From a Distance

April 15, 2014

One year ago today, I started this post, but when I opened up this draft just now, dated April 15, 2013, I found it to be blank.

While words escaped me in the wake of the Boston Marathon bombings last year, the thoughts going through my head were erratic and racing, and while they have become fewer and farther between, today I can’t help but incessantly think of those whose lives have been forever changed.  As a city, we are strong, and we’re resilient, and did hate win? No. But as people, we are still human, and we experience loss and grief and physical harm the same as everyone else, and it is devastating, regardless of how unaffected we profess to be on the outside.

A couple of years ago, I wrote a post on my feelings about the ten-year anniversary of the September 11th attacks. I was in college in Boston, watching the news from my dorm room when the World Trade Center buildings went crashing to the ground. While it was a horribly upsetting, confusing, and game-changing time for people all across the country, ten years later I felt that it was not my place to discuss – people affected by the thousands of deaths and generally traumatic experience in NYC were the ones to be honored and the ones to be listened to about their experiences.

This felt different. Boston is my city. Our city. I have lived in many neighborhoods over the years, and just across the river. I have worked, studied, played and made hundreds of joyous memories on Boylston St., and even though I was far away on April 15th last year, I felt the emotional shock wave from the blasts, and it still lingers today. When I think of the horror that the bombs inflicted upon spectators, runners, volunteers, first responders, and passers-by, I still get upset and tear up (as I’m doing now). Those poor people innocently stood, celebrating, cheering – completely oblivious to what was about to happen, in places where I have also watched the event over the years, where I have eaten lunch or gone shopping, where I have walked with friends and felt free and safe.  It makes me sick every time I think about it. The photographs that emerged following the senseless attacks on April 15th, 2013 are stuck in my mind and in my dreams.

I waited to go to the makeshift memorial in Copley Square for several months – I just couldn’t bring myself to be there. When I finally visited, the ghosts of that day (panic, terror, pain, confusion, and grief) washed over me as I walked gingerly around the area that had been covered with blood and debris not too long before, to visit the hundreds of sneakers, posters, clothing, and many forms of tangible prayers and mitzvahs people had left along the sidewalk and in Copley Plaza.

As time went on, and after the alleged bombers were chased down, more and more stories came out (and still do) about people in my life – close friends, family members, colleagues, acquaintances – who had close calls that day. Who could have been right there. Who WERE right there five, ten, fifteen minutes prior to the explosions. I sit on my couch today, at a comfortable distance from anything that would have made a concrete difference in my life, but I feel changed. The remnants of that day in my life are not grief of a lost loved one, a lost limb, permanent disability, trauma, or horrible flashbacks, but the reality is that there is residue, as minor as it might be – frequent tears of empathy and movie-inspired visions of terror in my imagination have been joined by my loss of security, the brutal awakening to the fact that my city – my home – is just as vulnerable as everywhere else at the hands of cowardly terrorists, and the worst – my general feeling of anxiety about being in crowded public places. How different would my world look if I were just a little closer to the events of Patriot’s Day last year?

As real as my tiny little experience is, I am removed from what happened by several light years, it seems, which is a strange place to be, considering how connected I feel to what happened. I can’t even begin to imagine what it feels like to have been a spectator or a bystander that day, not to mention a medical volunteer, or a first responder, or a victim…or a victim’s family…

Thinking about the devastating things that happen in this country and around the world every day is upsetting and exhausting, and a small part of my hope for this world is crushed every time I turn on the radio, but what I hear and read doesn’t usually haunt my dreams. When something happens far away from me, I can’t picture myself there. It’s hard to feel as connected to a place you’ve never been, than the one you’ve lived in for half of your life. I think that’s what makes all of this much harder for me – for all of us in Boston – no matter how small the death toll was in comparison to other tragedies in our country or in the world, it happened at a sacred event, at home.

To end on a positive note…

Our city is moving forward. We will never truly get over this, but with every Spring, with every April that the world keeps spinning and the flowers keep blooming, I have hope that the marathon will begin to feel free and safe again. Time may not heal all wounds, but it might help those of us farther away from it all.

 

 

 

 

Heart of Glass

January 20, 2013

Disclaimer: This is a controversial topic, but something I have touched on before.  It also has nothing at all to do with Music Therapy.

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“Mom’s doing great. She did have her defibrillator replaced and she came through with flying colors.  She’s having issues with swallowing, which is a part of the latter stages of Alzheimer’s, but overall she’s doing extremely well.”

This is quote I heard in June of last year on an NPR program called Family Matters.  The program followed three caregivers of elderly relatives over two months and covered important issues spanning the topic of elder care in the home.

When I heard the quote, my gut reaction was to call in to the show, but I refrained and instead ruminated on it for a year.  It’s not about the woman who said those words, or her mom, or my opinions.  It’s about the system, and about our collective inability to let go of ailing and aging loved ones, even at the natural end of life.

In preparing to write this entry, I looked up “stories about elderly people being kept alive with pacemakers” “difference between a pacemaker and an implantable defibrillator,” and several other phrases that I thought would help.  Here’s what I found:

A pacemaker (taken from this website) “[keeps] the heart beating at the proper rate and from beating too slow. You can adjust the pacemaker so that it can be suitable for either the top or bottom heart chambers or both, depending on what type of pacemaker it is and the needs of the patient. It also will only work if it is needed, it doesn’t work all the time.

An implanted defibrillator is a bigger device. It is there to prevent death from a cardiac arrest. The device shocks the heart if it needs to be shocked, because of a life-threatening rhythm disturbance from the lower chambers of the heart. It can correct this rhythm. Because it has a pacemaker built into it, a defibrillator also has the capability of stimulating the heart like a pacemaker, to help stop fast rhythms, at times, and to prevent the heart from getting too slow.”

So, what I’m taking from this is: Ida, the 89 year-old woman with end-stage Alzheimer’s who is having trouble swallowing, just had her defibrillator (a piece of technology which restarts the heart if it stops and regulates heart rhythm) replaced.  Because this conclusion is ginormously disturbing to me, I looked up what kind of  procedure one must endure in order to have one of these lifesaving devices.

Here’s what I found:

It is a minimally invasive surgery which only requires local anesthesia and has few risks.  The risks are, the defibrillator not working or not working correctly, a person having sensitivities to the device itself, and infection.

I also found this:

ICDs are “moderately cost effective in preventing sudden cardiac death,” according to a report in Circulation: Journal of the American Heart Association.  Every ten years, it’s “only” $24,900.

While I would love to believe that Ida’s daughter was the one who decided that this was a good idea out of love for her mother, I believe there was something else at play.

This forum shares several individuals’ stories about this very topic, and most of these guilty souls had been told by doctors and medical professionals that prolonging a declining relative’s life was something to seriously consider, regardless of the quality of life.

What happened to letting someone die with dignity?  What happened to letting someone die, period?  The heart can do amazing things, and medicine can do amazing things to keep the heart working, but when a person is going through the natural aging process, which sometimes (and unfortunately) includes disease, when do we decide to let the body do what it’s supposed to?  I’m sure it’s different in every case.

A year-or-so ago I read an Op-Ed on this topic.  I searched far and wide for this story, and finally found it here.  It’s a brilliant story of a family’s tortured ambivalence about their patriarch who is kept alive far longer than necessary all because a cardiologist would not perform hernia surgery without previously inserting a pacemaker to correct an age-related slowed heartbeat.  Toward the end of this article, the author mentions the same forum I referenced two paragraphs ago, and talks about issues we should all be aware of.  I beg you to read it.

It also prompts a different question…When do we ignore doctors’ recommendations?  If they are good enough at coaxing, they make a lot more money, regardless of what they believe in their heart of hearts is the right thing to do.  We trust doctors to help us survive, remain healthy and give us sound medical advice, but we also trust them to make the right suggestions for our overall wellness.  In our culture of greed, some doctors might as well be Wall Street bankers. Advising a family to consider life-prolonging surgeries and devices when what the device is doing is delaying the inevitable at an emotional and financial cost, is a tricky thing – it often causes guilt in the family and can cause more pain and suffering for everyone involved.

And another question: Who gets to decide what quality of life is?  My idea of a good quality of life is much different than someone else’s I’m sure, but there must be an objective answer somewhere.  I was recently talking with my boyfriend’s mom about this issue.  She told me that my boyfriend’s late grandmother, his father’s mother, had an ICD implanted and replaced two different times.  When she first had it implanted, she was in her 60s and had a good number of possible years left of life.  Though she was never in great health in her later years, before she passed last year she was in rough shape and had had several other health problems that kept her from living her life the way she may have wanted.  BUT, it was her choice.  She had decided that she wanted to be kept alive at all costs, so what can you do?  We have to honor our loved ones wishes, but the problem occurs when families haven’t talked about these issues and caregivers are forced to make difficult decisions for their disabled parents or loved ones.  The amount of love, guilt, and feelings of responsibility for someone else’s life can really get in the way of making appropriate decisions, which may or may not have been why our friend Ida (from the first paragraph) just had her ICD replaced, and may or may not be the reason why people with advanced dementia or a terminal health situation receive triple bipass heart surgery, liver transplants, or even CPR (which I wrote about in THIS post).

I’m glad that I have talked about these issues with my parents and the people around me.  I’m glad that my parents recently rewrote their wills and advance directives and don’t want there to be any unanswered questions.  They recently made me their Health Care Proxy, which will give me (and my brother, who will also have access to their documents) the ability to make decisions based on what they want in the future, if their hearts stop beating, and when life starts to do what it was always meant to: to end.

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.

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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.

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.

No matter how many times you experience it, and no matter how old you are, loss is still a giant bummer, and with loss, sometimes emotions get the better of your decision-making skills.  When one has a family member who is declining, there is usually a perpetual feeling of loss (usually accompanied by some kind of guilt) and sometimes that emotion becomes very counterproductive for everyone involved.

I’ll start with an anecdote:

Several months ago, a man stopped breathing immediately before my music therapy group.  I have told a short version in another post, but I actually found out today that there was more to the story than I was aware of.  The man was a “full code,” which means that whoever was around was required to do as much as humanly possible to keep him alive in the case of cardiac or respiratory arrest.  He was an older man, maybe 80 years old, who had moderate-severe dementia and was in poor physiological health, and his daughter (also his self-assigned Health Care Proxy) had decided, in the absence of a living will for him, that she wanted her dad to live as long as possible. When EMTs and nurses were unable to resuscitate this man after trying for 20 minutes, his daughter berated, blamed and yelled at the nurses and EMTs for not doing everything they could to keep him alive.

I don’t know this woman, so there could be other issues at play, but I do know that screaming at the people who tried to save your father seems like a grief response.  In talking with a colleague in SNF-land this afternoon, I gained some insight into the process.  She suggested that I mention the responsibility that people sometimes feel for their loved ones when they are declining.  It is my guess that the woman who yelled at the nurses and EMTs was actually not angry with them, but maybe was angry at herself for not being able to keep him well or alive.  Maybe she hadn’t had time to say goodbye and she felt guilty for not visiting enough.  Maybe she was terrified of the grief that would descend in the event of his death.  Whatever the reason, though, she made decisions for him that weren’t actually for his welfare.  Not only was he older and in poor health, but the very process of saving an elderly person’s life with CPR and defibrillators can actually do more harm than good – they can come away with further brain damage from a lack of oxygen or cracked or broken ribs, not to mention the emotional stress.  Here are a couple of facts for your information:

90% of elderly patients who have cardiac arrests die despite CPR.

3% of elderly patients with dementia who undergo CPR leave the hospital and some of those suffer anoxic brain damage. (http://www.uaelderlaw.org/advance/4.html)

Would you want to be saved?

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As individuals with our own opinions, ideals, morals and values, there is no right or wrong answer, there is only a right or wrong answer for each of us.  We have the right to make decisions for our futures, and we need to take advantage of that so that someone else isn’t making decisions that aren’t right for us.

In the previous post, I discussed Advance Medical Directives and how helpful they are in assuring us that our wishes will be carried out even if we aren’t conscious or oriented enough to make decisions for ourselves.  Sadly, even living wills aren’t a guarantee not only because of guilt and grief, but also because of oversights and medical intervention, which I won’t go into.

When we write and sign living wills, the people we give copies of them to are equally as important as the actual legal documents.  This is because people become emotional, irrational, guilty and resentful surrounding loss, and sometimes make decisions based on their own feelings instead of what’s best for their loved one, themselves, the rest of their families, and the country as a whole.  People sometimes can’t emotionally carry out the actions designated in a living will and and up going against the person’s wishes because of their own guilty feelings or hesitation to let go, so it’s important to have other people aware of your needs as well as your Health Care Proxy and Power of Attorney.  Not only this, but we can’t possibly think of all of the potential scenarios that could lead to someone needing to make a judgement call, so often, someone has to make a choice anyway, regardless of how careful we are in writing our living wills, but it’s worth it to try as hard as we can so the burden isn’t placed on someone else

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Last year, my grandfather died.  He was 93, had vascular dementia and was unable to walk toward the end.  When my mom and her sisters made the decision to follow his advance directive’s orders, it seemed very obvious to me that this was the right thing to do, but he wasn’t my dad.  I loved him, and he was a wonderful grandfather, but there’s something about a parent/child relationship that is different than anything else.

Despite my many attempts to ease her mind, my mom still feels guilt and regret sometimes for not being able to do more for him toward the end (she visited him almost every day, but always felt guilty when she wasn’t able to).  She knew in her mind that letting him go was what was best for him, first and foremost, but in her heart, she felt like she had killed him.  Since he passed, we have talked about her feelings a whole lot, and she has definitely been able to move forward, but it’s taken a while.

I think it always does.

Let’s forget for a minute that I used a Backstreet Boys song as the title for this/these post(s)…k?

When they began getting older, my grandparents (mom’s side) started thinking about their futures. Around 1993, they signed documents stating what they wanted in later years.  Still cognitively able and comfortably aware of what happens at the end, they wrote and signed advance medical directives, giving the health care system and their families permission to let them peacefully “go” if something unexpected and damaging were to happen.  In 1993, my grandfather was still working as a veterinarian at the age of 76, and had all of his faculties still intact.  What he decided he wanted was to not be treated for certain illnesses if he wasn’t going to be able to bounce back to his usual lifestyle.  This makes sense.  He and my grandmother, until around that time, were avid bikers, and would frequently bike from their house in Montpelier, VT to visit friends and family miles and miles away.  He was still working.  They were still traveling all over the country together and had just taken a trip to Greece.  My grandmother later died of cancer in 2004 after a ten year struggle with Alzheimer’s-type dementia, and my grandfather (Grampa) was left to deal with his aging body alone.

 

He was a very rational man, and he wanted a DNR.  He wanted a DNR and he didn’t want to be put on IV antibiotics in the case of pneumonia (he always referred to pneumonia as “the old man’s friend”).  He signed papers deciding who would be his Power of Attorney (the person who is designated as the financial and legal “decision maker”) and his Health Care Proxy (in charge of medical decisions) in the event that he could no longer make decisions for himself.  He knew the kind of life he would be happy with, and it didn’t involve lying in a nursing home bed being force-fed pureed foods.  It actually didn’t involve being in a nursing home, period, let alone one that would eventually put him on “thinned liquids” so he wasn’t even able to eat ice cream, one of his favorite foods.  But I’m moving too far ahead of myself…

How do YOU want to be treated medically?

When he began to really decline in the summer of 2009, and for the months until his death in October of 2010, he seemed to forget a bit of who he used to be, and the “new him” wanted to be treated for everything under the sun.  He got pneumonia at one point (before anyone thought to look at his living will) and it was decided that he would be treated for it with IV antibiotics.  He came out of the pneumonia, but his elderly body was thrown for a loop, and he never quite got back to his old self again.  He had numerous infections after that ranging from UTIs to surface wounds gone bad, and all of them were treated with antibiotics.  When he had enough syncope episodes (also called Vasovagal episodes) to sink a small ship, he moved from his dementia specific Assisted Living to a nursing home close to where my parents live.  Shortly thereafter, someone found his living will and advance directives, and found out what the lucid, reasonable, rational man from 17 years ago had wanted.  The shell of who he used to be who was now living a zombie-like existence for the 1993 version and making poorly-thought-out decisions for him.  This is where the advance health care directives came in handy, because the next time he got pneumonia, in early October of last year, my family decided to follow the younger model’s directions instead of making decisions based on their own emotions and guilt.  That’s what those advance directives are for.  He died three days later, and you know what?  He looked peaceful.

In my years working in health care, there are some disturbing, alarming and depressing truths that I have come to realize.

One of them is that we are medically treating very elderly people for symptoms and illnesses that sometimes just come with the end of life (read this post for further thoughts on the matter), and which are all part of “natural causes” (when someone actually dies of those).

Another, is that we (the health care systems, and patients’ families) are sometimes trying so hard to keep people alive for as long as possible, regardless of their prognoses or levels of consciousness, that we aren’t always thinking of what’s best for them.  A good example of this is the controversial Terri Schiavo case.  You are probably familiar, but basically, her legal guardian and decision maker (her husband) had made a decision to remove her feeding tube after she had been in a vegetative state for eight years, based on a reasoned fact that there was little to no hope for recovery.  Her parents, on the other hand, wanted her to be kept alive for as long as possible because they believed she was still conscious.  Everyone’s heart was in the right place in this situation.  No one was trying to do anything wrong, but the whole courtroom drama could have been avoided, had Terri had a living will stating how/if she wanted to be cared for in the case of a traumatic and life-altering event.  She was kept on a feeding tube as legal battles were carried out for six additional years.  Six years!!!

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These kinds of stories of which (unfortunately) Terri’s case is not the only one, drag on for years and years, simply because someone wasn’t prepared.

Really think.  REALLY think about how you want to be medically treated if something life shattering were to happen?  Would you want to be kept alive via intubation if there was no hope for recovery?  Would you want to be treated for Metastatic Lung Cancer if you were 83 years-old?  If you were declining in health with a diagnosis of Alzheimer’s Disease and you had stopped being able to feed yourself, would you want someone to feed you?  You may have thought “yes” to these, and that’s your choice, but when you don’t make a living will, which legally designates someone to make these decisions for you, you run the risk of having someone make a decision FOR YOU that you would definitely not want.  Imagine if you were Terri Schiavo, trapped inside her body and deteriorating mind and you wanted to pass away…And you couldn’t tell anyone to take away your feeding tube.  Imagine if you are 96 years old someday and when your heart stops beating, a nurse realizes that you are still a “full code” and EMTs spend 20 minutes resuscitating you.

When the time comes, don’t you want to decide?

The Great Gig In the Sky

October 24, 2011

As someone who works with elderly clients, I experience a lot of loss on a pretty regular basis.  I go into each session hoping all of my clients will still be there, but knowing that may not always be the case.

I’ve made my peace with death.  I really have.

La Jolla - The best place in the world to work ridiculously hard.

When I was in my internship, I was working at Scripps Memorial Hospital in San Diego in the ICU as part of my job.  It was intense, but there were so many people I worked with who were so touched in so many ways by music therapy that it made it all worth it.  There was one experience in particular that sticks with me to this day…

What ended up happening, was this: A 20 year-old had an accident in the ocean on either a surfboard or a jetski (details are foggy) and was in a coma.  After his family conversed with his doctors, they found out that if he were to come out of the coma, he would not be able to live even a small fraction of the life he once experienced and loved.  His family decided that the best thing for him would be for them to take him off of life support and rush him to the Operating Room so his young, healthy organs could be given to someone in need.  I came into this picture five minutes before he was extubated.  I was working in the ICU that afternoon, and his mother approached me, and told me that her son loved the Beatles and asked if I’d play a couple of songs while his family and close friends said goodbye before he was taken to the OR.  I played a slow (Joe Cocker-esque) version of “With a Little Help From My Friends,” and the old MT standard, “Let it Be,” while this was all taking place, and I felt like I was looking at myself and the situation from somewhere outside of my body.  It was so unreal.  I don’t know if I was sad, but I do know that I needed to take the rest of the afternoon off.  And I did.  And then I was fine.

I reflected on what had happened, and decided that it was my job to provide a service for people in the ICU, and that the real loss wasn’t for me, it was for that kid’s family and friends.  I sucked it up, and went back to the ICU the next day.  I have lost many clients over the years since then and have been present during some clients’ passings, and I’m always fine and usually honored to be there at such a significant time in someone’s life.  Maybe it’s because I haven’t had any traumatic losses in my life, or maybe it’s because I compartmentalize well, or maybe I have a disorder where the only losses that affect me emotionally are romantic relationships and when animals die in movies.  I don’t know.  OR…maybe I can let go of my personal issues for the sake of my clients.  Yeah – I like that one the best :/

Loss is hard, and for a lot of people, but…it doesn’t seem like it’s very hard for me.  When a client passes away, I process quite a bit with the people that client was close with, and I process with my students if they knew the person, but I don’t really feel like I need to process with myself that much – until my blogging began that is.

In the spring, a man in one of my groups stopped breathing literally minutes before my music therapy group was supposed to begin.  I asked my student to remove the two residents already in the group room, and I notified the nurses that something was going on.  We waited down the hall for twenty minutes while EMTs tried to revive him, and finally, we learned that he had passed away.  My student needed to process quite a bit, and never quite got over the whole thing.  I can’t say I blame him, but I was fine. I feel that when people are elderly and in poor health, passing away is not only inevitable, but often a blessing, so when I learn of someone’s death, I’m more relieved than anything else.  I’m happy I was able to contribute something to the end of their life, and increase the quality of it to some extent.  Most of my clients are so unhappy in their old age (outside of music groups) that they talk about being “ready,” and who am I to deny them of those feelings?  Who am I to decide that it’s sad?

Jazz funeral in New Orleans

In recent years, I have subscribed to the New Orleans Jazz Funeral perspective on death.  This is “THE” number, as in – “Oh lord, I want to be in that number, when the saints go marching in.”  This is why people march in procession to jazz music instead of sitting sadly in a church basement eating cheese and crackers.  This is why they call it “The Great Beyond,” and why in “Swing Low, Sweet Chariot,” the narrator wants to be carried “home.”

In the spring, five of my clients – regular group members – passed away.  I learned recently that seven residents I used to work with at the dementia-specific AL passed away between April and July, and one last week (A. from Young At Heart) and in the past week, three clients at one of my SNFs died, one of whom I did individual sessions with, and two of whom were regular group attendees.  I also learned today that G., of the last statement in this post, is in the hospital.

I am sad that it may not be too long from now that G. won’t come back to my group, but I’m happy for her, if she’s finally able to be taken from her suffering.  In my work, I find it harder than anything else to watch as my clients become frustrated when their bodies aren’t responding to the end of life the same way their minds are, and are treated medically (!!!) for symptoms and conditions that are actually just a part of the body’s decline, and would allow them to be released with some semblance of dignity remaining.  This is where hospice comes in, which I believe is one of the most valuable systems our society has in caring for aging or terminally ill people.  It’s just not used enough.

This post was a forum for me to express my own thoughts on death and dying, as I learned of two deaths today, and I hope that even if you disagree with what I say, you can understand the place I’m coming from.

“And I am not frightened of dying, any time will do, I don’t mind.  Why should I be frightened of dying?  There’s no reason for it, you’ve gotta go sometime.” –Pink Floyd

Speak to Me/Breathe

September 26, 2011

Several months ago, I was feeling impulsive on LivingSocial and purchased a 30-minute psychic reading for myself at the Original Tremont Tearoom.  Long story short: The man I spoke with on Friday, Peter, read Tarot cards for me insightfully, telling me that I have the tools to make my dreams come true, I just have to stop thinking things are never going to happen, and use the tools to make stuff happen.  Classic me.   He also told me that my current career is actually just a base for what I’m really going to be doing in the future.  There were many other things he told me that weren’t good or bad – just things I needed to hear.

The first card that was drawn for me.

Anyway, I’m not writing this post to tell you all about how I spent my Friday lunchtime.

I work with a wonderful, caring, sensitive nurse at one of my contractual facilities.  I’ve known her for five years and we have a good working relationship.  On July 4th, her 29 year-old daughter didn’t wake up.

This has actually been something of a regularly occurring tragedy in my peripheral social and work life, unfortunately.  Just two years ago, a colleague and former professor of mine lost her son, roughly my age, in a similarly mysterious and untimely way, and last week, a girl I went to high school with passed away from a heart attack, suddenly.  It’s unimaginable what these parents have gone through.  I just can’t imagine.  I can’t speak for them, of course, but I have to think that if I lost a child, I would want to talk to people who could imagine.  I’d want to talk to someone who could speak to me.  Who could share their story and coping skills with me, and not feel uncomfortable around the subject of death and loss.

So, I had been wanting to ask this woman I work with how she’s holding up for a while, but there were always people around, or she was busy with patients.  Yesterday, I told her and a few other people about my psychic experience and how useful it was, despite its abstract nature.  This woman, T., brought up the fact that she had scheduled an appointment with a medium to help her deal with some of the grief she’s feeling.

Shortly after this, everyone left the room.  I don’t know if they left because they were busy, and it was a coincidence, or if they became uncomfortable with the conversation, but I had a really wonderful and emotional conversation with T. after that, and she shared some things about her daughter that she said she hadn’t been able to say to anyone yet.  Apparently T’s daughter had struggled with an eating disorder and they think her heart failed as a complication, but that wasn’t what we talked about.  T was able to talk about her daughter with me comfortably (though I was tearful the whole time) and told me of all the reasons she was proud of her, and all of the wonderful things she did for people in her life.

During our conversation, she mentioned a song I hadn’t heard – “Just Breathe” by Pearl Jam.  When T’s daughter passed away, some of her journals were found, and in them, she would remind herself to breathe through whatever issue she was experiencing – this song was played at her funeral, and is one of Pearl Jam’s earlier tunes.  Appropo.

T told me I should check out the song – I didn’t hesitate.  When someone is grieving, to put it in T’s words, “It just sucks.”  It really does, I’m sure, though I haven’t experienced any significant or upsetting loss in my short life.  If someone is feeling constant pain and sorrow, what’s worse than people not wanting to bring it up.  It’s not only a huge elephant in the room, but people need to talk about it.  I’m so glad I was there yesterday and could lend an ear to someone who needed one.

When I hear The Band Perry sing “If I Die Young,” I always think of T, and the part in the song, “not even grey, and she buries her baby,” I get shivers and it makes me want to cry.  In fact, I just needed to take a minute to get myself together in order to finish this post.

Sometimes, when we’re in our darkest hour, the worst thing is silence.  Hopefully there are people around us who can help break it, but if not, we should explore other avenues.  My friend T is going to a medium in a few weeks to gain some insight to her own thoughts and feelings, but also to maybe, just maybe, hear something she needs to hear.

I did not allow myself to get wrapped up in the 9/11-themed week that just ended.

Yesterday, I spent some time thinking and reflecting about that day, and certainly reminisced with co-workers about the whole “where were you that morning?” question, but I chose not to re-watch footage from that horrible event or get into all of the drama.  I cleaned up my apartment, went to work, spent a few minutes with my mom, visited my boyfriend at a photo shoot he organized and then went out for sushi.

At the doctor’s office this morning, the nurse who administered my Tetanus shot (yay.) asked me if I paid any attention to the repetitious nature of yesterday.  I told her I hadn’t, and immediately felt guilty for not being more interested until she said she hadn’t either.  A short but effective conversation ensued about that clear, blue, devastating morning ten years and one day ago.

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I was a sophomore in college and was not a fan of wake-up calls from my mother.  Actually, I wasn’t a fan of waking up in general, and was not expecting a call at (gasp!) 10:15 AM on a Tuesday (I had probably been up late Swiffering the floor of my dorm-suite as I was known to do in those days).  Anyway, my mother told me to turn on channel 7.  I eventually tuned in after begging her to tell me why, unsuccessfully.  The tower was on fire.  I was speechless.  The TOWER.  Holy. Crap. There was only one tower there.  The remaining tower fell before my 19-year-old eyes, several minutes later, and I spent the rest of that day hanging out with my roommates, crying, trying desperately to call my good friend at NYU and my cousin (who was/is a flight attendant for United), eating Chinese food and ice cream, and watching the planes hit the towers over and over and over and over again.

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That’s my whole story.

Some people’s whole story is much different, and I felt silly and melodramatic when I told my “where were you?” story to several people when they asked yesterday.  My story is ridiculous.  After that day, I felt no ramifications.  I felt frustrated with and was disappointed in the state of our world.  I felt angry at our president, who I believed was to blame at the time.  I felt helpless when I realized just how intolerant and hateful those terrorists were, and how intolerant and hateful so many people in my own country were.  But I didn’t feel the loss or the pain or the real-life horror that survivors of the attacks and thousands and thousands of victims and all of their families and friends felt.  My empathy for those people was substantial, but it was also inconsequential.  I felt so useless.

Since becoming a music therapist, I experience empathy much more intensely than I used to, and have not watched the news regularly in I don’t know how long.  When my boyfriend wants to tell me what he learned in the New York Times on any given day, I often can’t handle the information I’m given, because I’m just so overwhelmed.  I see so much pain, every day, in all the clients I work with, that outside of work I don’t feel I need to absorb any additional emotion.  I realize that this bury-my-head-in-the-sand technique is not necessarily healthy, and that it’s not helpful for anyone, but I prefer to dream.

I prefer to dream that people are generally good, honest, tolerant, altruistic, generous, considerate, peaceful and understanding.  When I dream, I dream that Israel and Palestine will find some common ground and make peace someday.  I dream that religious extremists – ALL religious extremists – will exclude intolerance, hate and violence from their teachings.  I dream that children in this world will be born into societies that accept and nurture them regardless of their gender, ethnicity, religion and culture – societies that won’t preach that they’re right and that someone else is wrong.  Societies that would never think of killing innocent people based on differences in politics or religion.

In reality, for those who aren’t a part of the conversation in my head, I do understand that chaos and peace have always been at odds.  I know that since the world began, people have warred and blamed and hated and judged, and acted violently in the name of Jesus, G-d, Allah, or Shiva (among many others, of course).  I know that there is absolutely no way that there will ever be complete world peace.  I know this, because with every passing day, people seem to become more and more closed-minded, judgmental, greedy, dishonest, selfish and self-righteous.  How can our planet, our Earth, succeed in achieving world peace with those negative personality traits?  One can dream.

I have to dream.  I have to believe that the world is a better place than it is.  I have to sing “What a Wonderful World” with clients several times a week and I have to believe it.  I have to see the beauty in the world and make “Que Sera, Sera” my mantra.  When my elderly clients reminisce mournfully at the loss of millions of people during the Holocaust and WWII as if it was yesterday, I feel I have to tell them that things have changed so they can sleep at night.  I celebrated almost too enthusiastically and outwardly at work when Obama won the election in 2008, because my elderly black clients (not all are of African descent) weren’t convinced that things had changed all that much since the lynchings in Birmingham in the earlier part of the last century.  But genocide still happens, and racism and hate-crimes still rock communities all over the world.  There’s beauty in the breakdown.  Or something.

September 11th, 2001 was a terrible day.  The truth of the matter though, is that I wasn’t there.  I wasn’t one of the hundreds of people jumping out of windows trying to escape certain doom.  I wasn’t the wife of a lost firefighter, or the daughter of a woman working on the fifitieth floor.  I wasn’t a student in the wrong place at the wrong time, and I wasn’t on those planes.  Those people are the people for whom this past week of remembrance was observed, and they are who I thought of and prayed for.  I’m just another American watching the rest of the world on TV.  I’m not picking up the pieces of a broken life.

So, I observed the tenth anniversary of the attacks in my own way – by living my life, which I’m so lucky to have, and by spending time with people I love.  My head may be below sea level at times, but I know what really matters, and it matters every day.

Against the Wind

August 27, 2011

Among the ten or so current ideas I have for blog posts, is the issue of early-onset Alzheimer’s Disease.  It’s a tricky topic, and an unpleasant one for many people who have “lost” family members to this awful disease.  The reason it’s coming up today, is because of a New York Times article I read yesterday.

Source for this image is http://www.thenewagenda.net

I’m not a “sports person,” but that doesn’t matter in this case, because of my knowledge and experience in this subject.  Pat Summitt, the women’s basketball coach at the University of Tennessee, was recently diagnosed, at the age of 59, with the early-onset form of Alzheimer’s.

59 seems young, doesn’t it?  Well, the youngest person ever observed displaying symptoms of early-onset Alzheimer’s Disease was 29.  Yikes.  Early-onset AD, particularly the familial variety of the disease, appears to be caused by a genetic defect on chromosome 14, which has been widely researched, and defects on two other chromosomes, which can all be passed on to offspring.  In fact, there is a 50% chance that the child of a person who has one of these genetic defects will also have the defect.  Even scarier, there is a 100% chance that one with any of the three defects will develop the rare form of AD. You can get tested for this if you want to, which could be helpful in deciding the future of your family.

Alzheimer’s is a tough disease for anyone, for their families in particular.  What’s tougher, though, about early onset (I’ll just call it EO from now on) is that the people who are diagnosed with it would have had, on average, about 30 more years to live, and have children my age and younger.  They still have so much left to do.  This means that in some cases, family members deny the possibility of their parents (mostly mom) having AD because “no one in the family had it.”  Medicine wasn’t as advanced though back in those days, and scientists didn’t even have a name for the disease, not to mention that it wasn’t uncommon for people to pass away before they began exhibiting symptoms.

A diagnosis of EO basically means that you have two or three years left of being remotely able to live your life the way you want, and sometimes a person doesn’t even have that long.  EO progresses faster than late-onset Alzheimer’s disease (my grandmother had LO for ten years before she forgot anyone’s name) which means that even though the brain has finished its functional life at some point, the body, which is a healthy 55-65 year old body, lives on.

There’s a reason we call it “the long goodbye.”  Only when a person has lost the ability to eat, or forgets how to walk (sometimes after many years) and has a fall, does their body begin to shut down.  In my experience, EO is very frustrating for family members in this way, and the saddest part of it all is that many people feel, after only two years sometimes, that their loved one is already gone, and then the waiting begins.

I read a book last year called “Still Alice.”  It was about a 50 year old Harvard professor (told mostly from her perspective) who was diagnosed with EO.  It goes through the process of her disease and, in my opinion, it does an amazing job of painting the EO picture. Toward the end of the book it is clear that the once-intellectually-driven linguistics professor has gotten to a point where she is happy – content – eating ice cream and listening to street musicians perform (it sounds pretty good to me too).

My bottom line here, if I didn’t already make a point, is that things are shifting.  Things are changing in our world, and the dementia population is growing and becoming younger.  What this has meant for me, as a music therapist, is that my music repertoire is shifting too.  While the people on units I work in have normally been between the ages of 79 and 94 (making the early 1950s the absolute latest years most of my clients know songs from, and making Let Me Call You Sweetheart (1910) the most requested song), in the past two years, the number of 55 to 70-something year olds has increased, so the music has changed.  Despite the terrible reason for the change, I must say that it makes my job a bit more challenging and I’ve enjoyed learning “new” tunes.

Some “more recent” songs that younger patients and residents (or their families) have suggested in the past few years are:

The Wind Beneath my Wings – Bette Midler

Sweet Caroline – Neil Diamond

You’ve Got a Friend – James Taylor

Blowin’ in the Wind – Bob Dylan

Fun, Fun, Fun – The Beach Boys

Blue Velvet – Bobby Vinton

Tie a Yellow Ribbon ‘Round the Old Oak Tree – Tony Orlando and Dawn

Yesterday – The Beatles

Unforgettable – Nat King Cole

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No matter how much I love the old songs, it gets a bit old listening to myself sing “Down By The Old Mill Stream” over and over again.  The more I get requests for more current songs by folks with EO, however, the more terrified I am that I’ll be one of those unfortunate souls whose cognitive skills leave them early, and who wants so much to request that my music therapist play “Roll to Me” by Del Amitri, but can’t find the words.