[This was something I wrote in May of 2018 but apparently hid it from myself at the time, perhaps for reasons that will become obvious.]
Schrödinger's Cat is a thought experiment, sometimes described as a paradox, devised by Austrian physicist Erwin Schrödinger in 1935. In the simplest terms, it illustrates how, if there are two possible states of being (e.g., dead or alive), and an observer can’t actually observe which one is true (e.g., because the cat is in a sealed box), then two different realities exist simultaneously (i.e., dead cat and alive cat).
Besides being an interesting mental exercise – and something to talk about when you want to sound smart – I’ve discovered it can also be a great source of peace.
A few days ago I had a biopsy taken from a small itchy spot on my back. The results came back as squamous cell carcinoma - skin cancer. I had this on my arm many years ago and back then the dermatologist just cut it out, stitched me up, and sent me on my way. No big deal. But this time – either because it’s more serious or because a different dermatologist is more conservative – I was referred to a surgical oncologist and have spent this week talking to doctors, nurses, physician’s assistants, medical technicians, appointment schedulers and insurance providers. The current plan is for me to have surgery in a couple of days to remove the offending cells, but not before multiple tests have been conducted to see if the cancer has spread to or from other parts of my body. In other words, they’re trying to determine if this time it IS a big deal.
Naturally, the word “cancer” used in relation to me, personally, gets my attention. And while I think I have a pretty good attitude about it all, it would take someone a lot more Zen than I not to feel a little freaked out and anxious. Especially as I go through this battery of unfamiliar tests.
Today I had a combination CAT scan/PET scan. You can look up what that involves, but the best way I can describe it is to say it’s like having a member of the Star Trek medical team check you out head to toe with a Tricorder. Basically, they’re looking at every nook and cranny in every one of my organs to see if there’s anything growing in me that shouldn’t be. Tomorrow I’ll learn the results, and depending on what they are, it could be life changing.
Before and during the scan, I was terribly nervous. I had to keep reminding myself to breathe and used multiple techniques to try to keep my mind off the implications - without great success, I might add.
But tonight, with the test complete and the results likely sitting on the surgeon’s desk in a dark office somewhere, I feel a great sense of peace. Like Schrödinger's Cat, I’m existing in two realities: I am both seriously ill and perfectly healthy. And at this moment there is no way for me to know which. There’s also absolutely nothing I can or need to do about it…except wait until tomorrow when we open the box.
Addendum: The scans showed that except for the already identified squamous cells - which were weirdly wrapped around a subcutaneous nerve - no cancer was found anywhere in my body. I had day surgery to remove the squamous cells and all was and continues to be well. So I guess the cat really was alive!]
[I wrote the following essay sometime last year, well before Covid 19 changed all of our lives. I haven't been able to visit any eldercare facilities and sing with my sweet dementia friends in over six months. And the whole idea of being sick, and especially, being healthy, has taken on a much deeper meaning for me. But I decided to post this anyway if only to give myself a look back at the good old days when sentiments like mine could perhaps seem novel and vaguely humorous. So with apologies to anyone who may be offended, I offer my pre-pandemic musings.]
I love being sick. There. I said it. Now, let me immediately qualify that by saying I’m not talking about being “sick” sick. I have nothing but compassion for people who are really, truly sick with painful, debilitating, scary, and life- or quality of life-threatening illnesses. And I’m enormously grateful that I’m not – and never have been – that kind of sick. I’m talking about this cold I have right now.
It’s just a cold. But it’s a bad cold. The worst in my admittedly failing memory. I’ve been sneezing, blowing, and coughing up all kinds of yukky stuff. My head hurts, I ache, I’m weak and I just generally feel like crap. And I love it.
I have loved being sick – and again I stress, not really sick – since I was a child. And small wonder. Being sick in our house was kind of like being a rock star! You got to lie around, watch TV during the day, eat in bed - granted not everything you wanted, but who doesn’t love chicken noodle soup and saltine crackers served on a tray? But the two best things about being sick back then were that you got lots of attention and you didn’t have to go to school.
And those are still the two best things. All I have to do is answer the phone or call someone and the first thing I hear is, “You sound terrible. Are you sick???” To which I can bravely reply, “Oh, yeah. I have a bad cold, but it’s no big deal. I sound worse than I feel.” Of course, they don’t buy that for a minute! Of course, I feel awful. And even if I sound worse than I feel, they just said I sound terrible, so I must feel pretty darn bad! Plus, I get points for being tough and not being a whiner. It’s a no-lose situation.
And then there’s the no-school part. As it happens, my job is singing to dementia patients in nursing homes. So there is no way I could go to work. I mean, first of all, when you have a cold, your throat and vocal cords are all inflamed and out of whack, so it’s hard to talk, much less sing on key. And then, no person of good conscience would waltz into a nursing home full of very old and vulnerable people carrying the kind of germs that are an inconvenience for people like me but could be life-threatening for the dear residents I spend time with. So not going to work isn’t just a wise precaution, it’s a genuine act of love and compassion.
Again, don’t get me wrong. I love my job! Getting to sing and have very personal, intimate interactions with people who are in the most difficult and defenseless time of their lives is precious and I wouldn’t trade it for anything. But still, a job is a job. And having a really good and – some might say, honorable – reason for not going to work is kind of a gift.
But besides getting attention and getting to lie around the house guilt-free, there’s another reason. And this is the one that is the most difficult to admit because it could sound like a slap in the face to those aforementioned really, truly sick people: I like the way being sick feels.
I like the novelty of feeling out of my usual state. I like not sounding like myself. I even like the headaches and achy joints and coughing fits. Of course, this is largely because I know it will pass and I’ll get my old healthy body back in a week or so.
And maybe that’s why I enjoy it so much. Because it reminds me of the gift I’ve been given of a mostly-healthy, mostly-strong body that responds to my unthinking and unnoticed commands to breathe, sleep, speak or sing without missing a beat. I like being sick because I’m mostly not. And being sick allows me to appreciate – if only for a short time - the incredible gift of good health that I’ve been given.
But now if you’ll excuse me, I need to go blow my nose.
One of my dementia clients is very, very sad. Alice is 100 years old. She’s not quite five feet tall, and has always been a very active, energetic person. Over the years I’ve been visiting with her, she’s told me repeatedly that she weighed just 2 ½ pounds when she was born, surviving against all odds. She went to work immediately after graduating from high school, and moved from the small town where she was born to the “big city” of Austin as soon as she could. She worked for 26 years at the same bank, holding a variety of jobs, from teller to head of the safe deposit department. Her description of trying to control the gigantic vault door, especially given her diminutive stature, is both vivid and delightfully amusing.
She married the love of her life and best friend, and together they raised a fine son who calls her every night to check in and make sure she’s okay. She and her husband spent wonderful times together camping and fishing at their little cabin on the lake, and later driving all over the country in their motor home. She told me about the time she was forced to surrender a precious bag of homegrown tomatoes from a roadside stand when they crossed a state line that didn’t allow importation of produce. She “learned my lesson and hid my tomatoes after that!” She has fond and happy memories of those times, and dearly misses her husband who passed away several years ago.
Alice’s hobbies included knitting, crocheting, playing cards and reading, among other things. Later in life she joined a women’s tap dancing troupe, and “just loved to dance!” She also loves to walk. Supported by her walker, she parades up and down the hallway of her residence, and if someone is with her, she can go outside to stroll around the garden “and listen to the birds.”
But sadly, in addition to dementia and the hearing loss that’s typical of people her age, Alice has also lost virtually all of her vision. Consequently, most of the activities she has always enjoyed are no longer available to her. And her advanced dementia pretty much rules out learning anything new. (Somewhat ironically, the activity I can offer her – music – is not something that has much appeal for her.)
So Alice is bored. This vibrant, pint-sized powerhouse is horribly, painfully bored, which has put her in a pretty dark state of mind that makes it hard for her even to enjoy conversations that used to delight her. She receives excellent care in a wonderful facility, and while I’m not privy to her medical treatment, I feel sure that she’s being given whatever pharmaceutical intervention is appropriate. But that doesn’t relieve her boredom. Lately her refrain is, “I wish there was something I could do!”
Therein lies the rub. And it’s something I’m seeing more, the deeper I move into the world of dementia- and elder-care. That is, people who have been “doing” all their lives, can no longer “do”. Pretty much all that’s left is to “be” which, if you’ve ever really tried it, isn’t as easy as it sounds. (To read about my own challenges with this, check out my post from a few years back, Do-Be-Do-Be-Do.)
But as I struggle to offer something meaningful to Alice and people like her, I take comfort in the advice of a dear friend who is a professional therapist and also one of the wisest people I’ve ever known: If all she can do is to “be”, then “be” with her. So I “be” with Alice in her boredom, in her loss, in her sadness. Because sometimes “being” is really all anyone can do.
Addendum (Aug. 4, 2016): I just came back from visiting with Alice and she was in the best mood! Happier than she’s been in about six weeks! She was chatty, laughing, and very glad to spend time with me, sharing her favorite memories. I don’t know if some meds kicked in or what, but I am thrilled and had to share the good news!
Addendum (Sept. 12, 2016): Days after the addendum above, Alice slipped back into despair, sobbing almost continuously and saying she wanted to die and "get out of here". During our weekly visits, all I could do was hold her hand, remind her she was loved, and continue to "be" with her. This morning at midnight her prayers were answered and she passed away. I hope she has gone to join her beloved husband and continue their adventures! I will miss her terribly, but my heart is soaring at her release.
This may be disturbing. When I tell you Ted’s story, you might think, ‘Oh, that’s just so sad and tragic, I don’t want to hear about it.’ To which my response is, ‘Get over it.’ Yes, it’s sad and tragic when people lose their memories…or their minds, or their sight, or their mobility. But it’s a reality of life. So let’s talk about how to handle it, and how to help.
Ted is one of my favorite people. He’s bright, funny, and very, very smart. He also happens to have dementia. I’ve mentioned before that my Musical Memories sessions are “musical conversations” and that some people are more interested in the conversation part. Well, that’s Ted. Not that he doesn’t occasionally enjoy bringing his full baritone to a song or two, but mostly he likes the give and take of a good verbal exchange. And he likes to think.
I realized early on that although he rarely seems to know where he is – sometimes we’re on a train, sometimes in a hotel, once we were in some sort of swamp surrounded by boats – he knows how to evaluate, analyze and communicate. It’s what I’m sure made him highly successful in his military and industry careers; it’s something he’s proud of and clearly gives him great pleasure.
Like many dementia patients, Ted can no longer do most of the things he enjoys. He can’t play golf or bowl because he’s unsteady on his feet and can’t see well. He can’t read or watch a movie because he can’t follow and retain the storyline. And believe me, you will not see Ted at bingo or arts and crafts. He’s also a bit of an introvert, so he doesn’t seem to seek out groups of people to socialize. But he likes one-on-one conversations that allow him to stretch and exercise his considerable brainpower, despite the fact that what he’s discussing may not, in fact, be “real”.
So when we get together, I just ask him what’s going on. He’ll immediately start describing what he believes to be his current reality. I never try to convince him that, no, we aren’t on a train. Instead, I simply follow his train of thought, as it were, and let him lead us in an intelligent conversation about how we’ll be able to get off at the right stop and be sure we get back on again when we’re ready to leave. In the “swamp”, Ted had some fascinating insights about what kinds of crops grow best in that environment and why. These aren’t memories; this is real-time thinking. And for Ted, it’s fun.
I should note that I always make sure he isn’t feeling frightened. And if he seems to be spiraling down into a dark or depressed place, I’ll do some redirecting to help break that descent. (This is where a songs or two can come in handy.) One time he was very worried that his military supervisors wouldn’t be able to locate him because all his “paperwork” lists his name as Edward, but he’s been introducing himself as Ted. So I took out a pad of paper and very officiously wrote down his full name and birth date, and assured him I would see that the correct information got to the proper authorities. And then he was fine.
Ted is a thinking man for whom intelligent, thoughtful conversation is a favorite pastime – one of the few that are still available to him.
So here’s my thought: If you know or love someone with dementia, someone who is a thinker and has always enjoyed intelligent conversation, engage them. Let them talk and follow their lead. Converse, but don’t challenge or correct their perceptions of reality. Banter and joke with them. Ask questions, but don’t dig for facts they may not remember, like how old they are or how many children they have. They may not recall the details of their lives, but the person you know is still there, thinking.
And if you are a thinker and enjoy intelligent conversation, you might think about sharing this with your loved ones now. Because you never know.
As I was leaving Beverly, one of my favorite dementia patients, I told her I was going to the beach for my birthday, and wouldn’t be coming next week. Seeing her slight frown, I said, “But I’ll bring you a seashell.” So a few days later I found myself at the shore, searching for shells – for Beverly and for other dementia people I visit and sing with every week. Seeing a particular shell, I'd think, Beverly would like those colors, or, Mary might enjoy how this one feels. And I went home with a bag of shells.
The first person I gave a shell to was Barbara, who has become a dear friend and feels almost like a co-conspirator because of her quick wit and delightfully quirky and mischievous personality. (You would probably never suspect she had dementia unless you spent a lot of time with her.) So it didn’t surprise me when, as I gave her the shell and told her I’d picked it up for her at the beach, she looked at me with mock outrage and said, “I can’t believe you went to the beach and didn’t take me with you!” Turns out she is – as I somehow suspected – a beach person like me. As she lovingly stroked and examined the shell, she told me about her childhood in Pennsylvania where months of each year were spent at the beach. And about later, waiting impatiently for her own children to be old enough to take to the beach, because she so wanted to give them that experience.
The next person I happened to see was Jay. He looked thoughtfully at his shell and started reminiscing about taking his family to the beach in California, but then segued into his time on an aircraft carrier as a member of the US Air Force during WWII. He remembered for me the wrenching sound of the misaligned screw propeller on the repurposed freighter that had been turned into a carrier. He said, “That sound about drove us crazy, but those Navy guys didn’t pay it any mind.” After a few minutes reflection on that he said, “Why don’t you sing to me?” That surprised me a little. He doesn’t always remember that I’m “the singing lady”, so I took that to mean he was ready to stop remembering certain things. Or maybe that he just wanted to remember them in a more comforting way. Either way, he held onto his shell as we sang some of his favorite songs together.
Mary, who doesn’t really speak, simply rubbed and stroked the shell I put in her hand as she looked into my eyes and smiled while I sang beach songs. Alice can’t really see anymore, but was so pleased that I had brought her a gift! She squeezed my hand and thanked me as profusely as if I’d given her a diamond tiara. Phyllis, who mostly just nods, looked at her shell closely, turning it over and over in her hand, smiled, and then gestured for me to place it on the windowsill with her other “treasures”.
And finally there was Oliver, who turned 100 years old last September, and whom I’ve been singing with – and writing about – for several years. I told him from the start that I wasn't sure if he’d like the seashell I’d brought him, since I know he is “a lake man”. He frequently talks about the house he built on Lake Travis. He clearly loves it more than anyplace on earth. (When I asked him once where he’d be if he could be anywhere in the world, he talked about the lake house and said, “There couldn’t be anyplace better.”) He can’t understand why anyone would want to be in saltwater when you can be in lake water, and he laughed when I told him we were having our first fight - lake vs. beach. But he held the shell up to his ear to see if he could hear the ocean. After listening for a moment, he said, “I can’t hear the ocean. But what I hear is, ‘I love you. I love you.’”
Oliver's going deaf, but there's nothing wrong with his hearing. Because I didn't realize it until he said it, but that's what every one of those seashells is saying.
As I mentioned in my last post, I recently lost two of my favorite Musical Memories clients last week. They were both fun and lovely women who allowed me into their lives during what turned out to be their final days on earth, for which I’ll be forever grateful.
If you haven’t already, please read Call Me Eve! to learn about dear Evelyn. But now let me tell you about June. I’ll warn you, though. This one gets a little spooky!
June was a bright and brilliant person with a genuinely charismatic personality. I’m sure that came in handy because, as she told me, she and her husband had been very involved in local, state and national politics. Since it’s important to me to protect the privacy of my clients and their families, I won’t be specific, but I was impressed to learn that her husband had been elected to a high state office and was later subject to a presidential appointment on the national level. And June herself worked in state government in various capacities.
She was also a proud Baylor University graduate, who taught me the Baylor Alma Mater – That Good Old Baylor Line – which is sung to the tune of In the Good Old Summertime, and which we sang at the end of every visit, complete with the “Sic ‘em, Bears!” sign at the end.
Like Eve, June’s favorite songs were traditional hymns. She loved Amazing Grace, Into the Garden and Blessed Assurance, which I sang for her frequently. But one song I didn’t know – and she requested several times – was The Old Rugged Cross. So I was excited the day I had finally learned it and planned to sing it for her. But alas, she was in the hospital that day. For the next few weeks, I looked forward to surprising her with it when she got out. I was heartbroken when I got the call that she had passed away unexpectedly. She would never hear me sing her favorite hymn.
This is where it gets spooky. A couple of days later I was singing to Alice who lived a few rooms down from June. Alice also loves hymns and was happy to sing along with me to The Old Rugged Cross. I try to be very present with my elder friends, but at that moment I have to admit that I couldn’t stop thinking about June.
So imagine how I felt when, as we finished singing the song, Alice stared past me into the empty room and said, “There’s someone behind you.”
Now, Alice tends to have what some people would call “hallucinations”. She “sees” her departed family members often. In fact, I wrote about her family “visits” last year in A Family Reunion. But I wanted to be sure she wasn’t feeling frightened, so I checked with her and she assured me that the person behind me seemed nice. And then she was gone.
As I’ve said before, I don’t know how any of this life, death, and after-life stuff works, so I won’t swear that June was there, listening to The Old Rugged Cross. All I do know is that I will never sing or hear that song without thinking of her, and that makes me happy.
Here’s an update on my singing with elders and dementia patients: For those who care about my ability to make a (modest) living doing what I love, I’m happy to report that I’m now working three days a week, so have achieved a level of “predictable income” which would make my dear departed mentor Haven very relieved. I’m also doing what I love which makes me – and my spiritual director Jean – very happy as well.
But on a more emotional level, this has been a tough week. I just lost two very dear friends. (An unexpected side-effect of this “job” is that people I grow close to die at a frequent, albeit somewhat predictable, rate.) And within a week’s time, Eve and June passed away, so I offer my reflections.
Eve was a fun, funny, warm, and welcoming woman who suffered from dementia apparently brought on by Parkinson’s disease. (I don’t know too much about her back story which I usually learn from obituaries, because her family chose something extremely brief.) So all I know is from our interactions starting about three months ago when she welcomed me into her room as a total stranger who had come to sing.
We bonded quickly, in part because we like the same songs: 30’s & 40’s pop, as well as a variety of hymns. Eve knew the words to virtually any song I suggested, but the hymns were her favorites which seems to be true for many of my elder friends.
But she was also quick with a joke or funny story. When I asked her permission to address her by her first name of Evelyn, she said, “Call me Evelyn, call me Eve, just don’t call me late for supper!” When I asked where she was born, she promptly replied, “In a taxicab,” and proceeded to tell me the story of her mother’s harrowing cab ride through the streets of Chicago where Eve was unexpectedly born. She also took some delight in relating her encounter with a doctor at some point in her life who – like me – asked her where she'd been born. When she replied with her taxicab answer, she was tickled when the doctor replied, “No kidding? So was I!” I mean, really, what are the odds?
In late February, a few weeks before she died, I stopped in to see Eve as usual and she was unusually delighted. She said, “Today is Easter!” I’ve learned with dementia patients that it's best to enter their reality, so we spent our time together talking about Easter – how we celebrate, what food we cook and eat, and of course, what songs we sing. And together we sang our favorite Easter hymns. The next few weeks, every time we got together, she would mention, “I saw you on Easter,” to which I would always agree.
Eve was one of those people I sing with for whom death did not seem imminent – at least to me – so when I got the notification that she had died rather suddenly, I was very surprised and saddened. But of course, I was happy for her that she had been released from her limited physical state and had gone on to whatever is next.
And I can assure you that on Easter Sunday 2016, I will be singing to and with my dear departed friend Eve…or Evelyn…but I will not call her late for Easter supper!
I’ll tell you about my other dear departed friend in my next post. But **spoiler alert** if you happen to hear someone singing The Old Rugged Cross, it’s probably June.
I work too hard. I know that may be difficult for some people to believe. After all, I don’t have a “real job”. I have always leaned toward comfort and ease, as opposed to seeking out challenges and pushing the envelope. I frequently describe myself as “lazy” – sometimes in a disparaging way, but often as a point of honor, trying to demonstrate a level of self-acceptance despite this obvious character flaw.
But recently I was cautioning a friend who has been doing some extremely hard and heavy emotional lifting to be sure to add some fun, play and downtime in her otherwise stressful days. I actually told her that I saw it as a “red flag” in her mental health. Then it occurred to me – not for the first time – that often we see in others the traits or patterns we most need to address in ourselves.
And it hit me that for years, the people who know me best have been saying things like, “You sure do work hard.” or “Slow down. Take a break. Relax.” or “You work harder than anyone I know.” But I’ve never believed it. I think one reason is that while a lot of my hard work has been related to employment activities, it certainly hasn’t done much to generate financial security, and isn’t that how hard work is measured? (Actually, it probably has more to do with the fact that “business” is not my forte, but I digress.)
A great deal of my hard work has been physical and in the areas of home repair, maintenance and landscaping. And I work very hard at relationships, personal development, and spiritual growth. But whatever the arena, it seems my work pattern involves putting complete focus on the work at hand, with plans to relax or play "soon" or "later" or when the work is "finished". (With physical work, I’ve actually driven myself to literal collapse because I wouldn’t stop even to take a quick break or get a drink of water.)
So I should just learn to chill out, right? It’s not so easy. The other day, for example, I had nothing on my calendar. Of course, like everyone, I have a list of things I "should" do - mop the floors, clean out the refrigerator, organize files, not to mention overdue yardwork, bookkeeping, and the ever-present "do something to increase my income". The list is unending. But this morning my Angel Card said "Play".
Now, if you’re not familiar with Angel Cards, they come in a little deck of 20 or 30, each containing the drawing of an angel and a word, like Play, Grace, Understanding, Love, Compassion. They were originally part of a New Age game called Transformation, but I use them as a reminder of important concepts. I pick one at random each morning to discover my gift or aspiration for the day.
Typically, I get a different card each day, but that particular week, no matter how much I shuffled the deck, I kept getting Play every morning. So, finally paying attention to what the Universe was telling me, I decided to at least think about going to the movies instead of working on my To Do List. But it was incredibly hard even to consider it! Not when I had so much work I should be doing. It felt wrong, bad, irresponsible.
Then I thought, For God's sake! I'm 62 years old, it's going to be a brutally hot day, many people would love to have the option of not working today, and here I am, with no boss, no looming deadlines, and no real commitments for the day, and I’m struggling with the idea of giving myself a couple of hours off in an air conditioned movie theater! How crazy is that?
Now, this is the point where I wish I could tell you that I saw the light and sat in the dark, watching an amazing and entertaining film that made me laugh and energized or uplifted me in some way. But sadly, no. I couldn’t make myself do it. I stayed home doing paperwork and paying bills (which could have waited), doing laundry (which wasn’t going anywhere) and stressing over how to generate more income (which didn't help anything).
I’m not giving up, though. I’ll keep trying to stop trying so hard. But I thought it was time to finally say it: My name is Pat, and I’m a workaholic.
Let me start by saying that I know that some people are going to read this and feel sad, depressed and/or scared. To those people I’ll just say, I’m sorry you don’t see this the way I do.
Today I met with one of my favorite dementia patients. Alice is a lovely, warm and rather lonely woman who is always happy to have me visit and sing with her. She’s one of my “clients” (though they quickly become so much more than the word implies) who always meets me for the first time. She’s very open to having me sing, but demurely professes not to be able to sing herself. However, in less than one phrase or measure of whatever song I choose, Alice is belting it out with joy and enthusiasm, rarely forgetting a single word. And if asked, she’ll reluctantly admit that she had a lead role in her church choir, and frequently sang with her large family.
Alice loves to talk about her family. She has eight brothers and one sister, and her parents met at the University of Texas or Texas State, depending on the day. Her father is a farmer and something of a math whiz who helps neighbors with their bookkeeping and financial matters because his generous nature is commensurate with his business acumen. He is a quiet, somewhat solitary man, and he has a very warm and loving relationship with Alice’s mother, who plays the piano and has beautiful blue eyes.
Alice talks about them often. But more than anything, she talks about her eight brothers, whom she adores. She was born on the birthday of one of them – Roy – who has a beautiful voice and always calls her his “birthday present”. I put all that in the present tense, because that’s how Alice describes her family, even though I suspect all or most of them passed away years ago. But to her, they are permanently present in her life.
And today she couldn't wait to tell me that “My brother is here today!” I asked if it was Roy (who I can tell is her favorite) but no, it was Clifford, who according to Alice is 18 years old. Clifford is “so dang smart”, as are all the members of her family, she says. He just finished high school and loves to work on cars. He’s very mechanical, like her father. I remarked on how wonderful it was to get a visit from her brother, and asked her if she’d had a chance to see anyone else. She excitedly told me that she had gone to Lemesa last Sunday to visit two of her brothers who live there. (Keep in mind, Alice is more or less bedridden, and probably hasn’t left her nursing facility in years.) She let me know that her brother Dan and his wife Irene had gone to Lubbock because one of their children was in the hospital, but the baby seems to be doing well, so that’s good. She said that Roy will be here this weekend and her sister Elizabeth – who teaches at “the university up there” and has lost a lot of weight recently; her hair always looks good – will be here soon. She warned me that her brother Buddy may try to flirt with me if I come to the house for breakfast, but not to worry because he doesn’t flirt too much. She wishes that her brothers would tell her more about what’s going on in their lives, but they’re quiet, like her father, and she sometimes has to drag things out of them. She said that it’s hard for her to know what’s going at home these days, since she’s away at school. But she enthusiastically shared all the family news: Her mother went and got her picture made, but no one knows why; Glenn has a girlfriend now; Maurice is busy as always; and lots more.
As I said, I know some people will find it sad that an 80-90 year old woman doesn’t have her exact geographic and temporal coordinates straight. But, today Alice was filled with joy and she had a great day with her family! And I was lucky enough to be there for the family reunion.
When I talk about my Musical Memories service where I sing to/with dementia patients, I refer to the sessions as “musical conversations”. Lately I’ve been working with a few people who are definitely more interested in the conversation part.
One of the most poignant conversations took place recently at a memory care center while I was making my rounds to visit some of my “regulars”. As I went from room to room, I kept seeing a woman in the hallway who I first assumed was a family member visiting one of the residents. But I noticed she kept stopping to check on the staff as they were going about their tasks, asking what they were doing and whether they needed help. It finally occurred to me that she was, in fact, engaging in the fairly common dementia behavior of “roaming”.
She seemed a bit distressed, so I approached her and asked if she might like to come sit with me on the couch while I sang. She very politely told me that I was welcome to do so, but that she simply could not join me. So I said I’d just walk along with her for a while. She seemed very agitated and concerned about what was going on around her and kept talking about how much she’d like to relax but couldn’t. Then I realized what was going on. In her world, there was some big event or party or meeting that was going to happen, and she was completely and entirely responsible for all of it.
I finally convinced her to sit down with me for a minute, and started pointing out what was going on around us, but in terms I thought might fit her reality. “See, that woman over there is vacuuming, so that’s taken care of.” She heaved a small sigh of relief. When she gave a worried look toward other staff members going about their routine work, I said, “Looks like they’ve got all that under control.” When she asked if I thought they would do it right, I said, “Oh, yes, and besides, it will help them build confidence if you let them do it themselves”. She seemed to think that was a fine idea. She kept talking about how she would love to not have to “do it all” and just stop for a bit, but obviously that wasn’t an option. That’s when I said, “I think you and I should just put our feet up and relax for a bit. After all, you’ve already done so much.” This is where she got a sweet, shy little smile and said, “Oh, I haven’t really done that much”. To which I replied, “You’re just being modest. Everyone knows how much you’ve done. And everything’s under control, so now you can just relax.” That seemed to please her very much, and she was able to sit and just visit with me happily for quite a while.
I love this story because it demonstrates something I’m learning about people with dementia. And that is, though their “realities” might be different, the common thread is that they seem to want to know two things: 1) That everything is okay; and 2) That there’s nothing they need to do. I think it’s a matter of feeling safe and believing that things are as they should be and under control, probably because they feel so confused and out of control themselves. And it must be a relief to hear that no one is expecting them to perform or solve problems, probably because their confusion makes that seem like an absolutely impossible demand. So what I try to do – whether it’s through music or through actual conversation – is enter their prevailing reality as best I can, and assure them that they’ve done enough and now it’s time to put their feet up and relax. And even if I'm not singing, I get the feeling that's music to their ears.