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”
This poem demanded to be heard after I listened to a long-ago telephone conversation with a familiar refrain:
“When are you coming home? I can’t wait to see you.”
Both dementia and life make us all want to go home in one way or another.
a poem by punkie
download the past
the die is cast
brave souls get torn apart
i hear your voice
there’s little choice
it echoes in my heart
come home you say
to laugh and play
create a brand new start
walk down the road
where love once flowed
see skies that look like art
we’ll pay the price
and roll the dice
believe in dreams sweet tart
before too long
forget the songs
whose ends aren’t ours to chart
some gods write plans
in shifting sands
and grant us small bit parts
yet still we give
these lives to live
our blood, our tears, our hearts
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
These pieces explore similar themes:
© Susan Macaulay 2013 – 2015. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.
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Joyful Albina Foisy is an overnight Internet sensation.
Her son Armand took a video of her playing in the snow. It went viral. I quoted her and shared that video here.
Then Armand took another video of Albina watching herself on TV.
It also went viral.
Here’s why: Continue reading “albina takes internet by storm with joy”
People who walk with people with dementia will tell you it is perhaps the most painful life work they have ever done.
For many fortunate care partners such as myself, it is also the most joyful, enriching and powerful life work we have ever done.
Yes, it is a rollercoaster of despair and joy, grief and grace.
And for those who find its gifts, it is also a blessing and a privilege — a journey of infinite tenderness, a profoundly human and deeply spiritual experience.
It liberates and empowers beyond measure. It is love in action.
It’s like this:
On June 16, 2015, Mom told me she was going to the creation. Fourteen months later, off she went,
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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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March 26, 2015.
I get Mom settled on the sofa.
“That’s going to be nice eh Sue?” She says. “Is it going to be nice the last one?”
“Yes, it will be,” I reply. Her words remind me there’s something important I want to say. I take her hands in mine. “Mom, I want to tell you something,” I begin. “Just in case something happens and I can’t come to see you, don’t worry about it OK? Her eyes lock on mine. All of sudden she is completely focussed.
“Oh,” she says low and quiet.
“It’s not because I don’t want to be here. Somebody might stop me from coming to see you,” I say.
“Is that right?” Here voice is even softer and lower now.
“Yeah.” I affirm.
“Like who?” She asks.
“I don’t know Mom,” I lie. “But I just wanted you to know that if it happens, if I don’t come, it’s not because I don’t want to.” My voice cracks. Tears threaten.
“No, I know,” she says. “I know. I know it’s not want to.” Bits and pieces get lost on the way from her brain to her mouth. But she has divine help getting her message across.
“I don’t want you to want the the the thing,” her words skip and stumble in a dementia rush. “You know…because it’s not my thing. And I don’t like things like that.”
“I know Mom,” I try to comfort her despite my fear and despair.
“I don’t like it like it…I I I I just don’t like it. Because it belongs to the the the the the…. It belongs to…. It belongs to the person it belongs to.” She’s hit the nail on the head. “And I remember that that remembrance. Near that person I have to… I feel that it’s right or wrong, you know. I don’t want it to be a wrong thing. It won’t change any way at all,” she continues. “It’s not going to change anything. Because it’s all, it’s all, it’s all the things. It’s the singing of everything.”
It’s the singing of everything. The totality is meant to be. There’s purpose behind the pain. Her wisdom sometimes blows my mind.
“I just wanted you to know Mom. I didn’t want you to be upset or anything,” I say.
Click on the player if you would like to hear the full unedited audio version of the conversation. It’s about eleven minutes long.
“No, I didn’t want to be upset. You know that,” she says.
“I know but I wanted to tell you in case you don’t see me that it’s not because I didn’t want to come Mom,” I repeat. I know in her core she will understand why if I never see her again in this life.
“We know that Sue. We all know that.” Her voice is firm and strong. It gives me hope.
“So we have to make the most of the time we have together, Mom.” I squeeze her hands a little for emphasis.
“That’s right. That’s right. We have to get the silver sign. And that’s got to be signature. That’s it,” she says.
“Yes,” I say.
I’m glad I’ve told her. As crazy as it may sound, she knows stuff, even though she has trouble articulating the depth of her understanding. She knows.
“You’ve been out running the roads this morning,” she observed the other day.
“You’re right Mom. I have been. I had to do some shopping,” I laughed. “How did you know? How do you know these things you have no way of knowing?”
She looked me straight in the eye and spoke her truth: “The Lord tells me,” she said.
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Image copyright: gelpi / 123RF Stock Photo
I wrote this poem in March 2015, shortly after my visiting “privileges” at the dementia jail in which my mother resided were restricted to between 1 and 3 p.m. in the afternoon to punish me for advocating on her behalf. I was threatened with not being able to see her at all if I didn’t obey the rules. Several months prior to that, under the same threat, I had been forced to remove more than 200 blog posts that mentioned her any way. I wasn’t allowed to say her name in my workshops or presentations, or to show any photographs of her without the written approval of the person who was in legal control of her care, the state of which had been rife with neglect and abuse for 10 years.
©2015 punkie (aka Susan Macaulay)
by punkie
sun stars ’n moon
in a silver spoon,
don’t care if I die.
my body aches,
my heart mistakes
chaos for my insides.
battered and broken,
words unspoken,
seek yet don’t find sky.
dark poetry flows
as a gale force blows,
is it truth, a dare or a lie?
the time will come,
all’s said. it’s done.
one soul alone will fly.
when love eludes me,
life excludes me,
hush now, don’t you cry.
©2015 Susan Macaulay. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.
I’m not a religious person. Not at all.
But I try to find purpose in pain and suffering because needless pain and suffering seem like such a waste.
If we must suffer, and it certainly seems we must, surely there must be a reason…?
Maybe god(s) know what it is…? I definitely don’t!
I see people with dementia every day, and every day a little piece of my heart cracks or breaks.
I’m not alone.
In fact, I’m in excellent company.
August 24, 2012: Mom says her prayers every night, and having her prayer beads wrapped around her fingers is a huge comfort for her.
“Where are my beads?” She asks after I pull the quilt up around her chin. I keep them close on her bedside table, so they are always within easy reach.
“Here they are Mom,” I scoop them off the pine table top and let them cascade into her open palm. I am inspired to write a poem about this and other Alzheimer’s rituals:
An Endless Prayer
She has fat little fingers now.
Her precious rings don’t fit them anymore.
At night, she counts her rosary:
one bead after another after another after another.
In the day, she sits and strokes the tops of her legs:
up and down up and down up and down.
Her hands, like the days and the nights are
soft, gentle tides going in and out in and out in and out on a desert island.
I wonder what she feels as she comforts herself and gazes,
seemingly lost, into the near and far.
She turns, touches my arm.
“Hi Punkie, I’m so glad you came to see me,” she says.
My heart is in a million pieces.
My Alzheimer's Story 