures.  I hope they were able to keep in touch.  I just hope that it doesn’t kill them in their such fragile conditions.  Or maybe (for those who are emotionally ready to die) I hope the change does something to make whatever end someone might be experiencing more quick and less physically painful.  I’m sure it won’t take away the tasking emotional pain – in fact, it may make it worse, though I hope not.  I have probably too much hope, because I can’t bear to think about one hundred miserable elderly people who have to move AGAIN in the last years of their lives into a new place with strangers and an unfamiliar set of norms.

When I talked to the MT who took my position the other day, she told me there were 34 residents left in the 120+ bed facility.  I can’t even imagine what it must be like to go there right now.  It must feel like a ghost town.

I wonder…when someone’s home is gone, what do they do?

I discuss the idea of  “home” a lot in my sessions and what it means to individuals.  It can mean a country, it can mean a city or state, it can mean a specific house one once lived in, it can be where someone currently lives, and it can be a feeling you get when love and comfort is surrounding you.  The residents at this facility that is closing will have a new home, but I wonder how long it will take for it to feel like home.  It doesn’t happen overnight, and these elders don’t have a lot of time.

I’m going back to visit this coming week, one last time.  I wonder if the reality of it all will be palpable.  I’m sure I’ll get a lot of answers that I didn’t have the last time, and I’m sure there will be more questions.  Here are two more:

In a society that depends on elder housing and relies on space in skilled nursing facilities, how can we avoid this kind of thing from happening all over?

Building codes change and inspection criteria gets more nitpicky, but people still need a home.  Without a home, who are we?

A few years ago, I was searching for apartments with a couple of friends, and came across a spacious apartment in a two-family house not too far from where I live now.  The landlords lived downstairs, which wasn’t ideal, and they were in their early 80s, which was also not ideal (possible noise issues from us), but we took the apartment and ended up having a really wonderful time living there.  I especially, had a wonderful relationship with the two elderly landlords, and even after I moved out, I had breakfast with them every few months and kept in touch.

A couple of months ago I called them to make plans for breakfast and never got a call back.  I got a little worried, but I didn’t want to overreact, so I waited a few weeks to bug them again.  The husband, Sal, answered the phone, and I responded by saying, “S! I called you a month ago and you never called me back!”  His response was the one I had been worried about.  His wife, Coral, who had been suffering from Parkinson’s for years, was sick.  I was going over to the house anyway that night to see my friend who still lives there, so I said I’d stop by to say hello.  What I didn’t expect, was that my hello would also be goodbye.

She hadn’t eaten in a month and had lost significant weight.  She still had her feisty sense of humor, but was weak, and I knew that this was it.  Sal, who loved Coral and had been caring for her for years, told me that he was probably going to take her to the doctor the following day to get some fluids and a feeding tube in her so she could get stronger.  In my head, I was saying “Eek!  She seems to be making the choice to let go – don’t push it!”  My therapist self just listened and validated feelings, and when I needed to leave, I gave them both a hug and told Coral not to let Sal boss her around too much.  She said with a smile and a tightened fist, “I’ll punch him.”

That was the last time I saw Coral, and she passed away a week later in the peace of her own house and her own bed.

Despite this being difficult, emotionally, I carried on, went to New Orleans, and unfortunately missed both of the services.  I haven’t gone back to see Sal yet, but when I do, I’m sure I’ll find a man with a broken heart who wished he could do more for Coral at the end.

____________

When a family member or loved one is suffering, the first thing we want to do is make them feel better.  We want them to be healthy and happy, and most importantly, we want them to be the same as they used to be.  When Sal said he wanted to take her to the hospital to get a feeding tube, he was probably going through that exact mental pattern.  He wanted her to be better.

This brings about a question I have asked before: When do we let go?  What is the point that we let life take its course and let the declining loved one die peacefully and without intervention?  How do we wrap our heads around the rationale when we are so wrapped up in emotion?

I bring myself back to the Terri Schiavo story…How much is too much?  Doctors had said there was no chance that she would recover after trained professionals had tried multiple types of therapy for her. Nothing was making a difference for so many years that she ended up being on a feeding tube in a vegetative state for close to fifteen years before it was decided that she should be able to pass away.  She was fairly young, which I’m sure contributed to her family being so tortured about her situation, but when the body or the brain decides to go, decides not to eat, decides it is finished, for whatever reason, what is the point where we are able to see things from an objective point of view and make a decision that is truly in the best interest for the person who is suffering?

Luckily, my friend Coral was allowed to go in peace.  I’m not sure of the circumstances that led to that decision, and I’ll ask Sal someday, but I’m glad she’s not suffering anymore.  She was so funny, and had so much life, but I know that underneath the surface, she was frustrated that she couldn’t do certain things anymore, and was in pain a lot.  Because she was elderly on top of her health problems, I think it was only fair for her family to let her die naturally, and they did.

I hope someday that I have people around me who will make the right decisions for me when I’m not able to really live my life anymore.

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Names have been changed to ensure individuals’ privacy.

Wake Me Up Inside

April 23, 2012

Last night I finally watched the video of Henry, a man who suffers from frequent seizures and doesn’t respond fluently to questions, but for whom music is an extremely therapeutic tool.  The activity leader at his nursing home found that having him listening to music from his era with headphones was effective in improving his posture, affect, energy, his ability to connect with others, and when the headphones are taken away, is still able to engage with others and answer questions enthusiastically for a bit afterwards.  Oliver Sacks participates in this video, which is actually a clip from a new documentary.

For those of us (music therapists) who see this kind of response every day, the clip is nothing new.  OF COURSE music has the ability to wake us up – to reach places within our brains that we weren’t able to get at with other therapeutic methods.  I’m so glad that people continue to publicize the power of music, and I’m glad that influential scientists like Dr. Sacks are continuing to write books and compile research supporting what I do.

That being said… (you knew this was coming, didn’t you?) the documentary, “Alive Inside” seem to focus on the power of recorded music.  There is nothing wrong with recorded music.  Let me say that again – There is nothing wrong with recorded music.  We have favorite recordings of songs, and favorite singers.  There is nothing wrong with making playlists of our favorite tunes and being able to listen to them immediately.  There’s also nothing wrong with playing recorded music for patients or residents, or them having their own iPod to listen to on a regular basis. Nothing wrong at all.  Except when you call it music therapy.

For those of you reading this who are not music therapists, you may not fully understand the pains we go through on an all-too-regular basis to inform people of what it is that we do.  What is music therapy?  My version is this: Music therapy is the scientifically-based use of music as a therapeutic tool between a clinically trained music therapist and a client in order for the client to reach non-musical goals.  Therapeutic music activities are something that can be provided by anyone, and enjoyed by many.  I have nothing against other people using music therapeutically in their jobs.  I do however, have a viscerally negative response when I hear people talk about music therapy as something that happens when you listen to music in your car.  Or when a care assistant sings with a patient while walking them down the hall.  Music has been around since the dawn of humanity, and many different cultures have found it therapeutic and spiritually enlivening among many other things.  Music therapy, as we know it today, has been around since the first accredited college degree program opened in the 1940s.  It is an official profession.  It is something you must have a degree in to practice.  It is scientifically based.  There is research supporting benefits of music therapy, and I could really go on all day being defensive about what it is that I do every day, but instead, I’ll move on.

After I watched the 6+ minute clip of Henry, I listened to an NPR segment two people sent me the link to about the power of music with people who have dementia.  It mentioned the “Alive Inside” clip for several minutes, which to me seemed coincidental, considering I didn’t know the two were connected. The guest speaker, a social worker, Dan Cohen who runs a non-profit called Music and Memory and who the documentary follows, talked about how his organization got funding to buy hundreds of iPods for a nursing home, so that the residents could have musical experiences (that obviously benefit them) on a regular basis.  A question was posed about isolation and how people already lost in a solitary world can sometimes withdraw when alone for extended periods of time, and he answered by talking about how people who listened to music alone were stil able to connect with their peers following individual music listening sessions, and talked about artists, songs and other information regarding what they had just heard.  That’s so wonderful, right?  The power of music is going viral!?!?! I thought there must be some mention of music therapists in the documentary, or in the clip. It turns out that the woman who hosts the program “All Things Considered,” asked the social worker the following question: “I think the responses that you’re describing are something that music therapists have talked about for years, not just with dementia, but also with say, traumatic brain injury.  What does science say about music and the effects on the brain?”  His response was, “Well…I’m not a neuroscientist. I come in as a social worker and I have sort of a working knowledge of applying this and watching the results.  My goal is to make this a standard of care…” and goes on to say that caregivers could use this program with good results.  I was glad that she gave a shout out to music therapists in her question, but he didn’t mention us at all in his answer.

So, I Googled, “Alive Inside and music therapy” “Alive Inside and music therapists” and a few other variations.  What I found actually made me cry a little.  There were articles, reviews and commentaries about the viral clip of “Alive Inside” that all talked about how powerful music therapy is for these patients.  Remember how music therapy is the process by which a music therapist and a client are working together to meet non-musical goals?  The articles meant well, but the idea behind “Alive Inside” is not music therapy, and there were no music therapists.

You may be thinking, “Hey, you’re missing the point!  This is further evidence now on the benefits of music on folks with dementia and seizure disorders!”  I know, I know… For once, though, I wish that we didn’t always have to fight for our validity.

Music awakens us all in one way or another, so why are most Americans just finding out about it now?

Recently, my brothers girlfriend Emily, who has been very close with her grandmother for years found out her Grandma was dying.  Gran had been declining for a while, which was hard on Em, and she visited as often as possible.  Toward the end, she traveled to western MA to say goodbye, but Gran held on for days and days after she left.  During the waiting period, family members from near and far who hadn’t seen or talked to Gran in years and years decided that this was the time to punch their cards.  They stayed with her for many hours during her last few days, and called Em telling her to come home.  “You should be here,” they were telling her.

Em got calls from the same family members (who chose the last week of Gran’s life to get to know her better) telling her to “say something” to her Grandma over the phone, while  Gran lay non-responsive on the other end, and various other things that made Em feel unnecessarily guilty for not being there. When Gran finally passed, Em was asked to give the eulogy, and was able to share with everyone the beauty of their relationship  throughout the last twenty something years, having nothing to do with the last thirteen days.

When my brother told me all of this over the phone one day, I felt so bad for her I almost drove out to western MA to yell at Em’s clueless relatives, but decided instead to write another blog post about guilt at the end of life.

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Making up for lost time can benefit some, but is it ever really the same?

Here’s my theory:  It is hardly the same.  Em’s family members felt guilty for not being there enough during Gran’s later life, so they sat by her bedside to make themselves feel better.  They weren’t able to see the reality of the situation, which was that Em had been spending loads of quality time with Gran throughout her active years, which was time that mattered to both of them.  It is understandable that they would want to make peace with themselves, but, instead of respecting Em’s own process, they projected their own feelings of guilt onto her, possibly to make themselves feel like they had done more for Gran at the end, which is something that happens all the time, but which is also wholly inappropriate.

Does the end matter?

Here’s my opinion: Yes and no.  The end does matter – lots of things can happen at the end of a person’s life.  People can make amends, emotional barriers can be crossed, and the dying person might feel at peace knowing all their loved ones are close-by.  At the same time, I believe that what matters most are the things folks do together prior to the “end of life.”  Everything we do in life is based on a choice.  Em’s extended family chose not to be close with Gran.  There could have been many reasons for this, but as far as Em knows, it just didn’t happen, and because most people are unaware of themselves and what lies behind their actions, they probably had no idea that the time they were spending with Gran at the end probably didn’t hold even the smallest candle to the times Em or anyone else spent with Gran in her seniority, taking her to Friendly’s, chatting, joking and just being together while it still mattered and could still be appreciated.

As Steven Tyler once waxed poetic, “Life’s a journey, not a destination.”  Which relationship would you hold in higher regard?  The person you spent quality time with during your elder years, or the person who sits with you for a week at the end, when you’re not even able to communicate?

When my grandfather was declining, he was in a nursing home very close to where my parents live and in a region where I work most days, so I spent a lot of time with him in his last several months.  I also felt guilty for not making more of an effort before he declined.  My mom’s sister and her husband had spent years taking care of him, and my cousin Abby went well out of her way to visit with him (and my grandmother while she was still alive) for years before the decline.  None of them were in the area on the last days of his life.  I was, but it was by chance, and there’s no way my mom or I would have called any of the people I mentioned to tell them they needed to be with him in his final hour.

The end of a loved one’s life is a difficult time for everyone.  It shouldn’t be made more so by projected guilt.

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Names have been changed for the privacy of individuals.

We Got the Beat: Part 2

February 8, 2012

For those of you who aren’t music therapists, students/interns or people in a related field…I apologize.  A little.

I try to write about all different aspects of my job, but when I get going on a series like lyric substitution or percussion, I realize some of you may not find this interesting.  That is unfortunate, but alas, this is an MT blog after all.

So…

The next thing I’d like to talk about in my group drumming series is the “check-in.”  I have many instruments I use for percussion groups, as you may have read in the last post, but my favorite is my Djembe.  I love it.  In fact, I just took it out of it’s case to take a picture for you.

So I love my drum.  I got it several years ago at a regional (NER-AMTA) conference from a Berklee alum who had gone to Ghana, had a bunch of djembes made, and came back with drums to sell. Because I love it so much, I tend to be quite protective of it, particularly in the psych unit.  I went in a couple of years ago to find that one of the unit djembes (much smaller and of lesser quality) had been stabbed – right through the hide by something that left a pen-shaped hole.  Poor drum.  From that moment on, I really only let the patients there play my Djembe during check-in (and one other intervention that I will explain later in this series).  Anyway, I lead all of my drumming groups with this drum.  It’s super loud and resonant, and seems to hypnotize people make for easy entrainment.  It’s a special drum, and when patients ask me if they can play it, and I say, “sorry, this is the drum I’m using right now,” they accept my denial and move on.  They must know how much I love it.  Or something.

Anyhoo…I have a couple of adaptations on the drum-based check-in.  Here they are:

1. After I introduce the instruments, I explain that we’re going to wait a couple of minutes to choose instruments (so people don’t get all excitable) and I demonstrate how to use a djembe (off the ground or tilted diagonally while grounded, middle of goat skin makes a deep sound and the rim makes a higher pitched sound).  I then say this: “What I’d like you to do, is say your name and how you’re feeling right now.  Then, play a rhythm or make a sound on the drum that symbolizes that feeling.  I’ll go first.  My name is Foxy Brown and I’m feeling energetic right now (insert frenetic rumble).”

Then I pass the drum to my right or left and prompt the person if they have forgotten what to do.  When they’re finished, I thank them, regardless of what they have said.  If someone wants to “pass” on the check-in, I still ask them how they’re feeling, but don’t force them to play the drum.  The drum makes its way around the circle (we are always in a circle) and when everyone is finished, I have them choose instruments.

2. Sometimes when people do not speak or have very disorganized thought processes, they are not able to participate in the verbal part of the check-in, so I simply ask them to play a rhythm or make a sound on the drum that speaks to how they’re feeling.

3.   Because my drum is heavy and awkward to pass, I sometimes bring the drum to each person and hold it off the ground while they say/play their piece.  This way works best for elders I work with in other settings, but I’ve had to adapt at other times as well, as we all have to.

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When I walk into a room and ask a patient how he or she is, the words I hear are “okay,” “good,” “fine,” or “alright” sometimes followed by a “how are you?” – words I say when I pass an acquaintance in the hall on my way to wherever. When someone is in a locked psych unit, chances are pretty good that there is more to that story, so I encourage people to give me intentional and honest answers in place of polite ones, in any check-in – drumming or not.

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Any other drumming check-in ideas? 

I just watched the State of the Union Address.  There are certainly opinions I have, as we all do, but something I found to be despicable and worth mentioning was the amount of “Booing” from some of the audience members.  I’m confused.  Was I accidentally watching a football game?  Are these speeches really the kind of events that invite opposing parties to “Booooo” each other?  Apparently they are.  My favorite verbal “thumbs down” was shouted out when Obama stated that the agency responsible for making sure that dairies don’t spill milk (as if it’s oil) was going to be eliminated.  Seems like a wasted “Booo” to me.

The President, among many other things, spoke about how we all need to work as a team to keep our country strong.  I won’t share any of my political opinions (because nothing good ever comes of me sharing such thoughts on public forums) but I don’t think it’s a bad idea to work together. I think probably most people would agree with that.

The happier we'll be...

Anyway, I’ve been waiting for a good moment to write another lyric substitution post, and I guess it’s the time…

A song I really only use when talking with residents about friendship, community and togetherness is the age-old favorite kids’ song, “The More We Get Together.”

Here are the basic lyrics:

The more we get together, together, together,

The more we get together, the happier we’ll be.

‘Cause your friends are my friends, and my friends are your friends.

The more we get together, the happier we’ll be.

I use this song with elderly individuals (my population) and while it’s a VERY cheesy song, people seem to recognize and enjoy it.

Basically, first I ask the clients what they like to do when they’re with their friends.  Some suggestions people have shared are: dance, talk, shop, hug, help each other, walk, and play games.

I then begin the song with the original verse, and afterwards, remind group members of something someone has suggested, do that verse, talk about the next suggestion and sing that verse, andso-onandso-on.  Because I want to make sure everyone’s suggestions are validated and used, sometimes other words in the phrase must change.  Example: “The more we play games, play games, play games, the more we play games the happier we’ll be,” works just as well as “The more we shop together, (shop) together, (shop) together, etc.” and might even work better, consider the fact that repetitious phrases are good for people with cognitive difficulties.  The same thing goes for “The more we help each other, (help) each other, etc.”I always make sure I introduce the phrase we’re singing before we start, and give credit to the person who suggested the topic.

You can also adapt the “’cause your friends are my friends” part however you need to for your population or group’s level of functioning.

People can exhibit some disorganized speech or thoughts at times, and a judgement call needs to be made sometimes so as not to make a fool out of the person talking, but otherwise, people seem to be able to answer my question easily and enjoy the activity.

As Obama proposed, the more we work together, the happier we’ll be.  If only politics were that easy.

The Old Grey Mare: Part 2

January 7, 2012

This afternoon, my parents and I took my step-grandmother out for a birthday lunch.  She turned 93 on Sunday, and I must say, she is my hero.

A little background: My dad’s parents were married for a really long time before his mother, my Grammy, died of lung cancer in her 70s.  Things were always touch and go in his parents’ relationship with their four kids and their offspring because of some lingering control issues that my grandmother seemed to have, and things got so bad at times that my grandparents didn’t go to two of their kids weddings.  Somehow the philosophy of “sweep negative things under the rug” kept the family together, even through the really tough times.  Because my grandfather, Pop Pop, was a devoted husband, he went along with some of the crazy things my Grammy wanted and therefore, they both were somewhat alienated from most of the family for years and years.  When Grammy died, my Pop Pop became a different man – probably the man he had always wanted to be, and because of this, our relationships with him changed significantly, and for the better.  He joined a senior bowling league at the age of 75 (the year Grammy died) and shortly thereafter met 80 year old firecracker-of-the-year, Elsie.  They fell madly in love, got married and spent the better part of a decade traveling the world, spending a lot of time with family, and enjoying their life together.  Pop Pop passed away four years ago, but because of our connection with the woman who brought him back to life, we have stayed in contact with Elsie since then.

I wish I had a picture of Elsie.  She’s petite and always dressed to kill.  She wears makeup, keeps active, and still bowls twice a week.  She also doesn’t look a day over 78.  I got to her house a little earlier than my parents, so I went in and we chatted for a while.  One of the first questions she asked me was, “Are you still working with the old people?”  I chuckled and said yes, and we talked for a minute about how hard it is to lose friends and relatives as they age.  She then said to me, “You know, you must have a lot of patience to work with them – old people can be difficult.”

Elsie knows full well that she is 93.  She is as sharp as a tack.  My guess, is that she doesn’t see herself as an “old person.”  She knows her limitations and doesn’t drive long distances or at night anymore, but still lives her life to the fullest, and is even taking a trip to Prince Edward Island this year with her brother and his wife.

One thing that I’m amazed by, and that gives me hope for not only my own life, but the lives of my friends and family members, is that Pop Pop and Elsie met at a time in their lives when they both needed companionship, and ended up finding the loves of their lives.  At 76 and 81, they got married (I have a distinct recollection of Elsie swinging her hips to “The Thong Song” at the reception) and both said that they were never happier in their lives than when they were with each other.  I hope that if I’m ever alone in my later years, I’m able to see light through the fog and have hope that things will be fine as long as I keep living.  Not just being alive, but really living my life until it’s time for the next great adventure.

When I first got to her door, I said happy birthday and gave her a hug, and she said, “I’m not having any more birthdays!”  At this rate, I beg to differ.

You wanna know what’s unfortunate?  That someone who has lived for almost a century isn’t allowed to have what they want later in life, because a nutritionist or a doctor said so.

In this post, I briefly discussed my grandfather’s love for ice cream and the nursing home’s refusal to let him have some.  The fear was that he would aspirate.  At 93.  I don’t know about other 93 year-olds, but my grandfather wanted his ice cream. He may not have actively wanted to aspirate, but he knew he cared less about that and more about his quality of life.  It was one of the only pleasures he was still able to enjoy that wouldn’t make him pass out (Cut to the one and only time he came to my parents’ house after his admission to the SNF – he wanted a Budweiser, drank it, and promptly slept for the next four hours in the shade of a tree outside while 15 members of his family played, talked, ate and drank around him).  Anyway, he wanted his ice cream, and my mother – a tough cookie – fought for his right to ice cream.  And won (after weeks of arguments with the dietary staff).  Should it have been this hard?  Shouldn’t a 93 year old be able to have some ice cream?  Shouldn’t an 86 year old woman be able to have some candy when she wants it, without having to focus on her “Diabetus?”

Looks great, huh? Imagine this every day.

In most elder care facilities, the food is less than ideal.  In “dietary’s” defense, there are some people who don’t have teeth.  There are some people who keep Kosher.  There are some people who have been discouraged from having sodium.  There are some people who don’t eat pork, and there are some people with food allergies.  This all makes a SNF chef’s job a bit more difficult, and because of the volume of food that all has to come out at the same time, it’s probably not easy to make a variety of meals, or food that tastes the way most of us would prefer.  BUT, it should be better.  When I get complaints (yes, I, the music therapist who has literally no control over this) from residents who complain that they have had scrambled eggs with no salt and dry toast every day for a month, it makes me want to bring them a waffle or an omelet or something.  When I find out that the kitchen has produced a chicken and rice dinner every night for a week, I want to go down and talk to the food department. Would you want the exact same meals every day?  I sure wouldn’t.  Would you want to be told you can’t have cheese because you’re lactose intolerant?  Lactaid, people!!  What’s the problem here?????

One of the problems is that there is usually one person organizing meals, ordering products and designing nutritionally balanced menus for sometimes 300 people with different nutritional needs.  That, my friends, is at least a three man job, and maybe that’s the real problem.  How can these issues be remedied?  I sure don’t know, but I have to imagine it’s a financial problem.  I also imagine its because we are deciding what food people can and can’t have at a time in their lives when it really doesn’t matter to most of them.

Alcohol is a little harder to support.  Sometimes, people have long running problems with alcoholism.  Sometimes, alcohol makes people with dementia and those on certain medications more confused, unbalanced, and sick.  But sometimes, someone who doesn’t have these problems and side effects just wants a Budweiser.  Or a glass of wine.  Or a little Jack Daniels.  What’s the harm here, really?  Some places say that a resident can’t have wine because then other people will want some.  Shouldn’t people be able to have a little locked refrigerator in their “apartments” where they can keep their own stuff?  Should other people be able to dictate what their quality of life is?

The thing is, most elderly people (at least the ones I work with) don’t care about the health risks – they care about their quality of life. In nursing facilites, there are doctors and nurses and care staff who decide what’s best for a resident, from what they’re allowed to eat, what medicines they should take, when they should have to go to the bathroom (don’t even get me started there…) when they should go to sleep, when they should wake up – the list goes on.  What are the things that our grandparents and elderly friends get to decide?  In my experience, not a whole lot.  Usually, they’re bound to wheelchairs, aren’t able to go outside more than twice a year and really aren’t living what’s left of their lives.  It’s very sad, and I wish I knew how to advocate.  ACTUALLY…I guess that’s what I’m trying to do.

I can’t save everyone and I can’t change someone’s current nutritional and dietary orders, but I can encourage anyone reading this to put this information in a living will, so when you’re 97 and have Diabetes, you can say you want to have some chocolate or a cookie with actual sugar in it.  When you’re 88 and have high blood-pressure, you can say that regardless of what a nursing home’s dietary department wants, you want to have salt in your food.  You can say that if you are dying for a beer, there’s no reason why you shouldn’t be able to feel like a person again and throw back a cold one (see roof scene in Shawshank Redemption).  Unfortunately, having a quality of life as an elderly person doesn’t come automatically.

Fight for your right to Wine, Cheese and Chocolate!