Death & Dying, Life & Living, Love, Videos

i know where to find her

February 11, 2018: Because of my advocacy, Mom is all around me every day. I listen to her voice on audio recordings, I watch her on videos, and I write about her. I sit in her chairs. I eat off her dishes. I wear her clothes. I even inherited her BFF Pia Roma.

Some people might think that’s strange. Or morbid. I don’t. It’s what people have done for thousands of years when their stuff was passed down from one generation to the next. And it’s always more than just things. It’s stories and sayings and songs and ways of doing and being.

Despite being steeped in Mom, I still miss her sometimes. When I do, I know where to find her.

More Over the Rainbow here.

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Inspiration, Life & Living, Videos

77-year-old ballet teacher still on her toes

“It seems amazing that I’m still dancing at 77,” says ballet teacher Suzelle Poole with a smile, “I really thought that I was going to be finished in my twenties.”

Time proved Ms. Poole wrong.

At Christmas 2017, she performed with some of her students at local care homes in the UK, where, she said, she was older than many of the residents.

Seven decades after she began taking ballet lessons, Ms Suzelle Poole still dances with grace, poise, and a confidence that is wonderful to behold. See for yourself in this inspiring three-minute video from the BBC:

Coincidentally, aging, dance and dementia seem to be linked somehow for me. Find more MAS dance-related articles here.

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Advocacy, Inspiration, Life & Living, Videos

how not to kill dementia dancers

Sir Ken Robinson’s wonderful 2006 TED talk asks a simple question: “Do schools kill creativity?“

When I re-watched it for the umpteenth time, I was struck by one particular story he told about a little girl and how a parallel might be drawn between the way we label behaviours we find challenging in people who live with dementia, and the way we label behaviour we find challenging in others, particularly children.

Instead of physically and chemically restraining people like my mom, who wanted to keep going despite living with Alzheimer disease, we need to find ways to help them “dance,” whatever dancing means to them. If and when we don’t, we are killing them just as surely as we are killing the creativity of our children in educational systems that put them in boxes, make them sit all day, stifle their curiosity and force them to obey senseless rules.

Systems should be made to fit people. Not the other way around. Here’s the powerful and inspiring three-minute story of the little girl (the full talk is below the short clip):

 

https://myalzheimersstory.com/2016/06/22/10-smart-dance-tips-for-dementia-care-partners/

https://myalzheimersstory.com/2015/11/23/when-mind-and-body-fail-look-for-the-dancer-inside-2/

https://myalzheimersstory.com/2016/03/05/once-a-dancer/

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Care Partnering, Inspiration, Life & Living, Videos

4 “easy” steps to embracing empathy

Empathy and sympathy are two different things entirely, says author and researcher Brené Brown. The former fuels connection and the latter drives disconnection according to Brown.

“Empathy is feeling with people,” she says.

In the short, charming and spot-on video below, Brown cites nursing scholar Theresa Wiseman‘s four things we must do to empathize:

  1. See another’s perspective
  2. Avoid judgement
  3. Recognize emotion
  4. Communicate all of the above

I’m sharing this because empathy is a cornerstone of relationship-centered dementia care. We need to get into the space and reality of our person who lives with dementia, and to empathize with him or her in order to provide the kind of care she or he needs and deserves. Easier said than done, I know!

Have a look and listen:

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Care Partnering, Inspiration, Life & Living, Videos

20 things & beings i love & am grateful for today

My fb friend mary missy taylor issued an invitation. Here’s what she said:

“We live in turbulent troubled times. And it’s easy to be swept up in all that is dysfunctional, uncertain, and frightening. I propose to write a list of twenty things I love and challenge friends to do the same. Your format can be a numbered list, or something more creative such as a poem. For those who wish to participate, please encourage a friend or two you know to do the same. Let’s spread LOVE today.”

Here’s my list:

1 ) my sky tonight (pictured above), and all the others before and after it

2 ) the generosity of a “stranger” i met for five minutes a decade ago who believes that when we invest in girls and women, we invest in changing the world for the better. This stranger has since regularly gifted me with inspiration, hope, faith, love, courage, determination and passion for no reason other than we are all connected and somehow instruments of the universe

3 ) stepping outside and hearing the sound of chickadee wings as they fly to and from the feeder by the window

4 ) a little grey cat who still has the energy to chase a string in a circles and the strength to hop up onto my bed at night where she curls up on the quilt with her motor running

5 ) a defiant #blacklivesmatter poet with turquoise lips that matched her multicoloured coat

6 ) tears that never seem to stop, ever

7 ) wood burning in the fireplace I’ve been lucky enough to sit in front of on winter nights for the past five years, and which makes me think of Joan of Arc every time.

8 ) the heart beat and hard beat of driving rain against my bedroom window panes this morning before dawn

9 ) pulling brown-eyed susans out of the front garden with my frien naisi just after the rain stopped, knowing she will transplant them in her garden and remember me ever autumn when they bloom

10 ) baked salmon with mustard glaze and broccoli with lemon and butter accompanied by bourgoigne aligoté

11 ) jacqueline novogratz and her work

12 ) 70% dark chocolate

13 ) dried hydrangeas in several different-sized baskets thanks to the angel who used to cut mom’s hair

14 ) the joy of writing rhyming poetry that pops into my consciousness and then drops onto a page or a keyboard like pieces of a jigsaw puzzle

15 ) leah bisiani’s take on being a care partner: “Together, the care partner, the person requiring care and those who care for them, should join as one so that life continues as they all desire and deserve. The gift of life isn’t singular nor one way, because we all have the opportunity and the privilege that comes with caring for each other in a way that enhances the experience. Love does conquer all and living with dementia can never diminish true love. No condition ever does. Just so poignant and touching.”

16 ) the ripple effect

17 ) amazing women who stand on stages everywhere and tell their worldwide stories of tragedy and triumph, tears and fears and thus create cracks and fissures that let the light in and cause healing to begin

18 ) the tick tock tick tock of my mother’s antique clocks marking time, still.

19 ) lists, especially ones like this one, this one, and this one that help care partners transform their experiences

20 ) mary missy taylor’s take on what not to say to someone who is grieving

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Activities, Advocacy, Inspiration, Toward better care, Videos

how many more steps could you take if you couldn’t take any more?

This post is dedicated to the late Dr. Richard Taylor, advocate Kate Swaffer, and care warrior Leah Bisiani.

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

“I think I could take a few steps,” Mom said, “even if there’s not too many.”

It was her birthday. September 27, 2015. She’d been “behind bars” for almost three years, during which she had been inappropriately medicated, and forced to remain seated for “her own safety.” She spent most of the daylight hours chemically restrained (with antipsychotics), and physically restrained (in a recliner or a wheelchair), despite the fact sitting still was completely contrary to her nature. She could hardly stand anymore — her gait had become unmanageably unsteady due to the meds, and from sitting most of the time.

Exercise is essential for well being. Everyone knows that. Everyone. So, even though the distances became ever shorter, I helped her to walk each day. Or at least to try to walk.  When I missed a day or two for whatever reason (which was rare), it was always more challenging at the next visit. Her legs would be shakier, she wouldn’t be as strong.

But she never gave up. Neither will I.

This video is part of a series extracted from a care conversation with my writer friend Lorrie B. “I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care, and you’re the perfect one to help me do it,” I told Lorrie on Mom’s birthday in 2017.At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!). The other posts in the series are here.

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Care Partnering, Life & Living, Love

thank your lucky dementia stars

Living with dementia is hard. I know because I know people who live with it and they tell me so. And I saw first hand how hard it was for my mom.

Being a care partner to someone who lives with dementia is also hard. I know because I did it in various ways for a decade, and I read real-life accounts about how difficult it is for other care partners everywhere every day.

Sometimes people living with dementia and their care partners feel or think they are worse off than those on the other side of the coin. But are they? And if they are, does it really matter?

Living with dementia is excruciatingly difficult on everybody: the people who live with it, the people who live with the people who live with it, their families, their friends, and their communities. Everybody. Dementia is tough on everybody.

I get frustrated sometimes because we don’t need to make this dementia rough patch into a no-win argument about who has the shorter end of the stick. No one does. No one is worse off. It’s shitty. Life is shitty. We’re all in it, and it’s shitty. As well as joyful.

Just because someone expresses the fact that she or he is having a hard time, doesn’t negate YOUR hard time. It just means every-fucking-body is having a hard time.

We could have been the mother, farther, daughter, sister, or brother of someone killed in a square in Mogadishu today. Or the parent forced to send his child to sea alone in an unseaworthy boat because that’s the only one-in-a-million chance that child has to survive, only to have him drown on the way to potential safety. Or the young Rohingya mother who watched her baby being burned alive after soldiers threw him into a fire. And then she was raped. The rest of her family was murdered; somehow she managed to escape.

There are far worse things than living with dementia or being the care partner of someone who lives with dementia. We are lucky in so many ways. We should be counting our collective blessings. Let’s maintain some perspective, and create some space for more joy to honour those who don’t have nearly as much as we do.

End of mini rant.

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Care Partnering, Inspiration, Life & Living, Videos

15 qualities dementia care partners need to survive

Being a dementia care partner to my mother who lived with Alzheimer disease was one of the hardest things I’ve ever done. It was also one of the most rewarding. Like millions of others worldwide, I was drafted into the role knowing nothing about dementia or even about being a carer. I learned a lot over 10 years.

Here are 15 essential qualities (in no particular order), that I feel a care partner must either possess initially or acquire during the process of caregiving in order to survive being a care partner for any length of time:

  1. Courage: the ability to do something that frightens one
  2. Determination: firmness of purpose; resoluteness
  3. Compassion: sympathetic pity and concern for the sufferings or misfortunes of others
  4. Flexibility: the quality of bending easily without breaking
  5. Creativity: the use of the imagination or original ideas
  6. Stubbornness: dogged determination not to change one’s attitude or position
  7. Kindness: the quality of being friendly, generous, and considerate
  8. Resilience: the capacity to recover quickly from difficulties (see Huddol video below)
  9. Stamina: the ability to sustain prolonged physical or mental effort
  10. Empathy: the ability to understand and share the feelings of another
  11. Strength: the capacity to withstand great force or pressure
  12. Energy: the strength and vitality required for sustained physical or mental activity
  13. Gratitude: the quality of being thankful; readiness to show appreciation
  14. Patience: the capacity to accept or tolerate delay, trouble, or suffering
  15. Guts: toughness of character

Some of these may seem contradictory, but I feel they are in fact complementary. What do you think? Which might you “delete?” What might you add?

These qualities are powerfully captured in a short video by recently launched caregiver community platform Huddol:

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Inspiration, Joy, Life & Living, Love

the story of the cracked pot and the flowers she grew

The parable of the cracked pot, which I first came across more than a decade ago, is one of my favourites. It’s all about the flaws in perfection and the perfection in flaws, as well as a reflection on reframing our own imperfection. It recently occurred to me that revisiting the story might also be an interesting way to reframe the stigma associated with aging and dementia. I’ve re-written the parable (below) with that goal in mind. 

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

Once upon a time, there lived a servant who fetched water every morning for her mistress. She carried it in two large clay pots that she hung on either end of a pole, which she bore across the back of her neck and shoulders.

The pots were smooth and rounded, and perfectly suited to the task of holding the clear, clean water from the river. They were identical except for the fact that one was older than the other. After the long dusty walk up from the river, the water bearer emptied the clay pots into storage vessels at her mistress’s house.

One day, the water bearer saw that the older of the two pots had developed a crack through which a little water dripped. Over time, other small cracks appeared, and more and more water leaked out as the servant made her way up the hill from the river to the house. It wasn’t long before the cracked pot was only ever half full by the time the water bearer arrived at the kitchen door.

“Throw out that old cracked pot, and get a new one,” the cook scolded the water bearer. “Soon it won’t be able to hold any water at all! It’s broken and can’t be fixed, and it’s only half as good as the other.”

The pot that remained crack free seemed to swell with pride as the cook shouted. The water bearer said nothing. She emptied the old pot’s contents into a barrel, and then placed it gently back in its rope sling, ready for the next day’s journey to the river.

The poor old pot was ashamed of her deficits — miserable that she could accomplish only half of what she used to. That night, she lay next to her clay companion who hadn’t talked to her since the cook’s harsh words that morning, and she wept because she was so much less than she had been.

“I’m no good to anyone anymore, just like the cook said,” the old pot thought as she cried, and the pain caused her cracks to crack open a little wider.

The next day when they got down to the river, the old pot plucked up every ounce of courage she had and spoke as the water bearer dipped her into the fast-flowing current.

“I am ashamed of myself, and I want to apologize to you,” she said.

“Why?” replied the bearer. “What are you ashamed of?”

“I used to be perfect and appreciated, but now I’m old and cracked and worthless, just like the cook said,” the words rushed out as swiftly as the river ran. “Because of my flaws I’m a burden rather than a help. You do all of the work, and I’m no use at all.”

But the water bearer was full of compassion, and she loved the cracked pot, “Look at the beautiful flowers on the way back to the house. I think they will cheer you up,” she said.

Indeed, as the water bearer carried her up the hill, the old pot paid special attention to the flowers. She had been so preoccupied with her cracks and flaws that she had failed to notice their beauty before. She soaked in the warmth of the sun on her curves, and swayed gently as the water bearer trudged along the path. She even felt as if her cracks might be closing slightly.

But at the end of the trail, once again half of her water had leaked out, and she returned to despair.

“I’m so sorry,” she cried.

“Did you notice the flowers only grow on one side of the path?” the water bearer questioned. “I planted seeds on your side when I first noticed you had a crack. When you cracked a little more, I planted more seeds, and as I carry you up to the house you water them and the flowers they produce every morning.”

“In the afternoon, I pick the flowers for my mistress’s table. Without you being just the way you are, she wouldn’t have this beauty to grace her house, and I wouldn’t be able to enjoy it as I walk down to the river and back.”

With that, the old cracked pot never felt “less than” or worthless again. Instead, she felt loved and useful. She fulfilled her destiny, and relished the journey back and forth to the river every day. She took pleasure in watering the flowers, and watching them grow. Eventually, the cracks weakened her to the point that she broke into pieces, which the water bearer buried on the side of the path so the flowers might wrap their roots around the clay for stability and strength.

Read a version of the original parable here.

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Hope, Life & Living, Love, Poetry

do you know the alzheimer’s alphabet?

Being a dementia care partner has its ups and downs, and often carers seem to have a harder time of it than even those with dementia they suffer to love.

On the other hand, many of us find healing, love, compassion and even joy in our role as care partners. I created this tongue-in-cheek A to Z poem to mark World Alzheimer’s Day 2017, and to celebrate, encourage and connect with care partners everywhere.

I hope you enjoy it.

the alzheimer’s care partners’ A to Z

 

A is for Alzheimer’s, the disease we all hate
B is for bravery in the lives we create

C is for courage, compassion and care
D is for denial when life seems unfair

E is for energy to live day by day
F is for friends, and family and faith

G is for going with whatever the flow
H is for hope, and helping flowers to grow

I is for imagining your care partner’s shoes
J is for joy and not crying the blues

K is for kindness, kibitzing and kids
L is for love, and not flipping our lids

M is for music, and feeling half mad
N is for never letting things get too bad

O is for oxygen – put it on yourself first!
P is for patience that stops stuff getting worse

Q is for quiet we get when we pray
R is for respite and relearning to play

S is for sanity and preserving your own
T is the time before loved ones have flown

U is for understanding it’s not about us
V is for validation and how it’s a plus

W is for warriors, and finding your way
X is for Xtra, and vision X-ray

Y is for you and all that you do
Z is for zonked and needing a brew!

Click on the image below to dowload the PDF

© Susan Macaulay 2016. 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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