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.
“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.
August 12, 2012
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?
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?
January 21, 2012
Yesterday I was doing some documentation after my group on the psych unit and I overheard a couple of co-workers talking. They were discussing an incident that was recently in the local paper where a nurse at an area Assisted Living was caught stealing Vicodin and prns (emergency sedatives) from six elderly residents there. This is somewhat close to home because I work at that AL facility, in the same unit, and also because one of my co-workers talking about it was the whistle blower on the whole situation. Her aunt was one of the people being stolen from, and she was the person who got the ball rolling in the investigation, but only after at least six months of theft.
The sad thing is that this stuff happens all the time, everywhere. The things being stolen are usually more sentimentally valuable, such as wedding rings or other pieces of jewelry, but theft is a huge issue in elder care facilities, regardless of the item. I have a theory about this. Most of the care assistants and nurses in the facilities I work at are from different countries, speak very little english and aren’t paid well enough for the difficult jobs they do. If I put myself in their shoes, I can almost understand why things are getting stolen. In the words of Gloria from Modern Family, “it’s a doggie dog world” (dog-eat-dog world). In our world, when you don’t have a well-paying job and also have very little chance of improving your situation because of a gigantic language barrier, it’s every person for him or herself. You pay the bills however you can. Some people collect cans and bottles from neighbors’ recycling bins, some walk up and down busy intersections asking for money, and some steal. When someone steals from an elderly person, though, it’s hard to understand it even under the most dire of circumstances.
(Aside: The following question, like all of my questions is not meant to be rhetorical)
What is keeping administration from putting cameras in patients’ rooms and apartments?
Every elder care facility I have ever worked at has had issues with theft. If there’s something I’ve come to realize it’s that there will always be thieves, but do we have to let them to get away with it? If the cameras are protecting the residents (obviously family members would have to approve the camera actually recording something), isn’t that the only thing that matters? I asked this question to an executive director of an AL I used to work at once. Her reply was that if cameras are placed in rooms or apartments, then staff has to be notified. Why? If the cameras are kept a secret, won’t that be more effective in catching and then removing the people who are stealing? If I ran a facility, I would not want to have people who steal from the elderly working for me. On the other hand, by telling staff that there are cameras all over the place, are we saving people from themselves? Would people who would otherwise steal refrain from temptation because of their awareness of the cameras?
I think cameras seem like a win-win situation. If the cameras are there, and everyone knows it, even if they’re not recording anything most of the time, would that solve the problem? A financial director of a facility is bound to ask where the money to pay for the cameras is coming from, and that’s a good question. I don’t have the answer to that, but I do know that if my mom was in a facility years from now and her jewelry started to go missing, I’d be pretty ticked off. I’d probably want to buy a camera myself and catch the idiot who is taking my mom’s stuff.
Anyway, that’s close to what ended up happening in the real-life situation from the first paragraph. After months of noticing tylenol replacements and missing pills, the nursing director at this AL put a camera in my co-worker’s aunt’s room (with her permission, of course) and caught the 29 year-old nurse red-handed. This nurse simultaneously violated not only the law (what she had been doing is a felony), but did something morally and ethically despicable AND destroyed her career. I don’t wish anyone that kind of repercussion, but after months and months of stealing pills, it stopped being an error in judgement and started being a calculated thought process which deserves to be punished.
Wouldn’t it be nice if this problem could be prevented?
November 15, 2011
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?”
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!
November 14, 2011
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?
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
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.
November 9, 2011
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!!!
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?
October 27, 2011
“I don’t know why you say Goodbye, I say Hello.” There is not a more perfect lyric to describe my Wednesday group in the SNF.
In music therapy, for those of you who are not in my field, one of the most basic interventions used is the “Hello Song.” The use of the greeting song is to ease clients into a session, and to make everyone feel comfortable and welcomed. Everyone.
The following video was made for the benefit of MTs, students, and people looking for a different hello song to use, so if you choose to watch it and you don’t fit into those categories, bear with me 🙂
My Wednesday group at the SNF is a very difficult one to manage. There is a complex web of personality clashes, and some residents are set off by extremely inconsequential things. When a resident is aggravated by another group member, it’s never just left alone. People yell at each other, call each other names, talk about inappropriate topics at inappropriate times, and intentionally go against the grain in a very negative way. And this is baseline. I get very frustrated, because while I have no issues managing large groups and loads of dementia-related behaviors simultaneously, with this group, I am sometimes at a loss.
There haven’t been any significant issues since a name-calling episode a few months ago, but two residents (E., and C.) have continued, after months and months to say, “Good-bye,” instead of “Hello” during the hello song. They’re not doing it because they are confused about which end of the session we are at, they’re doing it to be funny, or difficult, or fresh. Whatever the reason, it’s not appropriate social behavior for our setting. There are people in my session with advanced dementia, who could be extremely confused by the change in that one word during the hello song. I leave room for each person to greet the group in their own way, so if they say, “bonjour,” I validate their response by repeating “bonjour” where I would normally repeat “hello,” as with any other greetings. I DO NOT validate clients’ responses when they are doing something that is intentionally counterproductive. It feeds into the behavior, and since these people are adults, I’m not interested in feeding into behavior that creates a negative energy in my session, and potentially disorients cognitively challenged individuals. If there’s a space for residents to talk about how they’re feeling, I ABSOLUTELY validate ANY emotions that people are feeling, be them anger, happiness, sadness or irritation, but this nonsense is different. It was funny at first, but after months of trying to get them to work with me, as two of the more “able” participants, I’m no longer amused.
Yesterday, B., a very sweet but somewhat confused woman took E’s silverware at breakfast. It was an accident (I’m sure most of us have taken someone’s silverware from time to time…) but E. was so angry about it, that she brought it up to my student prior to our group. She couldn’t let it go, and didn’t seem to believe that B’s slight was unintentional. During the greeting song, after she said “good-bye,” in place of Hello when she herself was addressed (said with flat affect, shaking her head, and lacking eye contact) during the greeting, she also said “GOOD-BYE,” very loudly, when B. was being welcomed by my student therapist. It seemed like she was trying to make a point by being particularly harsh when directing her “good-bye’ toward B (she was looking over at B while she said that) and then saying “Hello” very enthusiastically when a woman she is friends with was addressed. Nonsense. Are we in third grade? Anyway, these are the sorts of complicated group dynamics that aren’t even appropriate to bring up during a session. Picture it…
“Now, ladies…let’s all cooperate and be nice to each other while we’re in music therapy.” Yeah, right.
I have resolved to speak individually with E. next week (and the others who are participating in “opposite day”) prior to the group and ask them to please cooperate for the sake of the other residents. I chose not to work with children for a reason, and that reason doesn’t have anything to do with age.
It’s maturity. Or so I thought…