I had never heard Mom sing Down in the Valley. Ever. Until a couple of years after she was diagnosed with Alzheimer disease. Then she (we) sang it every day, sometimes five or six times a day, until just before she died.
“Why don’t we sing a song Mom?” I would say when things were getting a bit out of hand, when either she or I was feeling stressed or angry or sad, or when I had run out of other things to do to keep us both occupied.
“Okay,” she would respond.
“What do want to sing Mom?” I always asked before I made any suggestions of my own. It gave her a modicum of control as her world was spinning out of it.
“How about Down in the Valley?” She would almost always reply — It was her go to.
Mom had a beautiful voice. She knew all the words. I fell short on both counts, at least at the beginning. I learned the words eventually–to Down in the Valley and dozens of other tunes– but my voice would never match hers. Ever.
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I can’t carry a tune in a bucket. But Mom had a lovely voice, and she knew hundreds of songs, a few of which I learned during our last five years together. I had never heard The Tennessee Waltz before Eric played it in one our healing music sessions, which I started with Mom in November 2013; The Tennessee Waltz quickly became one of my favourites. The 1950 Patti Page mega hit has been covered by some of the world’s most renowned female singers including Connie Francis, Emmylou Harris, Anne Murray, and Bonnie Rait and Norah Jones (see below).
Here’s Mom singing it with Eric and I on January 25, 2014:
Connie Francis (1959):
Patsy Cline (year unknown):
Emmylou Harris (1981):
Anne Murray (year unknown):
Bonnie Rait and Norah Jones (2007):
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I didn’t know that Mother’s Day 2016 would be the last one Mom and I would spend together.
That morning, to honour her, I had led the service at the Universalist Unitarian Church in the village; it included the telling of a short story for the children and young at heart: Pookie, an Ivy Wallace tale about the winged rabbit who didn’t belong. Everyone loved it.
That afternoon, I went to see Mom at the LTCF.* I rescued her, as I usually did on my daily visits, from a recliner in the second-floor sunroom, and wheeled her downstairs. At the time, Mom was in what many would call the “later stages” of Alzheimer disease. Many would have also thought she was “no longer there.” I knew better.
Her decline had been exacerbated by the antipsychotics she had been inappropriately prescribed, and was still being given despite my three-year-long battle to have them stopped. Because of the immediate as well as the cumulative side effects of the drugs, as well as the ways in which she was being physically restrained, she was sometimes unable to stand, let alone walk. She would also sometimes “list” to one side or the other. On Sunday, May 8, 2016, she leaned decidedly to the right. I knew from experience there was no point trying to straighten her; her drugged body would simply not comply, and after being righted would slump right back to where it had been.
Her aphasia ranged from moderate to severe. Mostly she conversed through repetition. Nevertheless, she still loved being social; she mirrored, repeated, and tapped or clapped to engage with others. These were not symptoms of Alzheimer’s; rather, they were the communication tools she had at her disposal. Sometimes she was clear and articulate; occasionally, her “intuitive clairvoyance shone through and from time to time she surprised me with statements of deep wisdom and understanding.
Together we got her settled on the sofa in the drawing room. Here’s part of what that sounded like (about two minutes long):
Once we were comfortable, I told Mom about sharing Pookie’s story in church. Of course she didn’t remember Pookie, or the fact that she had read the story to me hundreds of times when I was a little girl. But I knew she would be as captivated by the magical tale as I had been then. So for the first time, I told Mom Pookie’s story, which has many parallels to my own life.
All of this was rich in meaning, love and magic, and is/was such a gift for both of us. Equally important is what the hearing of Pookie’s story elicited in Mom: joy, wonder, worry, curiosity, empathy, compassion, concern, love, laughter, excitement, amusement, and more.
Her response was a clear demonstration that despite the disease, the drugs, and the challenges she faced every day, Mom’s spirit, humanity and capacity for emotion were still intact. It shows that the arts (music, singing, dancing, drawing, painting, writing, and others) should be integral care components for individuals who live with dementia.
When I got to part of Pookie dancing on top of a toadstool, Mom laughed spontaneously for the first time in months—”mask-like face” and lack of expressiveness being among the many side effects of the medication she was being given. I believe storytelling is almost on par with music in terms of its potential to engage people who live with dementia, just as it is a meaningful way to connect with almost anyone at any stage of life.
This is me telling Mom Pookie’s story on Mother’s Day 2016 (a bit of background noise makes it a little hard to understand in a couple of places, so I’ve included a transcript under the audio clip for clarity; but to truly get a sense of the engagement you really must listen to the audio, which is about eight minutes long):
Transcript of the telling of the story of Pookie
Pookie was an amazing little rabbit but, and he couldn’t sleep at night. Oh dear. He wanted to sleep all day even through mealtimes. Oh oh oh oh oh, well that was fine. Yeah, so what happened was when it was time to put all the little bunnies to bed Pookie was up and bouncing around and hopping and ready to roll and that used to keep ‘cause all the little rabbits, all the babies slept in one bed. Oh my goodness, so. So all is bouncing around kept up Pookie’s brothers and sisters so they put him in a little bed all by himself. Oh dear.
Yeah, but that wasn’t the worst of it Mom. No. No, and the mother would say to little Pookie: “Oh Pookie,” she’d say, “you’re more trouble than Swivelkins and Twinkle Toes and Flopsy and Mopsy and Bobasina and Tomasina and little Wee One all combined!” Oh gosh.
Yeah. Isn’t that cute eh? Yeah, and even that wasn’t the worst of it. The thing was is that Pookie had wings – imagine wings. Imagine wings. A rabbit with wings, which he couldn’t fly with them. Oh dear. They were just little. They weren’t properly formed you know. Oh dear. They would always get in the way when Pookie’s mother tried to dress Pookie she tried rolling up his little wings and putting ribbons on them, but then the ribbons would fall off, and she couldn’t get the sweaters on and it was a real problem. Oh gee.
Yeah. So anyway one night Pookie was awake as usual and he decided to go out into the forest and explore and he came across a party of fairies and elves and goblins and all kinds of nighttime folk that come out in the forest at night. Oh my goodness. They were playing violins and tambourines and drums and all kinds of music, fairy music and they were all dancing round and round. So Pookie hopped up on a toadstool and started to dance woo hoo. (Mom laughs.) Oh dear, the land was was no no no he didn’t want to be be be be be. He didn’t want to be on his own. No. He wanted to be part of the gang.Yeah.
He wanted to be in the crew. So there he was dancing on top of the toadstool woo hoo like that. No no no no isn’t that funny? Yeah, and then again and boom! He fell right on his ass on the forest floor. No, isn’t that funny? And when he fell down he happened to fall beside two little goblins and they said, and he told them some of his story and then they said “well Pookie you should go off and seek your fortune.” Oh oh oh, and he didn’t want to do that eh?
Well first of all he didn’t know what a fortune was. Hm hmmmm. And second of all he really didn’t want to leave his family and his four brothers and three sisters and his mother and father but he was feeling like he really didn’t belong there, you know he was different from all the other rabbits. Yeah, oh yeah. So he packed a little hobo bag and in it he put a half a lettuce and an apple and some walnuts and off he went the next night No. To seek his fortune. Oh no. Yeah. So he travelled through the forest and he met all kinds of people. All kinds of, you know, toads and frogs and squirrels and owls and some helped him and some didn’t. Yeah.
One night, one day actually, he was sleeping under a bush and somebody took all his food – his half a lettuce and is his walnuts and— So what what what he didn’t do? Well he kept going and it was just on the edge of winter Mom, and it was getting very cold and so a big snowstorm came and Pookie got lost— Oh no. Yeah he got lost in the forest in this snowstorm. The snow was coming down, it was white, he couldn’t see and the wind was blowing in he was all alone. Oh no. Yeah, and just when he finally kind of lost courage, he collapsed— Oh gee, that would be bad eh? Yeah, in a snow bank. But what he didn’t realize was luckily the snow bank was on the front stoop of the wood cutter’s cottage. Oh gee.
That was lucky eh? Yeah, that was lucky. And inside the woodcutter’s cottage was the woodcutter’s daughter. Oh no. Her name was Belinda. Oh my goodness. Yeah and Belinda heard the thump when Pookie fell on the porch on the step and so she opened the door and the wind was blowing and she picked up little Pookie who was so sad and discouraged after all this travelling that his little heart was frozen and broken in two. Oh no.
Yeah. Anyway, Belinda picked up Pookie and she saw his little heart broken in two and she brought him inside and she put her hands around the little heart and warmed it all up and then stuck it back into his little rabbit chest and bundled him all up and put him in a nice bed beside the wood stove. Oh gee. That was good eh Mom? Yeah, that was good and that was good he was he was he was at least he was he was he was wonderful.
Yeah exactly. And then the next day, or that night rather, when Pookie woke up after sleeping all day Belinda noticed his little wings. They were all shriveled and not grown and she said “Oh Pookie, look you’ve got wings.” And so she kissed both of his wings, one on the right side and one on the left and then wouldn’t you know it, because of Belinda’s love, oh those wings grew into big beautiful wings that were coloured like rainbows and they had glitter on them and they were just absolutely fabulous. No. Yeah. And so Pookie became able to fly with those wings. Oh gosh.
That was good eh? That was wonderful. It was. And so from that day on Pookie lived with Belinda, the woodcutter’s daughter, in the little cottage by the edge of the woods and he would sleep all day in his little basket and then at night he would go out flying into the woods and have a great time. Don’t tell me. Yeah. Oh that would be funny. That was good eh? Yeah, that was good.
That was the story of Pookie.
*Note: Some people have suggested to me that I should avoid the acronym “LTCF” in favour of something else. Replace the “F” in LTCF with an “H” for home, they say. I will be happy to do so when places like the one my mom was in are more like homes than warehouses and elder jails. Until then, I’m sticking with “facility.”
When I watch the videos and listen to the audio recordings I captured with Mom, I am at once destroyed and delighted.
I miss her and the time we spent together during the last years of her life, and I invariably cry when I re-experience these moments. On the other hand, I am SO lucky to have done everything I could to make her life joyful in her last chapter, and I am always inspired by the indomitable spirit she demonstrated during this extraordinarily difficult time. She loved life. She loved to have fun. She loved people.
Mom also loved to sing (as you may have noticed!). She knew hundreds of songs. Down the Valley was one of her favourites. She and I sang it together thousands of times. Literally. One of them was during a weekly healing music session with Eric in December 2013:
Have you ever felt as looney as a tune? We did. All the time! Mom, Eric and I made a fine looney tune trio, especially when we were unplugged.
Here’s an excerpt from Mrs. Brown You’ve Got a Lovely Daughter (and mother!), which we also sang accompanied by piano. This particular post is to honour my birthday January 28, 1956, which this year I will be marking for the first time ever without my mom in this world. That’s something to think and feel about.
Oh yeah, and just for fun and because Mom would have loved it:
Flashback October 25, 2014: I get lots of positive feedback from far and wide regarding My Alzheimer’s Story. Thank you for visiting, following and commenting on the blog. In particular, people really seem to enjoy watching our “music videos,” which I usually edit and shorten before posting (see here, here, here, and here). This one is raw and “unplugged” so you can get a better feel for how our sessions evolve in the moment.
I can’t say enough about Eric’s skill and flexibility in helping us weave magical musical experiences week after week for more than a year in the late stages of Mom’s illness. The sessions last for 60 – 90 minutes and each flows in a completely spontaneous way, driven by Mom and guided by Eric with me there to hold hands and add to the mix when it fit. The combination works beautifully. We have become a trio of sorts, and we jam in our own uniquely unplugged way.
Although the clip below is about 12 minutes long and therefore only a fraction of the whole session, it should give you a real feel for the spirit and rhythm of the work/play we do together. This particular session was relatively subdued until about two-thirds of the way through when Mom decided she wanted to get out of her favourite blue chair and walk around. That’s when I started to record a slice of the afternoon.
In the clip you’ll see Eric and I following Mom’s lead and supporting and encouraging her when it’s appropriate. We make improvisational offers to which Mom responds and upon which we then build together. Things go from quiet to raucous to quiet to energized again until Mom signals it’s time to wrap up that particular “set.” The part I most wanted to capture (Mom drumming on the guitar) is really dark because of the poor lighting and the fact I film everything on my trusty iPhone 4, but I’m sure you’ll get the idea… 🙂
It’s an early new year’s morning. I sit on the sofa, sip tea and remember the pleasure of last night’s fire. Christmas isn’t long gone, and I love that I leave my decorations up until my birthday at the end of January. I want to stretch the joy of them being without swaddles and boxes for as long as possible.
The sun rises in the east and shines through the large window behind me; its rays travel across the red brick of the fireplace to strike a painted wooden angel that fell from the tree a few days ago, and which I hung on the damper crank because I didn’t know where else to put her. It looks like she feels at home there. I think of Mom, and the amazing grace of this moment as well as that of December 2014 when she and Eric and I celebrated spirit, connection and love. I hear her clap and sing, and watch her smile as if she were here with me.
December 2016: This Christmas will be difficult for me – the first one without Mom since spending special times together from 2005 to 2015, and so many more growing up and in young adulthood. I’m grateful to have this and other video recordings that clearly show that love, music, connection and compassion enable people who live with dementia to engage life well into the later stages of the disease. If you celebrate at this time of year, I invite you to see the hearts and souls beyond the disease and to support people who live with dementia by including them without reservation in the circle of your life.
Flashback December 2014: Christmas is around the corner and Mom, Eric and I are singing Yuletide tunes as part of our weekly healing music session. Here’s “Gloria” as a way to kick off the festive season:
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Flashback December 5, 2014: Mom surprises me every day. Sometimes in a good way, sometimes not so much. To keep moving forward when it’s good, and to not get stuck when it’s not, I’ve learned to make it up as we go along. Go with her flowhas become my mantra.
Today, during our healing music session, Mom started singing about pumpkin pie, randomly inventing lyrics as she went. Eric, who is masterful at musical improv, followed her lead and the three of us were soon off on a silly musical adventure. I grabbed my phone and captured what I could of The Pumpkin Pie Song. When she wasn’t singing, Mom was clapping and thinking about what new lyric she might come up with next. I could see the concentration as well as the happiness in her eyes.
The whole process fully engaged her mentally, physically and emotionally; being able to contribute her own words made her feel successful and competent. I know all of this to be true because I can read her face and her body language and her energy. I see her. I couldn’t help but laugh out loud at Mom and Eric’s creativity. Today, as I sit here typing, I have a great big foolish grin on my face.
Seeing Mom feeling happy and engaged in life despite the Alzheimer’s muck, mire and confusion is SO joyful it makes me smile just writing about it. This Alzheimer’s roller coaster is terrifying, and some of it really and truly sucks. But parts of it are also rich, rewarding and inspirational learning opportunities. And somehow we have to find ways to laugh and have fun. That’s why I keep sharing bits and pieces of our music sessions – to spread a bit of joy and bring a smile to your face too.
I hope it’s working 🙂 🙂 🙂
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Flashback December 22, 2014: This video includes 1) a little bit of Tiny Tim (Tiptoe through the Tulips), 2) a duet “When You Wore a Tulip,” and 3) some Roses are Red poetry in which Mom does a bit of narcissistic rhyming.
My Alzheimer's Story 