Spirituality – My Alzheimer's Story

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

February 25, 2018September 15, 2018 My Alzheimer's Story

In the three short videos below palliative care physician Dr. Mike Harlos gives advice aimed at other palliative care doctors and nurses. He talks about how to communicate with family members as someone they love approaches death.

But I think there’s something for all of us learn from his gentle wisdom on how to interact with those who find themselves at the side of someone they love as that person dies. It also struck me that what Dr. Harlos says applies equally to people who live with dementia who many others think are “gone” long before the actually are.

In these three short videos (each is less than three minutes long), Dr. Harlos shares simple pieces of practical advice with respect to communication:

Assume they can hear you
Take it out of the room
Make space for final conversations

I invite you to watch and listen, and hope you will be as deeply touched by Dr. Harlos’s words as I was/am. Just listening to his voice at once calmed me, and brought me to tears. As I watched the videos, I felt as if I were in the presence of an angel, albeit an earthbound one for the moment. I might have made the experience of dying with my mom more beautiful and meaningful had I been exposed to the Canadian Virtual Hospice before her death instead of after.

I wrote a poem about my final moments with my mom; it’s here.

https://myalzheimersstory.com/2018/04/27/understanding-the-suffering-associated-with-dying/

https://myalzheimersstory.com/2016/08/20/dying-with-my-mom/

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Image copyright: bialasiewicz / 123RF Stock Photo

Advocacy, Life & Living, Spirituality, Toward better care

rethinking the pathological myth of normal

August 1, 2016June 10, 2019 My Alzheimer's Story

I’ve never done well in the boxes society and others wish to confine me. I like to colour outside the lines. I hate rules and policies. I’m a true Aquarian: independent, unconventional and thirsty for knowledge and discovery. That may be why I have found it relatively easy to understand and accept the behavioural expressions of people who live with dementia as “normal,” and to embrace the work of innovative thinkers such as Dr. Gabor Maté.

In Maté’s view, normalcy is a continuum on which we all exhibit traits and behaviour that have traditionally been labeled as “normal” and “abnormal.” Behaviour, he says is “contextual and cultural. Disease is not an isolated phenomenon of the individual, it’s a culturally constructed paradigm.”

I would suggest that part of the stigma associated with Alzheimer’s disease and other dementias arises from the limited ways in which arbitrarily define what “normal” is. Expanding our universe to create space for behaviour to which we may not be accustomed, but which is not inherently better or worse than what culture specifies, will, I think, result in a more inclusive, rich and diverse world.

I also love Maté’s take on the impact our materialistic society has on the way we value, or more to the point, devalue the elderly and other who don’t feed into the production/consumption frenzy on which western society has increasingly come to manifest.

“What we value is not who people are, but what they produce or what they consume,” Maté says. “And the people who neither consume nor produce are ostracized, shunted aside and totally devalued. Hence the rejection of old people, because they no longer produce and they’re not rich enough to consume a lot either. So the very nature of this materialistic society dictates or generates and promotes the separation that from ourselves.”

I suggest it also separates us from each other. Food for thought.

https://myalzheimersstory.com/2017/11/25/101-potential-causes-of-behaviours-by-people-living-with-dementia-that-institutional-care-staff-may-find-challenging/

https://myalzheimersstory.com/2017/06/01/4-minute-survey-results-debunk-decades-long-notion-that-bpsds-are-symptoms-of-dementia/

https://myalzheimersstory.com/2017/06/20/the-demented-system/

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Image Copyright: Prometeus / 123RF Stock Photo

Life & Living, Poetry, Spirituality

7 poems to share because they’re there

January 19, 2016June 21, 2017 My Alzheimer's Story

I write because I must. But not always about my journey as a dementia care partner or to advocated for better care. Sometimes I write about other aspects of my life, and sometimes that writing takes the form of poetry, which I first began experimenting with in late 2012.

Here are links to seven pieces posted on my personal blog amazing susan, which I invite you to follow if you find it of interest.

Enjoy!
Continue reading “7 poems to share because they’re there” →

Spirituality

a visit with the book of revelation

June 17, 2015June 17, 2019 My Alzheimer's Story

On June 16, 2015, Mom told me she was going to the creation. Fourteen months later, off she went,

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

June 16, 2015: Communicating with someone with Alzheimer’s dementia can be frustrating. It can also be enriching, entertaining, and even educational.

Whatever Mom says, I try to go with her flow, improvise, and let things evolve as they will. I’m often amazed at her ability to articulate her thoughts despite her aphasia and the obvious challenges she faces when trying to get her ideas across.

It’s hard to know when she tells me stories whether she’s talking about the past, the present, or the future. Nevertheless, I experience many of our talks as her sharing a kind of intuitive wisdom I feel has emerged in her as her dementia has progressed. Yesterday when I arrived to visit she told me she was going “to the creation.” That blew my mind. “That’s a good place to go,” I replied as I rescued her from the recliner in which she was trapped. We got organized, and I wheeled her downstairs for tea. After our ritual walk across the room and back, we had another amazing conversation that went something like this:

“It’ll be all right once we get going, because I can tell them,” she said as she shuffled.

“Yes you can,” I agreed. We’re edging up to her wheelchair now. “Are you almost ready to sit down?”

“Almost.” We get to the chair and I maneuver her into place in front of it.

“You can sit down now mom.The chair’s right behind you.”

“Okay dear.” She sinks down gently. I roll her forward toward the sofa where I sit down facing her. We’re close enough for our knees to touch. I take her hands in mine. “Okay, we’ll get right down to what were going to do,” she says. “Because I don’t want to sit and fiddle around with those people.”

“I know you don’t.”

“I I I I’m ready to give them a…..a…a…” She takes an aphasia break.

“To give them what Mom?”

“Well to give them a little rah…rah…rah…rah…rel…rel…rel…rel…rel… revelation.”

“Revelation?” She surprises me virtually every day with something. Today, it’s her use of a multisyllabic word chock-a-block with meaning.

“Yeah. And I know what I can give them and that’s that. And that’ll be what’ll be given to them.”

“Yes it will be Mom.” I look into her eyes. She looks straight back at me. I think of the book I’m writing, and I can’t believe we’re having this conversation. More dementia intuitive clairvoyance. “It’s going to take some time Mom,” I say. “But I’m working on it.”

“Okay,” she approves. “I don’t want you to work too much on it. But I want to give the revelation. Because you can’t deal with these people you know.”

“Yes, I know that. Do you have any more advice for me Mom?”

“No, other than the, the, the, the, than, than, the, the, I don’t seem to have any more of the real rah…rah…rah…rah…re…re…re…re…revelation. I think we’re fine.”

I ask her how she feels about me telling the story. “Fine,” she says, and then she continues: “I told them, I said ‘Listen, I said, you you you you you you you made it a little bit difficult for me so you can you can you can spend up the things. You’ve got to, you’ve got to play the games with these people, because otherwise they don’t know what they’re doing you know.”

As far as I recollected, I’d never heard Mom use the word “revelation,” and if she ever had, surely not in the last several years. When I got home, I googled it. What I found knocked me for a bit of a loop. According to Wikipedia, revelation is “the revealing or disclosing of some form of truth or knowledge through communication with a deity or other supernatural entity or entities.” Dictionary.com defines it as “something revealed or disclosed, especially a striking disclosure, as of something not before realized.”

Next I visited the Wikipedia entry for the Book of Revelation which was a revelation in itself — all about apocalypse, prophecy, persecution, dragons and pregnant women dressed in the sun, the moon and the stars and much more. Powerful stuff.

What could I do? I was compelled to write this blog post before returning to my own book of revelation.

https://myalzheimersstory.com/2016/01/09/some-gods-write-plans/

https://myalzheimersstory.com/2015/11/16/joys-and-tears-these-last-three-years/

https://myalzheimersstory.com/2014/03/04/alzheimers-alphabet-soup-is-a-sentence/

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Care Partnering, Death & Dying, Life & Living, Love

this is what love sounds like

August 2, 2014September 30, 2019 My Alzheimer's Story

July 27, 2014: It’s been a tough day, and it’s not my intention to bring Mom to my place for dinner but that’s where we end up.

As we eat, there’s an unexpected break in the clouds. She searches for words. I watch her, wait out the long pauses, count my heartbeats. Pieces of gobbledegook interlock to form a demented jigsaw puzzle. I decode and interpret. Images take shape. A deep and meaningful conversation ensues. It’s emotional and revealing. I’m reminded to remember she’s still here even though mostly it may appear she’s not. I’m grateful I began recording our conversations several years ago as way of remembering our journey. After dinner I take her to “the peeps.”

Once that piece of business is done, she closes her eyes so I can remove a bit of who-knows-what that’s stuck to a bottom lash. When I ask her to open them again I look into her soul without knowing it. “Hello,” we say to each other like we’ve just met, forgetting we’ve spent the last several hours and two entire lifetimes together. That’s one a kind of cool thing about Alzheimer – you can start with a clean slate pretty much anytime. I ask her if she’s ready to go.

“I think so, soon,” she says.

“Okay good,” I say. “Let’s head out that way.”

“Are you going to be alright going out?” she asks.

“Yes, I’m going to be alright,” I’m confident. “Are you going to be alright?”

“I don’t know what I’ll be doing.” She’s honest.

“Then let’s hold hands.”

We shuffle our way out of the bathroom and the bedroom and into the hall on our way to the ramp and the car. She ambushes me at the front entrance. I’m on the outside, having already stepped over the threshold. She’s on the inside about to cross when she stops in her tracks and starts to talk. I don’t know why I pause and ask her to elaborate. Maybe it’s the tone of her voice. Perhaps it’s intuition. Whatever the reason, I stand there frozen in a surreal time and place, my hands in hers, my right foot wedged under the screen door to hold it open. In a couple of minutes it will start to rain. In the meantime, I’m amazed by her words and mine and by what love sounds like. My heart cracks open about half way through: