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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A friend took the picture above of Mom and I on August 16, 2009, a couple of years after Mom was found to have Alzheimer disease. At the time, Mom still lived on her own, with her cat Pia Roma, in the big red brick house on the hill. It would be another two years before I moved back to Canada permanently to take care of her.
When the pic came up as a memory prompt on Facebook a year and a week after Mom died, I re-shared it because we are so beautiful and joyful in that moment. That post elicited this comment from Diane (not her real name), a FB friend who had known Mom when they were both active in the ladies local golf “circuit:”
“Susan, this is a beautiful photo of your mom (and you), and it is how I want to remember her and probably how she wants to be remembered. She was such a gracious and elegant lady!”
I’m sure Diane’s intentions were good, but her comment raised my hackles. What right does she have to weigh in on what I choose to share or not about my mom?
Diane followed with an email:
“Susan, the main reason I wrote is also that your mom was so proud and self-conscious of her looks, always ‘coquette’, was always beautifully turned out, but when I look at some of the photos you shared on FB when her Alzheimer Is advanced, not much life in her soft eyes, then sometimes the ones where she is bruised, I think to myself, this is not something she would have wanted shared or people to view her like that.”
My hackles rose even further. I took a bunch of deep breaths, and composed an email in reply.
I wrote about how Mom was there when I was born, and how I was there when she died. I knew her for 60 years; she was my mother. I knew her better than anyone. I didn’t just see her style, grace, pride, pizazz and ferocity every now and again, I experienced it for decades. She taught me how to be in the world. I lived inside her for nine months. She still lives inside me.
I wrote about how I struggled for a long time trying to decide whether or not to post “ugly” images of Mom on my blog. She wasn’t one to air her dirty laundry in public. Hell, she didn’t tell me my father had tried to commit suicide until four months after the fact, and she never told her closest friends.
I wrote that, on the other hand, Mom was a fighter. If she believed something was wrong, she was a pit bull, an effective organizer, and a relentless advocate. She made her voice heard, she wasn’t afraid of anyone, and she didn’t give up. And she was always especially kind to the elderly.
I wrote that after months of soul searching, I decided it was more important for the truth to be known than it was to worry about appearances.
Then I didn’t send the email.
Because Diane is right.
Every time I post an “ugly” picture, I feel sad and torn. Sometimes I feel like I’m going to be sick. It’s hard every single time because it’s true, Mom probably wouldn’t want to be remembered like that. And I don’t want to remember seeing her that way, the way she is in the ugly pictures and videos. I don’t want to remember not being able to do anything to make it better. To bear witness to what happened to her every day was excruciatingly painful. Each time I post a picture or a video or a conversation, I feel that pain. Lots of times I weep.
Yes it’s true, Mom probably wouldn’t want to be remembered like that. Nor would she have wanted to live the way she was forced to live for the last four years of her life. She hated taking drugs. She loved to be on the move. It was cruel and inhumane to chemically and physically restrain her. She didn’t deserve the treatment she got, and neither do hundreds of thousands of others who endure the same and worse.
It’s important that the public be made aware of what occurs much more frequently than people think in hospital wards, long-term care facilities, and behind the locked doors of memory care units. I want everyone to see the reality of what happened to my mother, difficult though it is for me to share it. Because this should not happen to vulnerable elderly people. It’s just plain wrong.
I was powerless to change Mom’s situation, and it’s too late to help her now; she’s gone.
But it’s not too late to help others, and ultimately it’s also not too late to help my future self should I also develop dementia and require care. I post the ugliness I would really rather not share because sweeping it under the carpet would dishonour my mother more than showing the truth of what happened to her does.
The shame of her bruised face and vacant eyes belongs to those who sedated her with drugs and neglected her care. Dementia was not to blame. And the shame doesn’t belong to her. Or to me.
If she were here to advise me, Mom would tell me to do what I believe is right, and not to pay attention to what people think or say.
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Like every human being (whether they live with dementia or not), Mom deserved to be treated with dignity and respect and to be provided ongoing opportunities to engage life in whatever way she could until the day she died. She loved to be active, involved, singing, dancing, and interacting with others. Her lively spirit and sense of humour are captured in the videos below, taken on the morning of November 16, 2012, the day she went to the nursing home.
We need to change the way we care for the elderly, particularly people who live with dementia, and particularly those in LTCFs. Most deserve much much better than what they’re getting. They should be provided the kind of love and support Caroline and I gave Mom when we lived with her in her own home.
Everyone should be pampered:
Everyone should be helped to let the sun shine in:
I have a love/hate relationship with writing. The bit I love best is being finished. The process, not so much. Maybe that’s why I’m writing lots of poetry lately — it often seems faster, and a little easier.
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No one escapes grief and suffering. But a good number of dementia care partners seem to have more than their fair share. Many are devastated by what they experience as the slow and cruel death of loved ones as they watch them disappear before their very eyes.
I’m fortunate to have never felt like my mom was disappearing, or that I had lost her, or that she was “a shell.” Rather, in some ways I felt she was more her true self than ever. So I didn’t mourn losing her as she lived with dementia, together we made the best of it. But I do mourn her death, maybe I always will.
This piece is inspired by an anonymous poem someone shared on Facebook and to which I added and subtracted to create something a little more poetic.
In the original, one phrase in particular struck me: “she is…even your first enemy.” I had a wonderful relationship with my mother. It was also not easy, which I wrote about on Mother’s Day 2012. I am my mother’s daughter: independent, strong-willed and determined. One of the gifts of Alzheimer disease was to provide me an opportunity to heal some of the scars that resulted from our rock-and-roll mother/daughter relationship. I’m grateful for that, and for the truth in the words below.
She’s the whisper of leaves in the wind; their rustle underfoot on an autumn walk. She is the smell of cookies in the oven, the wet earth after a thundershower, summer flowers in bloom. She is incense in a sacred place, the fragrance of life itself.
She embodies the colours of the rainbow. She is the lullaby of a gentle rain rocking you to sleep. She’s the cool hand on your brow when you’re sick, warm arms around you when you cry, and the smile of shared joys. She is the promise of new beginnings at sunrise and gratitude at the day’s end.
Your mother lives inside your laughter. And you in hers. She is the place you came from, your first home, your last refuge. She witnessed your first step; she is the map that guides each of the millions that follow. She is your first love, your first friend, even your first enemy, but nothing can separate you: not time, not space, not even death.
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:
In March 2017, I gave my first four live BANGS(TM) mini-workshops. BANGS(TM) is the model that emerged based on my own experience of being a care partner to my mom who lived with dementia of the Alzheimer’s type.
The three days during which I delivered the sessions were fraught with technical issues, forgotten bit and pieces and the usual training challenges. At the end of each session, I felt grateful for the opportunity to be with and to be valued by other caregivers for the experiences we shared.
Also at the end of each of the fours sessions, I read “let me shine,” a poem I wrote to help counter the prevailing negative narrative and stigma associated with dementia and the people who live with it. When I got home tonight, I found this beautiful and similarly themed piece in my inbox thanks to Dementia in Dignity (enjoy):
Every time I post an “ugly” picture, I feel sad and torn. Sometimes I feel like I’m going to be sick. It’s hard every single time because it’s true, Mom probably wouldn’t want to be remembered like that. And I don’t want to remember seeing her that way, the way she is in the ugly pictures and videos. I don’t want to remember not being able to do anything to make it better. To bear witness to what happened to her every day was excruciatingly painful. Each time I post a picture or a video or a conversation, I feel that pain. Lots of times I weep.
My Alzheimer's Story 