#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
When Australian physiotherapist Meggen Lowry forgot her keys (car, house, and others) in the glove box of her partner’s car, she wasn’t bothered. She had a spare for her Subaru 4×4, and that’s all she really needed to drive herself to a full slate of appointments that summer day.
What she didn’t know when she left her flat was the battery in the spare key was dead. That meant she’d have to unlock and lock the vehicle doors manually as she made her way around town to visit her clients.
No problem. Or so she thought.
As it turned out, the forgotten keys, the spare key battery fail, certain design features of her vehicle, and other random circumstances conspired to create a day that went from good to bad to worse. And in the end, a short scribbled note she’d written in the margins of some paperwork five years earlier would prompt her to discover dementia learning amidst the disaster. Here’s the note:
I was charmed by Meggen’s recount of her adventure; I hope you will be too. More important, I appreciated her self-reflection and spot-on connection at the story’s conclusion.
I wonder if you’ll agree…? (Meggen starts telling her story at about 01:35 into the podcast below).
Meggen Lowry is the Principal physiotherapist at Next Step Physio in Brisbane, Australia. She is passionate about healthy ageing, and serves on her state’s gerontology board of the Australian Physiotherapy Association. Meggen champions movement as medicine for both the body and the brain. She partners with aged and community care organisations to enhance access to both PREhabilitation and rehabilitation services for older adults, and promotes inclusion for those with cognitive impairment. Meggen developed Clock Yourself; an exercise program that combines brain games with physical exercise. See www.clockyourself.com.au for details.
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
This post is dedicated to the late Dr. Richard Taylor, advocate Kate Swaffer, and care warrior Leah Bisiani.
~~~~~~~~~~~~~~~
“I think I could take a few steps,” Mom said, “even if there’s not too many.”
It was her birthday. September 27, 2015. She’d been “behind bars” for almost three years, during which she had been inappropriately medicated, and forced to remain seated for “her own safety.” She spent most of the daylight hours chemically restrained (with antipsychotics), and physically restrained (in a recliner or a wheelchair), despite the fact sitting still was completely contrary to her nature. She could hardly stand anymore — her gait had become unmanageably unsteady due to the meds, and from sitting most of the time.
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.
Admittedly there are people out there who insist on wallowing in misery, and seeing the glass half empty instead of half full. They whine and bitch and complain about everything all the time.
Are you one of those? I thought not. I bet you chose “a) dance” just like I did. Yay!
I believe that, given the opportunity, most people who live with dementia would make the same choice. Because just like most of us, they would rather dance than be bored to tears or drugged with antipsychotics and left to sit around like zombies.
But you don’t have to take my word for it; see for yourself:
At a loss for things to do besides dance? Here’s a starter list of 101 activities you can enjoy with someone living with dementia.
If you like this post, why not subscribe to my free updates?
Image copyright: antonuk / 123RF Stock Photo
Living well, eating well, and getting plenty of exercise are the best ways of staying healthy overall, aging well and delaying or even staving off Alzheimer disease and other dementias.
Walking is among the best exercises you can do (I walk for about an hour and a half each day), but more fun than walking in my opinion is dancing – especially when you do it in a group. It’s energizing and fun. Plus, learning something new like these seniors are with the hip-hop moves in this video helps create new pathways in the brain, which is thought to be a great way to develop “brain muscle.” AND, If that weren’t enough exercise like this releases endorphins that help people maintain a positive attitude.
So it’s all good. No downside. Yay for music. Yay for dancing.
By the way, can you guess which one of these hip-hop dancers has dementia?
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):
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.”
Subscribe to my free updates here.
The four swimmers (aged 86, 89, 92 and 93) who are the subjects of the inspiring video below broke a world record in a 200-meter freestyle relay in which they each swam 50 meters. If that isn’t inspiration enough, one of the two women on the team was unable to attend the previous year’s event because she was recovering from a broken neck at the time. Asked what kept her going, she responded: “Swimming!”
If you think this post has nothing to do with dementia, you’d be wrong. Exercise and attitude are important factors in staying healthy as we age, particularly with respect to boosting brain power. Here’s what Canada’s ParticipACTION program says:
“Physical activity is protective against the onset of dementia and slows its progression. The deterioration of the brain’s prefrontal cortex and hippocampus, which play important roles in complex thinking and memory formation, is usually associated with dementia. Luckily, these two areas are very responsive to physical activity, and tend to be bigger in size among people with higher fitness levels. This means that by constantly stimulating your brain through physical activity, you can effectively extend your years of good mental health.”
It’s equally important for people who live with dementia to stay physically active and to engage with life for as long as they possibly can. Here are 101 activities you can do with your dementia care partner. Activate!
If you like this post, why not subscribe to my free updates?
~~~~~~~~~~~~~~~
“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.'”
“Determined!” I said to her,” Voyer quips. The audience laughs. So do I as I watch the video of Voyer delivering his remarks to the forum (in French). He’s doing an excellent job of reframing, of showing his colleagues why we need to see things differently.
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:
“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.”
Amen to that Philippe, amen to that.
https://myalzheimersstory.com/2017/01/08/alzheimer-annie-invites-you-in/
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Too often people are constrained by what they are told they can’t do rather than encouraged to do what they can.
I learned so much with respect to abilities and labels during my Alzheimer’s story with Mom. I wanted to help her engage life as much as she could for as long as she could; that was my goal. Yes, her abilities declined as the disease progressed, but there were always things she could do. Always. That’s why I never stopped trying new things or re-trying things I had tried before to keep her as active and as healthy as possible despite the degeneration caused by the disease.
On September 6, 2014, two years before she died, I experimented with a basket of pompoms of different colours and sizes. Mom started playing with the pompoms as soon as I put the basket on her lap. She picked them up, rolled them around in her hands, held them up to show me.
“This is a yellow one,” she said of the pink one pinched between her thumb and index finger.
“Yeah, it’s bright,” I replied
“It’s bright,” she echoed. Repeating what was said around her had become Mom’s way of making conversation and staying connected with people. She may or may not have understood everything that was being said, but she wanted to participate damn it! That was her character. She drew on decades as a successful real estate agent for her “social chit chat” skills. She had a hard time completing sentences from early 2014 onward, but she still had moments of astonishing clarity and a strong will to express herself.
Here’s a snippet of what happened with the pompoms:
I rarely mourned the loss of the Mom I knew: a competent, funny, fiery, fiercely independent business woman who was always on the go. Sometimes during our journey, I prayed that she would both go and stay. Her condition was sometimes heartbreaking to witness, but I didn’t shed more than the occasional tear over the things she couldn’t do — I focused my energy on the many things she still could do.
Mom may have bee confused, but my mission was clear to me. I wanted to help her engage with life and with others for as long as possible. We did simple things together: stood up, sat down, walked a little way, counted to three or four or five or 10 on a good day; we sang, clapped our hands, made up silly rhymes, “cooked,” had tea with friends, went for a drive, picked out the yellow and green pompoms from the basket on her lap. We listened to music, we made music, I painted her nails.
Sometimes we talked about dying. Or about love. Living with Alzheimer’s wasn’t a bowl of cherries for either of us. Just like it’s not for millions of others around the world who live with dementia of the Alzheimer’s type and other dementias right now. We could have moaned, whinged and complained about our sad lot. We could have given up. But that wasn’t in Mom’s nature, nor is it in mine. What good would giving up do? Better to keep going. When happiness fails to knock at your door, better create your own joy.
A basket of pompoms is as good a place to start as any.
https://myalzheimersstory.com/2017/09/11/flute-flies-love-taps/
Isn’t it amazing that many animals know intuitively what some humans seem unable to learn or unwilling to apply?
Here are a few person-centered dementia care partner tips inspired by a viral video of two friends taking a walk:
1) Do stuff they like, together
2) Focus on capacities
3) Adjust your pace
4) Be supportive
5) Be patient
6) Exercise
7) Love
My Alzheimer's Story 
I love the quote from the “old man” towards the end of the video below. He says:
“When people start stopping, that’s when they start getting old.”
I think the same principle applies to people who live with dementia. I also believe that by “getting to know” people who live with dementia, and understanding who they really are, we can change the negative narrative associated with Alzheimer’s disease and related dementias (ADRD) as well as those who live with diseases that cause dementia.
We need to think differently about what it means to live with ADRD, just like the young people in the video change their thinking about what “old” is by experiencing what “old” people can do, and also by learning from them.