Exercise is essential for well being. Everyone knows that. Everyone. So, even though the distances became ever shorter, I helped her to walk each day. Or at least to try to walk. When I missed a day or two for whatever reason (which was rare), it was always more challenging at the next visit. Her legs would be shakier, she wouldn’t be as strong.
But she never gave up. Neither will I.
This video is part of a series extracted from a care conversation with my writer friend Lorrie B. “I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care, and you’re the perfect one to help me do it,” I told Lorrie on Mom’s birthday in 2017.At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!). The other posts in the series are here.
My mom had an unflaggingly positive attitude, as you will hear in the video at the end of this post. It features an audio clip I recorded on Mom’s 87th birthday in 2015; the last one we would have together. When I suggested to Mom that she needed a new sweater because the one she had on was moth eaten, she responded “It’s getting better.”
Everything was always “getting better” as far as Mom was concerned.
She was also outgoing, friendly, interested, engaging, and invariably the life of the party. She adored people, and was highly socially adept. So how did she come to be labelled “violent” and “aggressive” after she moved into a long-term care facility? There was a cluster of reasons, none of which were here fault, nor the fault of dementia. Ironically, one of the reasons was love.
Mom had a habit of giving people what she called “love taps,” light, rapid-fire pats on the hand, arm, cheek, bottom, or whatever recipient body part happened to be in close enough for her to reach. She had done this, as a sign of affection, for as long as I can remember. As her Alzheimer evolved, and her ability to verbally articulate her emotions declined, “love taps” and clapping often replaced words. She used them to express delight, happiness, frustration, and displeasure.
Unfortunately, her love taps and clapping were sometimes not well received, particularly (and understandably), by other residents who lived with dementia, and who didn’t “get” what these “slaps” were about.
This video is part of a series extracted from a care conversation with my writer friend Lorrie B. “I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care, and you’re the perfect one to help me do it,” I told Lorrie on Mom’s birthday in 2017.At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!). The other posts in the series are here.
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“I would not want my mother sitting in a room with loud music and TVs blaring,” my writer friend Lorrie B. said in a zoom conversation on what would have been my mother’s 89th birthday.
I didn’t want that either. But that’s how I found my mom almost every afternoon for the last eighteen months of her life. Most often, she was oblivious to the noise because she had been sedated into a catatonic state.
I had become a thorn in everyone’s side by advocating for better care and less medication, and my visiting “privileges” were meant to be confined to between one and three in the afternoon when Mom was usually “asleep.” But I stretched the rules and arrived more towards 2 p.m. so I had a better chance of having some “awake time” between 3 p.m. and 4 p.m. On her 87th birthday, I made an audio recording of the visit for posterity.
A little over a year after Mom died, I invited Lorrie to listen to the recording with me, and to tell me her thoughts with a view to sharing them and our conversation with as many people as possible.
“I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care,'” I told her. “And you’re the perfect one to help me do it.”
At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!).
I plan on releasing more of our conversation in the coming days and weeks, (or maybe months at my snail’s pace), but for now, let’s start where Lorrie and I started – at the beginning of the visit.
Part of this clip is also in my birthday post honouring my mom here, during which I sang Happy Birthday to her. I invite you to read about the rest of our magical last birthday afternoon together here and here.
September 27, 2017: I never called my mother “mummy.” It’s what my mother called her mother, my grandmother. Maybe that’s why Mom sang “happy birthday Mummy,” when she chimed in two years ago on September 27, 2015, as you will hear below if you care to listen.
The year Mom turned 80 (2008), I sang happy birthday to her every day for two months because I wouldn’t be there on the day itself. Counting those 60 times, I probably sang her happy birthday five score and ten times at least. Every time off key and out of tune I’ll wager (I inherited Mom’s feisty spirit, but not her beautiful singing voice).
As a teenager, I called Mom “Ma,” which she hated. In my twenties I switched to Mom, and later, as the Alzheimer’s evolved, I sometimes called her Patty, which she spelled with a “y,” and which I spelled with an “i,” and preceded by “Pinkie,” as in Pinkie Patti.
Mom frequently responded more readily to Patty, the short form of her given name Mary Patricia, when “Mom,” didn’t seem to work. Maybe because she was Patty for 28 years longer than she was a mother.
Mom’s beloved brother, and her late sister Lee called Mom “Poose” (it rhymes with moose) or “Poosie.” Her late sister Jean called her Patsy, and my grandmother mostly called her Pat. When they were still married, my dad called her “Wid,” or “Widdy.” It’s was a strange term of endearment that I don’t know the origin of, and now never will as the only two who would know are gone. Mom called me Punkie, or Punk for short–a nickname for my nickname as it were.
It’s funny how we acquire different names and labels during our lifetimes. Some we assign ourselves, others are bestowed or cast upon us by family, friends or enemies. Some characterizations may be accurate, many often are not. One thing is certain, people who live with dementia, or who lived with it as Mom did, suffer more than their fair share of inappropriate and unwarranted labels, the vast majority of which are pejorative and harmful.
When I went to visit Mom on September 27, 2015, her last birthday in this place, I roused her from a light sleep with a gentle “Patty,” and reminded her it was her birthday. I sang her happy birthday for what I didn’t know would be the last time. I wrote about it here, and you can listen to my singing (if you dare!), as well as hers, by clicking on the audio bar:
I invite you to read about the rest of our magical last birthday afternoon together here and here.
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When I was deeply moved by the now-classic movie One Flew Over the Cuckoo’s Nest in 1975, I never dreamed I would live through a version of it more than forty years later. This image is drawn from the final scenes in which “Chief” tears the hydrotherapy cart from the floor (as McMurphy had been unable to do despite his best efforts), and throws it through a window to make his escape after having suffocated his friend.
~~~~~~~~~~~~~~~
“Philippe, we have a case like you’ve never seen before,” Philippe Voyer begins as he recounts a story to Quebec Health Minister Gaétan Barrette and hundreds of participants at Quebec’s first-ever Best Practices in Long-term Care Facilities Forum. “We have a man who tore the sink right off the wall.”
Voyer, a researcher and professor of nursing at the University of Laval in Quebec city, surprised the care home staff member who had called him complaining of an unmanageable and destructive patient with Alzheimer’s disease with his answer, just as he likely is the healthcare professionals gathered at the forum.
“That sounds to me like a man with a lot of potential,” Voyer continues with his story. “He’s focused–he had to be to do what he did. He still has a lot of strength, he’s in good physical shape, what he did was impressive. I have no doubt we’ll be able to engage him in some way.”
Voyer looks at the audience, pauses slightly before he goes on. “Then the nurse tried to convince me with more evidence: ‘Oh but Philippe, you should see what he did down the hall. He ripped all the tiles from the floor with his fingers.'”
Voyer is one of a small but growing number of medical professionals worldwide who have begun to understand that so-called behavioural and psychological symptoms of dementia (BPSDs) that are blamed on Alzheimer disease and other forms of dementia are in fact not caused by the disease.
“The disease is a predisposing factor,” Voyer admits, “but it’s not the main cause. Boredom is. People in long-term care get bored, and, like we all do when we get bored, they find things to do. But the things they find to do are not always in line with what facility staff would like.”
I know the truth of what he’s saying because I witnessed it myself day after day when Mom was in what I have come to describe as “elder jail.” I’ve also heard countless stories from other care partners who experienced the same thing when they placed family members in LTC. It’s not the disease. It’s how we “care” for the people who live with it. Misunderstanding their behaviour often leads to over-medication with antipsychotic drugs.
“Some residents who have dementia may have worked all their lives doing manual labourer, for example,” Voyer elaborates. “When they feel bored, they go back to doing what they know. We learned that the gentleman who tore the sink off the wall and the tiles from the floor had been employed in home construction. He was just doing what he knew how to do. Likewise, people who are bored may start to explore. They go into other people’s bedrooms. When they do, they get involved in altercations with other residents. Soon they are labelled as having behavioural issues. What to we do then? We medicate them. It’s as simple as that.”
My experience and Voyer’s observations are supported by a growing body of evidence-based research. Recent work by Dr. Jiska Cohen-Mansfield, who has been studying age-related dementia for decades, and is an authority on the subject, clearly identifies these main causes of responsive behaviour:
boredom
lack of stimulation
loneliness
lack of activity
insufficient social interaction
being uncomfortable
pain
“It’s not rocket science,” concludes Voyer. “There are many things we can do to change the situation. And I can tell you with certainty that antipsychotics are not effective in alleviating boredom. It’s time to rethink and reduce our use of antipsychotic medications in treating people who live with dementia.”
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I was pleased to attend on Monday January 31, 2017, when Senators Ogilvie and Eggleton, and their colleague Senator Olsen welcomed a six-member panel to discuss issues relating to the committee’s report, which called for the development of a national dementia care strategy for Canada. I was also grateful for the opportunity to add my voice in the Q & A session, which followed the panel discussion. This poem was inspired by the report, the panel discussion and my own remarks.
a poem for the senate
Dedicated to the cause of creating a dementia care strategy for Canada.
This pic popped up in my Facebook feed this afternoon under “memories.” Sharon Call, one of Mom’s beloved one-on-one companions snapped it with her phone four years ago today. It made me feel a little sad and melancholy and called forth this poem. I love experimenting with the shape of poetry as well as with the words (as you may have noticed!).
the sun frosts our backs
like the chill dawn air
kissed fallen leaves
as we slept
snug as bugs in rugs
made of goose down, fluff and feathers.
you stand
in a deep pink
felted wool coat i bought
in paris on a whim because it matched my lipstick
now i shine in fuschia and a long string of pink plastic pearls.
my left hand lies soft
on your left shoulder, my right
supports your elbow, steadies an elder arm.
the sudden flutter of wings when
a chickadee alights
on two gifted fingertips
to eat black oil sunflower seeds
from your outstretched hand
“shhhhh,” I say, “don’t scare her.”
“I won’t,” you whisper in reply.
time waits patiently
for her to finish
see silvered white hair
and a twinkle twinkle little star
swinging from my one visible ear
while a blue moon hangs from the other
hidden in the space between us?
how intent you look in this
golden frozen moment.
sudden remembered joy
causes salty sweet
tears to roll down
grieving cheeks
and me to wish
you were here
feeding little
birds once
again.
Mom hamming it up on her back deck, September 24, 2012.
September 27, 2016
Dear Mom,
Today marks the eighty-eighth anniversary of the day you were born. It became a tradition of sorts that I should write or do something special on your birthday.
In 2008, when you turned 80, we threw you a big surprise party in August, we danced through the summer, and I sang happy birthday to you every day for eight weeks because I couldn’t be with you on your actual birthday. In 2010, I posted these beautiful pictures of you in a pink sweater down at the dock. I have dozens of photographs of you, but these are among my favourites.
I miss you Mom, but because I have all of these pictures and videos, prose and poetry, I feel like you are here with me, and in a sense you are. This morning there were two cardinals on my back deck at dawn. You were always excited when you saw a cardinal, and so I was reminded of you. I write to the tick-tocks of your antique clocks every day, and I remember you counting their chimes when you came to visit. I still hear the sound of your voice saying “five.” Your big wooden salad bowl hangs on a hook in the kitchen; your beat-up colander is suspended above the sink; I just put your winter quilt on my bed, and each morning I eat breakfast at the half-moon table, just as we did hundreds of times together. It means a lot to have your things around me. But they are things, they are not you.
Sometimes, randomly and suddenly, I will feel an empty space in the middle of my chest. It’s a physical feeling, a breathtaking emptiness like nothing I’ve experienced before. I wonder how that can be because there’s still bone and tissue there, and yet it feels like there’s not. I am whole, and yet I am not. When that void opens up in my chest, I start to cry. I weep at the thought of your absence. Paradoxically, our deep connection flows through the hollow and into my core. Like everything, the feeling passes; my tears subside and I go on living, passionately and fully. Now that you are gone to another place, you wouldn’t want me to drown in grief and despair. “Life is for the living,” you would say.
Today, on what would have been your eighty-eighth birthday, I celebrate you and your fierce courage and determination. I imagine you smiling and dancing and singing unencumbered by a broken body and failing mind. I hope you are not resting in peace or sleeping deceased, but getting up and going the way when you did when you were here in flesh and blood as well as in spirit.
My Alzheimer's Story 