Friday March 20, 2020: To say these are challenging times is a massive understatement. But we have all been through challenging times, as individuals, as communities, as nations.
Yet, so far, we have managed to survive as individuals, and as a species. We have what it takes to get through seemingly impossible challenges, especially when we work together.
We can make it through this pandemic. Dementia care partners worldwide know we can, because we’ve learned how to deal with stuff like this. It’s part of the territory. Yes, there will be seemingly unbearable loss and grief. But those too are part of the territory. Part of being human.
20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia
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January 25, 2019: I struggle between my twin needs for solitude and connection. Today, I missed a loving touch, and felt a little lonely. So I did something I haven’t done in a long time: I opened the file of archived audio recordings I have from when Mom was in #DementiaJail, and randomly picked 2016, the year she died. Today’s date was near the top of the list.
My visitation “privileges” had been confined to between 1 and 3 p.m. for almost a year at that point, and most days Mom was “asleep” (i.e. sedated) during the time I was allowed to see her. I would sit by her side, and hold her hand, helpless and furious about the situation in which we were so cruelly confined.
I clicked on the January 25th file, and listened. What I heard filled me with sadness, joy, grief and hope. I was extremely touched by the first few minutes of our conversation, which to me clearly demonstrate that people living with Alzheimer disease want and need to remain closely connected in relationship with those around them, particularly those they love.
Here’s a clip (which to me says it all), from the start of my ninety-minute visit with Mom that day three years ago (transcript below if you want to read while you listen)
Transcript
Susan: Patty? Patty? Hello!
Mom: Hello.
Susan: How are you?
Mom: How are you?
S: I’m very well. How are you?
M: Fine.
S: Good.
Yeah.
S: I’m happy to see you.
Yeah.
S: Hi.
Hi. (A long pause) I…I…I like seeing you.
S: I like seeing you too Mom, very much.
Yeah.
S: I like seeing you very much Mom. We still have fun together.
You have eh?
S: Yeah, we do.
Well that’s kinda nice eh?
S: It is kinda nice, Mom.
Yep.
S: it’s very nice.
Yep.
S: We’re lucky that way.
Yeah.
S: Not everyone is as lucky as us.
Nope.
(in an incredible moment of synchronicity I go to turn down the volume on the TV, and a voice on the talkshow that’s on says something like:
“…and it was a real gift to be able to say how much he brought to her life, and how much she loved him and what an honour it was to care for him when he got sick, and that was really beautiful to me, and I think one other is one other thing i would say is funerals are for the living so it’s so important to tell the people you love how you feel about them before they depart, don’t say it at the funeral when they can’t hear you.)
S: Mom?
Yeah.
S: Would you like to go down and have some tea with me?
Yeah, I would. I would. It would be nice.
S: Okay. Shall we do it then? Let’s do it. I’m going to lift your chair up okay? I’ll get your other chair first. (I get the wheelchair) Okay Mom. Patty?
Yeah.
S: I’m going to move this chair so you can stand up okay?
Yeah. You’ll like that eh Sue?
S: I do. I like to spend time with you.
Yeah, well…. I like to spend time with you.
S: I know you do ‘cause I’m fun (I laugh).
(Mom laughs) you…you…you…have fun.
S: …and we joke around together…
Yeah
S: …and we do some spelling…
Yeah.
S: …and you are an excellent speller…
Yeah.
S: …you can spell every word in the dictionary
Yeah, it would be fun wouldn’t it?
S: It would be fun, Mom,
Yeah.
S: …and then we do some singing…
Yeah, that would be nice.
S: How are you feeling today?
I feel good today.
S: That’s good. Were you having a little rest?
Yeah, we were having a little rest, but it was a nice rest.
S: Good. I just need you to lift your bum up a bit Mom.
It’s nice though, it’s nice.
S: Lift your bum up Mom. Again. (As I free Mom from the various “bells and whistles” that are attached to her so I can move her from the recliner to the wheelchair, they begin to sound their respective alarms. “Oh shut up!” I scold the bells and whistles in frustration)
Oh yeah, well you…
S: That thing drives me nuts Mom. It drives me crazy.
Well, it drives me crazy too.
S: It drives you crazy too?
Yeah. I don’t blame you.
S: What about it drives you crazy? That sound?
Yeah.
S: Me too. Are you ready to stand up?
Yeah I’m ready to stand up.
S: Okay good. We’re going to transfer over to this chair okay?
Yeah, well it is a chair.
S: It is a chair. I’ll put your feet a little bit over like this…okay, ready?
Yeah.
S: One, two, three, stand up, Mom. Excellent. You stood up easily Mom.
Yeah, it’s true.
S: It is true. Can you take a step?
Oh yeah, sure I could.
S: Okay good. Hey, you’re doing well. Keep coming. Okay, I’m going to turn you around over into this chair, Mom. How’s that? (She sits in the wheelchair)
Oh it’s lovely. It’s nice over there.
S: It’s gorgeous. Do you need to go to the bathroom?
No, I like to go to the bathroom though.
S: The peeps? Should we go the tea first and peeps after?
Yeah that would be nice.
S: Okay, let’s do that then. Yesterday when I came you were asleep, Mom.
Oh no. I was a asleep?
S: Yeah, you were sound asleep.
No.
S: Yeah, but you’re awake today.
Maybe I’ll be awake today and another day (Mom claps her hands)
S: Good clapping. Clapping on your…?
Gapping!
S: Yes.
What can you spell today? Can you spell clock?
C-L-O-C-K.
S: Yes!
C-L-O-C-Kay on your little pay.
S: Yeah. (I laugh)
Oh, It’s fun to go over there.
S: Yeah. And it’s fun to do spelling. We’ll do some more downstairs.
Yeah, that’s fun….
~~~~~~~~~~~~
I miss connecting with Mom in this physical plane. I’m glad I have these conversations to reflect back on. I’m grateful I said “I love you” to her just about every day for the last four years of her life. Lucky us ❤
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No, it’s not a typo. The headline does indeed read Asperger Syndrome and not Alzheimer Disease. And no, the focus of this blog is not changing — this post is a bit of an anomaly.
Lilly*, one of the first and most loyal followers of MyAlzheimersStory.com is an “Aspie.” When I recently befriended someone who, like Lilly, was diagnosed with autism spectrum disorder (ASD or Asperger’s syndrome) later in life (i.e. in his forties), I wanted to know more about the condition so I could be as supportive of my new friend as possible. Understanding is key to communication, and, as we had been collaborating on a project, I felt the more I knew about being an Aspie, the better I would be able to engage him, and the more successful our work together would be. Sadly, the project will now never see the light of day.
Remarkably, as I dug into the information, I recognized the signs of high-functioning ASD in myself, and realized I might easily be considered on the edge of the high functioning end of the spectrum.
When I shared this with Lilly on Messenger, she quickly replied:
“I too believe you could be, you have many high-functioning characteristics, and you troubleshoot with different skill set than “non neurodiverse”, from my observation over the past few years.”
I began my research by revisiting Temple Grandin‘s TED201O talk The World Needs All Kind of Minds, which I had found fascinating when it was first released, and which delivered additional insights on second viewing. Grandin lives with autism, has a doctorate, and is one of the top scientists in the humane livestock handling industry; a highly rated 2010 movie about her life, starring Clare Danes, won a Golden Globe award. She is also the co-author of this groundbreaking book: The Autistic Brain: Thinking Across the Spectrum.
Here is her 2010 TED talk:
This short CNN piece combines live interview with clips from the movie:
I found one of the best “basics” articles on the Autism Speaks Canada website. The article points out that “Asperger syndrome often remains undiagnosed until a child or adult begins to have serious difficulties in school, the workplace or their personal lives. Diagnosis tends to center primarily on difficulties with social interactions.” Other information I found suggests marital issues are frequently among the diagnosis drivers. This excellent Psychology Today article outlines a number of specific, practical strategies that may help get and/or keep a marriage with an Aspie on track. This one in particular struck me:
“Understanding that [Asperger Syndrome] is a biologically-based, neurological difference vs. a psychological mental disorder is key. Learning about [Asperger Syndrome] is important to sort through what challenges are [Asperger Syndrome] based and what are just regular marriage issues. Books, movies, articles, and seminars can help the both partners better understand [Asperger]. Due to its complex nature, learning about [Asperger Syndrome] is lifelong.”
People with Alzheimer Disease are often stigmatized and seen as “less than” or deficient in some way. I wrote a poem to help change that mindset. Aspies are similarly stigmatized, and often told there’s something “wrong” with them. There’s nothing wrong with people who are different. They are simply different. So I also wrote a poem about what it might be like for an Aspie to be labeled and stigmatized, from an Aspie perspective. Not surprisingly, I seem to have a pretty good grip on that.
Doing this research was helpful and enlightening for me. I hope it is for you too.
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This Stephen Colbert bit is about the opioid crisis. But it could equally be about the polypharmacy crisis in older adults. Or the antipsychotic and psychotropic crisis in long-term care facilities. It’s all one and the same issue. #BIGpharma #bigMONEY
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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.
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)
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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.
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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.
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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!” 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.
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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.”
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This piece of poetic prose called “Music” is from a collection entitled “A Tapestry of Shared Moments In Long-Term Care” by former Registered Nurse Karen Hirst.
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A sea of wheelchairs, walkers, easy chairs, an encasement of human form. Having been herded towards this place, they await their cue to rise and move towards their place at the supper table. Silence reigns within this place of mealtime ritual. Eyes stare out from emotionless faces, a spirit of uniqueness noticeably absent. Instead a sameness of scars from shared diseases they bear within. An aura of premature death hangs heavy.
Music starts. Irish fiddles, sing-a long favorites, dance band melodies of eras past and something changes.
Subtle at first….ears pulled alert, eyes that move between faces searching within the emptiness of this space for the source of a new sound. Very slightly at first, an uncontrollable drawing upwards of lips curling into a smile, a finger tapping out the beat on the arms of a walker, a toe exercising its remembered swirl on the dance floor, a hand and arm finding air beneath them as they take on the job of conducting the orchestra. Within supportive arms, each beat of music finds its expression through feeble legs as partners share their dance moves among the feet of encouraging onlookers.
The silence is broken. One is heard to speak words of praise for the dancers, one speaks directly to their neighbor of how nice it all is, one giggles, one remembers that they used to be a good dancer, played in a band, or sang in a choir. They all clap in united support for the bravery and prowess on the dance floor and unabashedly sing out the verses of remembered tunes.
Something has change within this space. No longer the collective herd but a gathering of individuals united in their love of the beat and tune. No longer spiritless forms but animated motion and activity radiating through the unique expression of their joy. No longer alone but connected through the universal language of music. No longer death but evidence of life finding its way to the surface, spreading out into this space and time.
The life giving force of music. Joy stirred by rhythm. Burdens lightened. Steps lifted higher with every beat. Memories surfacing of loved ones, of times spent together when the language spoken was understood by everyone.
Karen Hirst is a former Registered Nurse, who worked primarily in the field of geriatric nursing. She began her career as a Health Care Aide Instructor and held positions of increasing responsibility over several decades. She spent her final 16 years as a charge nurse at Fairview Manor, Almonte, Ontario. Now retired, Hirst writes on topics that interest her, and is actively involved in her community. This piece is from a collection entitled “A Tapestry of Shared Moments In Long Term Care.”
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It may seem like this post has nothing to do with dementia care advocacy, but it does, trust me. All will be revealed in the fullness of time…
In the meantime, enjoy former astronaut turned author and inspirational speaker Commander Chris Hadfield (on guitar & vocals) as he covers Piano Man with family physician Dr. Jeff Dresselhuis (on keyboards) and the #CMASummit2018 “jam band.”
Karen Hirst is a former Registered Nurse, who worked primarily in the field of geriatric nursing. She began her career as a Health Care Aide Instructor and held positions of increasing responsibility over several decades. She spent her final 16 years as a charge nurse at Fairview Manor, Almonte, Ontario. Now retired, Hirst writes on topics that interest her, and is actively involved in her community. This piece is from a collection entitled “A Tapestry of Shared Moments In Long Term Care.”
My Alzheimer's Story 