Tag: compassion

Advocacy, Inspiration, Life & Living

7 powerful thoughts on the resilience brilliance of elders and people living with dementia

amazingsusan

“The elders in our lives teach us so much and I just keep trying to pay attention,” wrote Sonya Barsness in reply to my comment on her blog post entitled “Resilience.”

Barsness calls herself a “revisionist gerontologist.”  Like me, she believes we need to change the paradigms surrounding aging and dementia. Her work revolves around “promoting and applying a paradigm shift to everything we do WITH people growing older and growing with dementia.”

I’m an avid reader of her blog “Being Heard,” and was blown away by the post on resilience. After I read it, I commented:

“This post is breathtaking Sonya. It puts into words what I observed being with my mom during the last five years of her life while she lived with dementia. I called it strength. “You are so strong, Mom,” I would say to her. Or, “You are so brave, Mom.” Yes, she was strong, and yes, she was brave. But you are dead right about resilience. Above all, Mom was resilient beyond belief. Thank you for reframing it so eloquently.”

I extracted these seven powerful thoughts from the post to whet your appetite:

1) We often use the term “frail” to describe elders. Yet, it does not properly acknowledge the resilience that older people show on a regular basis, in various ways.

2) …people living in nursing homes, people living with dementia, people who are not 98-year old weightlifters are also resilient, [although it could be in a way we might not easily see].

3) Elders are experts at being resilient. Perhaps this is true by the very nature of acquiring more life experiences through growing older – there simply are more opportunities to be resilient. Perhaps it is also due to the unique challenges and opportunities in “being old” that encourages resilience.

4) [Consider] the resilience of the present: how a person shows up every day. Perhaps elders are particularly resilient because of what they have experienced, as well as resilient for what they are experiencing now, and will experience [in the future].

5) Could their resilience be in each breath they take, in how they are living in the world, yet leaving it? Could their resilience be in their gifts to us about the fragility of life, and the reality of death?

6) There is resilience in living with the cognitive changes of dementia. As a person sees the world differently through the experience of dementia, they try to make sense of it. They are problem-solvers, rather than how we often label them as problem-makers.

7) Through their courage and resilience elders [and people living with dementia] are revealing to us how to navigate some of the most fundamental and pure human experiences.

I encourage you to read the whole post here. You may also wish to read the inspiring posts below.

https://myalzheimersstory.com/2015/08/30/we-all-go-through-rough-patches-heres-one-thing-that-helps-us-get-to-the-other-side/

https://myalzheimersstory.com/2018/09/21/3-excerpts-from-the-best-article-on-dementia-i-have-ever-read-and-a-link-to-the-full-meal-deal/

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Care Partnering, Challenges & Solutions, Toward better care

10 reasons people living with dementia get up in the night, and what often happens when they do

amazingsusan

Contrary to what many people believe, people who live with dementia behave, for the most part, in the same way the rest of us do. Their behaviour is – again, for the most part – NOT the result of their dementia or whatever disease (e.g. Alzheimer) caused it. Rather, like all behaviour, it is driven by human emotions, perceptions and physical conditions, which means that the reasons people living with dementia get up in the night are the same reasons the rest of us do.

For example, they may:

1) Feel afraid

I remember being terrified during thunderstorms when I was a kid. I would cross the hall to my parents bedroom and ask if I might crawl in with them. My mother never said no; she always lifted the covers to let me in, and then cuddled close to comfort me. When Mom felt afraid and wanted to crawl into bed with me, I also never said no.

2) Be lonely

Who among has not at some point in her or his life felt alone, lonely and disconnected – especially at night, and/or when experiencing loss. When we feel lonely, it’s natural to search out others…isn’t it?

3) Need to use to the toilet

For the last forty years or so, I’ve gotten up to have a pee on average once a night, sometimes more. Luckily, because I don’t yet have dementia, no one has drugged me for doing so. But, unless things change, if and when I get Alzheiemer disease and am locked up in a Dementia Jail, I’ll be sedated for the thing that I will have done for half a century by then because it’ll be labeled as “wandering.” How do I know? Because that’s what happened to my mom. She got up in the night to use the toilet, and as a result was drugged into a catatonic state for the next four years.

4) Feel restless / not be able to sleep

I’ve suffered from insomnia since I was a teen at which time I was prescribed Valium by my family doctor. Valium. At age 15. Drug culture then; drug culture now. The Valium didn’t stop my insomnia – I still endure it two or three times a week. When I do, I just get up. One day, if and when I have dementia of some kind, I may be labeled a “wanderer.” Maybe you will be too, unless we change the broken system.

5) Not know where they are / think they are in a strange place

Have you ever woken up while staying in a hotel or at a friend’s place, and been momentarily disoriented? You ask yourself where you are because the surroundings don’t look familiar. When this happens to me, I usually remember fairly quickly that I’m travelling and not in my own home. But during the time between waking up, and becoming re-oriented I feel confused and kind of scared. I imagine this is what it must be like for someone living with dementia, except the reorientation part may take much longer (i.e. minutes, or sometimes even hours, or days). Listen to what it might sound like when this happens, and what not to do when it does!

6) Be physically uncomfortable (i.e. hungry, thirsty, hot, cold)

Do you sometimes get up in the night for a snack? Or an extra blanket because you feel cold? Or to open the window because you’re too hot? Besides trudging to the WC at least once a night, I also get up almost every night and have a glass of soy milk and a piece of chocolate – sometimes in a sleep-walking-kind-of-slumber!

7) Have a bad dream

Ever wake up with a start in a cold or hot sweat because you’ve been dreaming something dreadful? And the dream is so vivid that you are unsure if it was dream or reality? I bet the same happens to people who live with dementia. Maybe even more often than it happens to the rest of us, particularly to those living with dementia with Lewy Bodies.

8) Have heard an unusual sound or noise

One night a few years ago shortly after I moved into a new house, I heard a big crash. I was scared to death. I didn’t get up to investigate. I hid under the covers instead. But that’s me. Some people would get up to check it out. When I got up in the morning, I found that a big mirror had fallen off the wall and onto the living room floor. Miraculously it hadn’t broken.

9) Be a “night owl” or have worked the night shift

Some people work at night all their lives. For others, being a night owl is their way of being in the world. Sleep all day, stay awake all night. And then oops! We want them to fit with our schedule. No wonder they get angry and upset.

10) Think it’s daytime, not night

So this is the one that’s out of the ordinary. It’s tough to imagine how someone might think it’s the middle of the day when in it’s the middle of the night and vice versa. Nevertheless, try to conjure up what that might be like, or read this real-life nighttime conversation between Mom and I.

Most of us respond in a normal way when we find ourselves in certain sets of circumstances. Most of us wake up in the night from time to time, or even frequently. When we do, we may get up – it’s normal to do so.

But what happens when people who live with dementia get up in the night for any of these reasons above? Their behaviour is labeled aberrant, partly because once they are up, they forget the reason why they are up, and they become lost and/or confused because of their dementia.

Is this stressful for family members who are care partners? Yes, of course. Do they get frustrated and exhausted as a result? Yes, they often do. I know, because I’ve travelled that road. Is it inconvenient and challenging for care workers in institutions when residents walk around at night? Yes, it is. But the onus is on us to find compassionate solutions to address these issues, and not to blame the behaviour we find challenging or inconvenient on those who are living with dementia, and who are behaving just as the rest of us would under similar circumstances.

And all of this is yet ANOTHER reason we need to #BanBPSD.

More posts and PDFs in the “20 questions”series.

https://myalzheimersstory.com/2018/02/02/20-questions-to-ask-when-a-care-partner-or-resident-walks-around-at-night/

https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/

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Care Partnering, Life & Living, Tips, tools & skills, Toward better care

what do you do to calm your loved one with alzheimer’s disease or other type of dementia?

amazingsusan

Another Quora question and answer I thought it might be useful to share to help others.

~~~~~~~~~~~~~~~~~~~

Whatever you do, don’t tell them to calm down! Everyone hates being told what to do, including people who live with dementia day in and day out.

A good strategy is to not make them feel anxious in the first place, and then you won’t have to calm them down. To do that, try my BANGS approach:

BANGS: 5 surefire ways to stop aggression before it starts

There’s a big myth out there that dementia causes the people who live with it to be anxious when it’s actually a whole bunch of other stuff that, in most cases, lies behind the words and actions they use to communicate and that those around them find challenging.

For example:

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

Avoid noise (among other things):

loud sounds and dementia mostly don’t mix

Also, ask yourself these questions, and based on your own responses, adjust your behaviour accordingly:

20 questions that help explain why people with dementia get agitated and physically aggressive

And if you don’t manage to avoid a crisis, here’s what to do in case of one:

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

I have 600+ posts on this blog; they include tips, tactics, strategies, lived experience, videos, audio, pics, etc. Explore! (to subscribe for free – see below)

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

Teepa Snow demos 10 first steps to calm & comfort a distressed person living with dementia

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Care Partnering, Life & Living, Tips, tools & skills, Toward better care

how difficult is it to support someone with alzheimer’s or another form of dementia who cannot recognize or remember you?

amazingsusan

Someone asked me this question on Quora. I thought it might be useful to share my reply here as well so others might be helped with the information.

~~~~~~~~~~~~~~~~~~~

How difficult it is depends in large part on you, the care partner.

If a care partner is devastated and grieving over the fact the person they love who is living with dementia doesn’t recognize them, I think she or he will find it much more difficult and stressful to provide good, loving, compassionate care.

On the other hand, if the care partner can let go of his or her ego, and understand that being recognized by name or by face is really not that important, then I believe he or she will have a much easier time as a care partner. She or he will be less stressed, more relaxed, more loving and compassionate, more open to going with the flow, and more able to find joy, happiness and fun.

These two links expand on the idea:

it doesn’t matter if they know you or not

20 great questions to ask when a loved one with dementia doesn’t recognize you anymore

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Advocacy, Inspiration, Life & Living, Love

imagine how much suffering could be spared!

amazingsusan

My friend Lorrie B. is an amazing writer, editor, translator and primary care partner to her parents, both of whom live with dementia. Lorrie is also an insightful blogger who documents her care partnering experiences here: Unforgettable.live.

Like me, Lorrie is also insatiably curious, and, since becoming her parents primary care partner, has done extensive research related to dementia (as have I!). Despite having read reams and reams of dementia-related stuff, Lorrie and I agree the article referenced in this post is one of the best we’ve come across on living with dementia. Lorrie left this comment:

“Wow. I’m with you, Susan, this is one of the best articles about “living with dementia” that I’ve read in the past three years of scouring the media. Such a beautiful and valuable perspective, level-headed and lyrical. I saw both my parents in many of the instances that she mentions – if we had more of this thinking, imagine how much suffering could be spared! Honestly, if people with dementia can teach us to think more with our hearts than our heads, it would benefit everyone to be in their world and feel the power of love beyond the brain. Thank you so much for finding and sharing this.“

Lorrie’s with me and I’m with her – we’ll all benefit and suffer way less when we feel the power of love beyond the brain.

You said it Lorrie B.!

#FightTheGoodFight #WeCanCareBetter

~~~~~~~~~~~~~~~~

“you said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network.

~~~~~~~~~~~~~~~

One of Lorrie B.’s blog posts: Lesson #29: Hope Springs a Kernel

https://myalzheimersstory.com/2018/09/21/3-excerpts-from-the-best-article-on-dementia-i-have-ever-read-and-a-link-to-the-full-meal-deal/

https://myalzheimersstory.com/2017/12/03/four-years-later-is-too-late-for-my-mom-but-its-not-for-others/

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Advocacy, Inspiration, Life & Living, Love

3 excerpts from the best article on dementia i have ever read (and a link to the full meal deal)

amazingsusan

Sometimes you come across something that captures everything you want to say so brilliantly that it literally takes your breath away, and makes you weep in gratitude.

Sallie Tisdale’s article Out of time: the un-becoming of self, in the March 2018 issue of Harper’s Magazine, is one of those somethings. It says in five pages what I have tried to articulate in the more than 600 pages on this blog, in workshops, webinars, conversations and comments, with mixed success as best. Yet Tisdale does it beautifully, succinctly and poetically.

Here are three important excerpts from her compelling piece:

“The stark fact is that dementia is incurable, progressive, and fatal, but here is the surprise: in the company of [people who live with dementia], one finds peace and unquestioned love in at least as much measure as in the rest of the world. I watch my clients navigate each day’s puzzling details. I know their efforts may look to many observers like an embarrassment of loss. I see the riches: the brave, vulnerable, completely human work of figuring things out. People with dementia sometimes have a rare entrancement with their surroundings, a simplicity of perception, a sense of wonder. Being with a person who has dementia is not that different from being with a person who doesn’t share your language. It is a little like talking to someone who has lost her tongue and cannot speak, has lost his hands and cannot write. This is not a bad thing; it is just a different thing. It requires a different kind of attention.”

~~~~~~~~~~~~~~~~~~~~~~~~~

“The fact that my own me-ness persists is obvious, and yet a persistence of identity is one of the last things we expect with [people who live with dementia]. They seem different to us; mustn’t they be different to themselves? The spate of recent research considering how a person with dementia actually feels tells us no, not really. People know they have a memory impairment, but they feel themselves to be the same person, even in late stages of the disease: “I’m like a slow-motion version of my old self,” says someone with dementia. The possibility of pleasure, let alone contentment, for this person is barely acknowledged. A team of researchers called our current vision of dementia the tragedy discourse. Another group notes that most researchers have shown “a stark disinterest in happiness,” and their assumption of distress is because that is “the only available lexicon for experience, the only available lens through which dementia is viewed.” Surveys have found that Alzheimer’s disease, the most common form of dementia, and cancer are the diseases that people fear the most. The communal response to dementia seems to invite only existential despair.”

~~~~~~~~~~~~~~~~~~~~~~~~~~

“Yet people with Alzheimer’s consistently rate their quality of life higher than their family members do. In a large international study, people with cognitive impairments were no less happy than healthy people. When family members are upset about a relative’s decline, certain it is a terrible experience, they are not always clear on who is suffering. My friend Kate’s mother had Alzheimer’s. She had always worn careful makeup, and she was uncomfortable leaving the house without it. But her makeup became exaggerated, almost clownish, and she refused Kate’s help. Looking in the mirror, she liked what she saw. Going out to a restaurant became, for Kate, “an exercise in my own discomfort, being willing to let her be as she was.”

The full article is here. I strongly encourage you to read it.

 

https://myalzheimersstory.com/2015/08/13/my-mom-still-counts-just-like-everyone-else-and-she-deserves-better-we-all-do/

https://myalzheimersstory.com/2018/08/10/my-mom-is-a-question-mark-august-9-2016/

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Advocacy, Life & Living, Poetry

ascendants: awakening to where and whom we came from

amazingsusan

Some days I miss my home and my mom more than others. I think about her, and my grandmothers, and my grandmothers’ mothers and grandmothers, and their grandmothers and so on.

Ascendants: those from whom a person is descended, or from whom she derives her birth, however remote they may be. Everyone has two ascendants at the first level, her mother and father; four at the second level, her maternal grandmother and grandfather, and her paternal grandmother and grandfather; eight at the third etc. Thus, as we ascend the various lines of our ancestry which fork at every generation, sixteen ascendants are found at the fourth level; thirty-two at the fifth; sixty-four at the six; one hundred and twenty-eight at the seventh; and so on. By this progressive increase, we have, at the twenty-fifth generation, 33,554,432 ascendants. 

And, ascendant:

“Thus, astrologers believe that the ascendant signifies a person’s awakening consciousness, in the same way that the sun’s appearance on the eastern horizon signifies the dawn of a new day“

 

ascendants

This poem is dedicated to all those who went before us.

©2018 punkie

ascendants

the memory of you
sits by my side
like my own shadow
from which i can’t hide

you whisper in morning
sing soft through the night
everywhere, all the time,
and yet just out of sight

it’s strange how we leave
our flesh in the dust
while our essence lives on
in those whom we trust

each one of us comes
from the millions before us
ancestors who lived
on the plains, in the forests

they sailed on the seas
and travelled on trains,
to find a home in the wild
and give it a name

they carved livings from nothing
cried tears in the rain,
prayed for more sunshine,
sang life’s dark refrain

there’s no letting go
of those in the past
i’ll join them at sunrise
when i leave here at last

then we’ll be one
as we were once before
together in peace
in the vast evermore

 

©2017 Susan Macaulay. I invite you to share my poetry widely, but please do not reblog or copy and paste my poems into other social media without my permission. Thank you.

i see you, i love you, i miss you

dying with my mom

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Life & Living, Memories, Music, Videos

alex george fiddles “good-to-go” message from mom & universe

amazingsusan

The universe’s messengers come in all shapes, sizes, colours, forms, genders, and ages. They may be living beings, forces of nature, or inanimate objects. They could be deaf, dumb and blind, ten feet tall and/or incredibly small. Some dance. Some are as vast, and deep as the ocean. Others twinkle like the night sky.

I stumbled upon one playing the fiddle on his parents’ porch in Almonte, Ontario, on June 16, 2018, at about 4:15 p.m.

Actually, that’s not quite true. One rarely “stumbles upon” a messenger from the universe, although it may indeed feel random to either or both the messenger and the “messengee” if their intuition isn’t fully switched on. But the universe’s intentions are clear, and its delivery is unmistakably deliberate and obvious when one is paying attention, which I was, as usual.

I had planned to attend a prior PorchFest de Mississippi Mills session at 3 p.m., but I lay down for a 10-minute nap and overslept. I awoke just in time to make it to 17-year-old Alexander George’s performance, one of several taking place around town at 4 p.m., but I was delayed when I stopped to talk to a stranger along the way to Alex’s gig. He was playing on the porch of his family home, which, coincidentally, is five doors down and across the street from the little house I had just purchased two days before.

As I strolled past my new place, I wondered if I had made the right decision. Two weeks later, I would abandon Quebec’s Eastern Townships, where I had spent my childhood, and which had always been “home” no matter where I travelled in the world. Mom had lived in the big red brick house on the hill on the Georgeville Road for 40 years, and had died not far from it in August 2016. Will she know where to find me after I move? I was full of grief at the prospect of leaving her, even though she was already gone. I tried hard to release my sadness. Enjoy the afternoon. Don’t spoil it with dark thoughts. My positive self-talk produced mixed results.

Two young girls were selling muffins and lemonade beside the Georges’ house. I bought a drink, and gave them a .50-cent tip. Their eyes grew wide. “Thanks!” they said in unison. I meandered down onto the sloping lawn where people were gathered in small groups under the shade of trees and large bushes to take the edge off the heat. I sat down alone on the grass. Alex began to play what must have been the third or fourth song in his set. The Tennessee Waltz. Tears sprang to my eyes, and streamed down my cheeks. Had they known in advance they would be called into action? Luckily, a lady sitting not too far away had tissues.

I first heard The Tennessee Waltz when Eric played it for Mom one afternoon in early 2014. I fell in love with the tune on the spot. Mom knew all the words of course, and I learned them quickly enough. How many times had we sung it together? Dozens. She beautifully, and me badly. It was one of our favourites.

Two-thirds of the way through Alex’s captivating interpretation, I somehow found the presence of mind to pull out my iPhone and push record.

Here’s a full version from Alex’s first (and undoubtedly not his last!) album, just as he played it on the porch accompanied by piano:

More about the hugely talented Alex George here.

https://myalzheimersstory.com/2018/01/25/the-beautiful-tennessee-waltz/

https://myalzheimersstory.com/2016/11/27/do-you-see-what-i-see/

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Advocacy, Resources, Toward better care

what if everything we’ve been taught about dementia care is a lie?

amazingsusan

That’s what Dr. David Sheard asked himself in 1995, along with “What if people with dementia don’t have any behaviours?” and “What if we’re actually killing them?”

Based on the answers to those questions, he founded Dementia Care Matters and developed the Butterfly Household Model of Care, a framework that transforms the care home cultures and environments into ones in which people living with dementia can thrive instead of just die.

This Toronto Star video shows what that transformation looks like, and fills me with hope for the future:

More on the in-depth story entitled “The Fix,” by the Toronto Star’s Moira Walsh here.

https://myalzheimersstory.com/2018/05/24/5-ways-to-make-toast-in-long-term-dementia-care/

https://myalzheimersstory.com/2016/04/23/5-ways-we-rob-people-with-dementia-of-their-dignity/

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Resources, Tips, tools & skills, Toward better care

hot pink duct tape solves alzheimer seating issue

amazingsusan

Catherine Bixenman-salesi, who is a member of the online dementia support group USAgainstAlzheimers, is the primary care partner to her mom who lives with Alzheimer disease. Catherine regularly shares innovative, interesting and easy-to-implement “work arounds” to address the challenges she faces interacting with her mom.

I found this one to be particularly creative and practical; here’s a slightly edited version of what Catherine wrote in the support group update:

“I like to pass along tips I have figured out along the way; I hope others will find them helpful/useful.

I was having problems getting my mother to sit in her wheelchair. She just wouldn’t do it. Every time I would try to get her to sit, she’d have a panic attack and start screaming “no, I can’t!” while she grabbed my arms with an iron grip that caused them to be sore to the touch by the end of the day.

One evening I was sitting in the living room, looking at the wheelchair and wondering why she wouldn’t sit in it. Suddenly it occurred to me that her anxiety might be caused by the fact that the whole chair was black. “Maybe she can’t figure out where the seat is because the colour,” I thought to myself. Then I had an “Aha!” moment.

I found my daughter’s hot pink duct tape, tore off a three-inch strip, and stuck it dead center on the wheelchair seat. I thought if I used more, it would be too slippery, and as I wipe the cushion frequently, I also thought germs might adhere between the strips and the seat. Plus, a small square would be easier to remove/ replace.

I also found an old table leg and put some pink tape on the end of it. Now when I ask Mom to sit, I use the table leg as pointer. I tap the stick on the square of pink tape, and say, “Sit here, Mom.” Presto! She sits down pretty as you please. No more anxiety, no more struggle, no more sore arms!”

What a brilliant idea. Much better than saying a person is “resisting care,” or labeling her “combative” and then drugging her into compliance!

Thanks for being such a great dementia detective Catherine, for coming up with creative solutions like this one and for averting arguments by making your mom laugh. You are a care star!

turn potential dementia disasters into fun and laughter

10 ways to get to the bottom of behaviour and problematic situations in dementia care at home and in LTCFs

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