Tag: mind

Care Partnering, Family, Inspiration, Life & Living

the little things are actually everything

My Alzheimer's Story

You know how some people just seem to have something special about them? Something that makes you smile and feel good? The Cole/Croft family is like that. They make people happy by sharing their stories of love and gratitude.

When Sophie and Olen Croft welcomed son Joseph into the world in October 2016, they weren’t sure what kind of role Lisa Croft, Olen’s mother and Sophie’s mother-in-law, might play in Joseph’s life. Lisa, who was 54 when Joseph was born, lives with frontotemporal dementia (FTD). But it turns out things are going just fine as Sophie Croft shares in this uplifting message about spending time with Lisa, Joseph and Olen:

The little things? The little moments? They aren’t so little.

Today, we checked the mail 10 times, even though it’s Sunday, and there’s no mail delivery on Sundays. Seeing Lisa pushing her grandson up and down the driveway with such a big smile makes my heart melt. People take things for granted, like a grandparent loving their grandbaby. For us, it’s not that simple.

Lisa knows that Joseph is her grandson and she is his grandma, but she has a different bond with him. She doesn’t get to babysit. She doesn’t get to really watch him grow. She doesn’t get to be the grandma everyone else does.

Joseph and Lisa Croft on their way to collect the Sunday mail.

But Lisa loves Joseph more than anything, she plays with him, even if it’s for a minute at a time, she talks to him, she calms him down, she spoils him with kisses. I would do anything for Lisa to be “herself” again, but since I can’t do that, I will cherish every second with her, and take photos, and laugh at the craziness. I will check the mail 10 times more, if that means I get to see her smile.

Never take anyone to granted. And always remember, the little moments, they aren’t so little.

Read more about Lisa and one of her best friends Alice Cole, who is Sophie’s sister here. Alice’s words are accompanied by joyful pics of her and her BFF. You’ll be grateful you clicked on the link.

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Life & Living, Poetry

open windows by rozanne baker

My Alzheimer's Story

 

A beautiful poem by Rozanne Baker of Amanzimtoti, South Africa. Rozanne, who cares for her mother of 90+ years who lives with dementia in a long-term care facility, sent me this poem out of the blue. I struck a chord with me.

Open Windows

by Rozanne Baker

The home seems deserted.
Silence fills the air.
Who knows what, or when.
Who knows why, or where.

The blinds are drawn.
The curtains closed.
What’s happening inside…
No-one knows.

And then the window opens…
For how long…
No-one knows.
To the people looking in,
it’s like the beauty of a rose.

A glimmer of light is shining,
from the darkness deep within.
A spark of recognition
and the faintest little grin.

“So nice to see you”.
“Thanks for coming by”.
These words are like a rainbow,
lighting up the sky.

And in the very moment
of waiting to reply,
the shutters close as silently
as rainclouds drifting by.

Back in to another world,
that’s far beyond our reach.
Like never-ending waves,
that wash up on the beach.

We’ll have to wait again,
to see what comes and goes.
For the windows to re-open,
For how long…
No-one knows.

©2017 Rozanne Baker
Amanzimtoti, South Africa

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Copyright: velirina / 123RF Stock Photo

Care Partnering, Family, Inspiration, Life & Living

what 18-year-old alice wants you to know about being a dementia care partner

My Alzheimer's Story

 

I came across the letter below in one of the dementia care groups I belong to on Facebook. I’m sharing it with the permission of Alice Cole, the amazing young woman who wrote it. There’s more information about Alice and her family at the bottom of the post.

May 2016

Dear dementia care partners everywhere,

My name is Alice. I’m eighteen years old. This month, I will graduate from high school. I have a full-time job, and I’m also a part-time care partner to my best friend Lisa. This is me being happy about getting accepted into the nursing program at University of Alabama:

Alice Cole UAB nursing student cropped

This is my best friend Lisa. She is 53. She is beautiful. She is my sister’s mother-in-law. She has three kids. She also has frontotemporal (FTD) dementia.

Lisa w bunny 1 cropped

I want to share our story with you.

I met Lisa two years ago. At the time, I knew nothing about the dementia. I just knew that this sweet, loving mother of three was deteriorating fast. Lisa has had symptoms for four years, and she was diagnosed with FTD about a year ago. Since then, the disease has taken a toll on her, and Lisa and I have become closer and closer.

After she was diagnosed, Lisa began taking long walks. She would walk miles and miles down a dangerous country road. She would go to her parents’ house or her son’s house, even if nobody was home. Today, Lisa requires 24/7 care. She has little control over her bladder. She repeats the same things over and over again (even things that are untrue). She doesn’t need help to feed herself, but she can’t order for herself in a restaurant or ask for what she wants at home. It’s like somebody took her brain, and swapped it with that of a toddler.

Lisa’s husband Roy and his daughter Sheena (who lives with Roy and Lisa) both have full time jobs. That means Lisa needs someone to care for her when they aren’t there. For the past six months, I have been one of Lisa’s care partners. I spend about eight hours with this lovely woman every Monday, Thursday and Friday. We do all kinds of things together. We walk, go shopping, visit interesting places, play with our pets, spend time with family and friends and just have fun being silly.

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I have maintained decent grades, worked another great job to help pay for my schooling, and have learned so many things from being a care partner with Lisa. Hours of helping her bathe and going to long, difficult doctors’ appointments are not the life of a typical teenager. I have given up a lot for Lisa. And I don’t regret it one bit! It’s hard going out in public and having people laugh because I hold her hand and help her make choices. Lisa makes me laugh and cry (happy and sad tears) many times every day we’re together. She is my best friend. She has made such a big impact on my life. I would not change any of it for the world. I hope one day I will be a great mother like she was and still is. I hope one day we will find a cure for dementia. I love Lisa more than words can say.

I wanted to share my story about being a part-time dementia care partner at the young age of eighteen, and to introduce you to my best friend Lisa. I hope the pictures of Lisa and me make you smile. I am so blessed to be able to spend so much time with her.

Praying for all those affected by dementia.

Alice Cole

 

Positive approach to dementia care pioneer Teepa Snow says as many as four in five families impacted by dementia fall apart as a direct result of the disease. My family is one of those sad statistics. But the Coles and Crofts are an exception to the rule. They are an example of the one in five families who pull together instead of collapsing into bitterness, despair and disputes.

As Lisa Croft’s FTD progressed, caring for her in the best way possible became too much for her husband Roy, and his daughter Sheena to handle alone. Lisa’s son Olen and his wife Sophie (pregnant with the couple’s first child), and Sophie’s sister Alice, who wrote the letter above, stepped up to the plate.

“Lisa lives with Roy,” says daughter-in-law Sophie Croft. “And while Roy is at work, Alice, myself and Roy’s daughter Sheena care of Lisa, depending on who is off work.” Together, the members of the Cole-Croft family circle embrace Lisa to ensure she is never left alone, that she is engaged in life-affirming activities and that she is loved, cherished and cared for in the way she deserves to be.

Thank you Alice for your inspiring letter, and thanks to the members of the Cole-Croft family for being an example to the rest of us. God bless you.

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Family, Memories, Tips, tools & skills, Videos

what if life were a ball of yarn?

My Alzheimer's Story

what if life was a ball of yarn cropped

 

What would your world be like if you experienced time as a sphere instead of as linear sequence of events? What if past, present and future all existed at once and any given event or time could potentially be right next to any other event or time? What would that be like?

I think people who live with dementia sometimes experience life in this way in the early and mid stages of the disease. I believe that for them, time and memory exist more like a sphere than a straight line.

They often seem confused, disoriented and befuddled. Their thoughts and memories may seem random and disorganized. They may appear to be simultaneously “here,” and yet strangely not. They sometimes behave in ways that appear to those around them to be irrational or illogical.

“You’re not my daughter Peggy,” Peggy’s mom says to her 50-year-old daughter Peggy who is standing in front of her. “You’re not my daughter, my daughter is a young girl.”

Or, “Isn’t it strange?” Marcia’s mom might say one evening as they sit in the living room of their family home of forty years. “Isn’t it strange how all of this furniture and the pictures on the wall look exactly like ours, but we are somewhere else? Isn’t it odd that this place is identical to our home, but it’s not?”

This may feel uncomfortable for everybody – the people who live with dementia as well as those around them. We generally feel more at ease with the illusion of predictability; being outside of our known boxes makes most of us feel twitchy.

I have a way of thinking about this, my own framework, that helps me understand how an Alzheimer’s mind might be experiencing time and memory, and to remain calm and accepting when I communicate with people who live with the disease. I use the framework as a tool for understanding how their world might feel.

Before I explain, here are the disclaimers about my framework; it is:

  • a product of my imagination
  • an over-simplified way of understanding very complex processes
  • not based on physiology
  • not scientific in any way
  • not grounded in any reality of which I’m aware

That said, here are the thoughts behind my “ball of yarn” theory:

People who don’t have a brain disease that results in dementia experience time in a linear way. Events happen in sequence, one after the other. We live in a world of past, present and future; yesterday, today and tomorrow. Time is chronological – much like a piece of yarn as it is pulled from a ball.

But what if we took the yarn of our lifetime and cut it up into millions of tiny pieces and then reformed all of those formerly sequential pieces into a ball? Any piece could theoretically be next to any other piece. And what if the pieces constantly became unstuck from each other and we kept reforming them into new balls? Any given piece of time and space could theoretically, randomly and momentarily become stuck to any other piece of time and space in any given new ball.

This is how I imagine memories might manifest in the minds of some people who live with dementia of the Alzheimer’s type: a childhood event might sit right next to today’s lunch one moment and then be beside something completely different the next. (For an interesting additional take,see Michael’s comment below.)

Here’s the video version of my ball of yarn model:

 

Anyone can use this perspective and other positive approaches to reframe situations that may cause upset such as when people who live with dementia do not recognize their loved ones.

Care partner Diana Ferguson Henderson shared this brilliant example with another care partner who was distraught when her mom didn’t recognize her:

“My brother and I are going through the same thing,” Henderson wrote. “Mom will call me by name one minute, and ask me who I am the next. When I tell her I’m her daughter Diana, she says ‘you can’t be because she’s slim and graceful.’ And I say: ‘yes I was, but now I’m fat and sassy!’ Then we laugh and move on.”

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Copyright: coprid / 123RF Stock Photo

Life & Living, Memories, Poetry

Two Mothers Remembered by Joann Snow Duncanson

My Alzheimer's Story

I love this beautiful poem by Joann Snow Duncanson.

It’s at once tender and loving, sad and joyful, grateful and hopeful.  Mothers and daughters worldwide who live with dementia every day know the truth in these words captured so eloquently in just six stanzas.

Thank you Joann Snow Duncanson, for living the journey with your mother and for sharing it with us in this beautiful piece of poetry. We too are one.

 

Two Mothers Remembered

by Joann Snow Duncanson

I had two mothers – two mothers I claim,
two different people, yet with the same name.
Two separate women, diverse by design,
but I loved them both because they were mine.

The first was the mother who carried me here,
gave birth and nurtured and launched my career.
She was the one whose features I bear,
complete with the facial expressions I wear.

She gave her love, which follows me yet,
along with examples in life that she set.
As I got older, she somehow younger grew,
and we’d laugh as just mothers and daughters do.

But then came the time that her mind clouded so,
and I sensed that the mother I knew would soon go.
So quickly she changed and turned into the other,
a stranger dressed in the clothes of my mother.

Oh, she looked the same, at least at arms length,
but now she was the child and I was her strength.
We’d come full circle, we women three,
my mother the first, the second and me.

And if my own children should come to a day,
when a new mother comes and the old goes away,
I’d ask of them nothing that I didn’t do.
Love both of your mothers as both have loved you.

https://myalzheimersstory.com/2016/04/27/we-too-are-one/

https://myalzheimersstory.com/2017/05/01/an-alzheimer-parents-poem/

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Life & Living, Memories, Poetry

torn corners & confetti (ii)

My Alzheimer's Story

It wouldn’t work. It was clear after I got the email notification of the first posting of the first stanza of torn corners & confetti that tweaking was required.

The whole stanza was reproduced in the email, and it didn’t look at all like it should. It was chunky and clunky and just plain ugly. Written poetry is meant to be seen as well as read. Spoken poetry is meant to be heard. Form is important either way. What to do?

Idea: explain some of the creative process that went into the poem with each of the seven remaining stanzas? Worth a try. torn corners & confetti grew out of A Room in Antwerp by Laure-Anne Bosselaar; you will find that poem here. More next time.

Here’s torn corners & confetti (ii): Continue reading “torn corners & confetti (ii)” →