Category: Hope

Advocacy, Hope, Toward better care

7 words not to use in alzheimer news

My Alzheimer's Story

Counterintuitively, the words the majority of us most want to hear with respect to Alzheimer disease are those the media, researchers and Alzheimer’s organisations should employ as little as possible.

Or at least so says HealthNewsReview.org and a group of dementia pioneers and “outliers” including Dr. Eilon Caspi, Dr. Peter Whitehouse, care consultant Judy Berry, and dementia rights advocate Mary Radnofsky among others.

Believe it or not, the seven words are:

  1. hope
  2. dramatic
  3. promising
  4. victim
  5. breakthrough
  6. miracle
  7. cure

Sound crazy? Have a listen to this eye-opening podcast that could change your whole view on “finding a cure,” and “taking care:”

Lots of thought-provoking links on this issue here.

https://myalzheimersstory.com/2016/04/23/5-ways-we-rob-people-with-dementia-of-their-dignity/

https://myalzheimersstory.com/2017/06/13/10-practical-ways-care-partners-can-help-preserve-the-dignity-of-people-who-live-with-dementia/

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Hope, Inspiration, Quotes

how often do we fail to recognize them?

My Alzheimer's Story

Coauthor of A Pocket Guide for the Alzheimer’s Caregiver and one of Maria Shriver’s Architects of Change, neurologist Daniel C. Potts champions life-affirming care for those living with Alzheimer’s disease/Dementia and their care partners. His blog is here.

When I saw the above quote of his on Twitter (@DanielCPotts), I just had to create a meme with it. What a wonderful, mindset-changing sentiment which EXACTLY captures the importance of looking beyond and behind the condition to see the person that remains until the end.

The quote also joyfully reminded me of these moments with Mom as well as other reflections on recognizing and being recognized:

https://myalzheimersstory.com/2014/10/21/12-pinkie-patti-and-funky-punkie-pics-for-posterity/

https://myalzheimersstory.com/2014/04/03/mirror-mirror-on-the-wall/

https://myalzheimersstory.com/2015/04/09/20-great-questions-to-ask-when-a-loved-one-with-dementia-doesnt-recognize-you-anymore/

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Care Partnering, Hope, Inspiration, Joy, Love

courageous vangaros united by love in life and death

My Alzheimer's Story
Pops and Vince Vangaro

Albert Anthony “Pops” Zangaro

April 1st, 1942 – April 10th, 2018

For fourteen years, Vince Zangaro cared for his “Pops” who lived with Alzheimer’s disease. During that time, Vince developed a deep and abiding love, compassion and a gentleness of spirit that endeared him to care partners around the world. He shared some of his feelings on Facebook the day he and his family said farewell to Pops.

Besides being the primary care partner to his father, Zangaro is a musician and the main driver behind the Alzheimer’s Music Fest. His posts and videos documenting the loving care he and his wife Amy give Pops inspired and will no doubt continue to inspire thousands.

As Zangaro and his family approached their final days together, Vince took the time to recognize Chappie Bird, his father’s feathered friend. Here’s that Facebook post as well:

See a video of the Zangaro family caring together here.

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Care Partnering, Hope, Inspiration, Joy, Love

son thanks pops’ caregiver bird at alzheimer’s end

My Alzheimer's Story

Vince Zangaro is an extraordinary person. He’s cared for his “Pops” who lives with Alzheimer’s disease for fourteen years. During that time, he has developed deep and abiding love, compassion and a gentleness of spirit that have endeared him to care partners around the world.

Besides being the primary care partner to his father, Zangaro is a musician and the main driver behind the Alzheimer’s Music Fest. His posts and videos documenting the loving care he and his wife Amy give Pops inspire thousands.

Now, Zangaro and his family are approaching their final days together, and true to form, Vince takes time to recognize Chappie Bird, his father’s feathered friend. Here’s the Facebook post:

See a video of the Zangaro family caring together here.

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Activities, Advocacy, Hope, Humour, Life & Living, Videos

how old is old?

My Alzheimer's Story

 I love the quote from the “old man” towards the end of the video below. He says:

 “When people start stopping, that’s when they start getting old.”

I think the same principle applies to people who live with dementia.  I also believe that by “getting to know” people who live with dementia, and understanding who they really are, we can change the negative narrative associated with Alzheimer’s disease and related dementias (ADRD) as well as those who live with diseases that cause dementia.

We need to think differently about what it means to live with ADRD, just like the young people in the video change their thinking about what “old” is by experiencing what “old” people can do, and also by learning from them.



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Hope, Joy, Love, Music

mom’s 2012 irish medley

My Alzheimer's Story

 

The Georgeville Neighbours’ Lunch was held (probably still is) the third Thursday of every month starting in late fall and running through to early spring. Mom usually went with her long-time friend Margery, who picked Mom up on her way to the event. Margery was a good friend to Mom. Good friends often become fewer and farther between for people who live with dementia.

When our angel Caroline joined Mom and I, she and Mom went to the Neighbours’ Lunches together. Sometimes I tagged along. The March 2012 lunch was on the 15th, two days before St. Patrick’s Day. Caroline helped Mom get “dolled up” in her best festive green gear, and before they left for the lunch Mom treated us to an impromptu concert in the living room. She didn’t remember all the words to the tunes, but that didn’t matter. It was such a joyful time. Mom sang beautifully and hammed it up, Caroline laughed so hard her cheeks hurt, and I captured what I could on my iPhone. (I’m so grateful for technology.)

By March 2012, Mom had lost her driver’s licence (the spring before), and she needed someone (either Caroline or I) to be with her all the time. She hadn’t been able to cook for herself, with the exception of making toast and tea, for more than a year. Nevertheless, she was still fully engaged with life and the people around her. In the video, you’ll see a puzzle on the table in the background, it’s a big-pieces jigsaw puzzle of Canada. We must have completed that puzzle 25 times during our last year together in her own home. Even Pia, Mom’s long-haired grey cat, got in the act.

I wish I could sing like Mom did. She knew hundreds of songs, a few of which I learned from her during her last years. She and I sang up until a couple of days before she died. Music saved our sanity; it also brought us both happiness and healing. I hope you enjoy this Irish medley as much now as we did in 2012. And oh yeah, Happy St. Patrick’s Day 🙂

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Hope, Joy, Life & Living, Videos

baby buddy: you get peed on, you get puked on, who wouldn’t want to do it?

My Alzheimer's Story

Mom ADORED babies. This would have been the perfect “activity” to help her feel joyful, give meaning to her life and help others at the same time while she lived in the early and mid “stages” of Alzheimer disease.

When I watched the video, it reminded me of this one in which 10-day-old wyatt met his great-grandmother for the first time for the first time (precious!).

Like combining childcare and eldercare, I think this is wonderful win/win idea that could really work and help give PLWD a sense of meaning and purpose if those things might be missing from their lives.

Your thoughts?

Furthermore, this is the way (with love, compassion, tenderness and humanity) we should treat elders living with dementia in long term care instead of like this.

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Hope, Humour, Life & Living, Love, Videos

one little kitty’s top dementia care tip

My Alzheimer's Story
Pia Roma waking up from her morning nap, September 2017

Mom adored her little cat Pia Roma, who was named for a trip Mom and I took to Rome in the early 2000s.  When Mom was placed in ElderJail, I gave Pia to the friend of a friend to care for. She hid under the sofa for six weeks, only coming out at night to eat, drink and use the litter box.

The friend whose friend I’d given her to retrieved her and took Pia to her flat where Pia hid under the bed instead of the sofa. Meanwhile, when I saw what ElderJail care was like, I couldn’t leave Mom, so I rented a house nearby. About a month later, I rescued Pia and brought her to live with me. This time she hid under a big armoire in the living room, thankfully it was only for a few days. That was five years ago, and we’ve grown pretty close since then

Pia’s “getting up there” in cat years, and is starting to have health issues. In fact, she was so ill in the spring that I thought I was going to lose her. But being a fighter seems to run in the family, and lo and behold she bounced back. Like Mom in her waning years, Pia hasn’t lost her playfulness, quirkiness and attitude.

I’ve learned that Moms and cats have a lot to teach us about living right, and fighting the good fight.

 

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Hope, Inspiration, Poetry, Videos

pinkie pattie, pinkie punkie & pinkie pia’s peace day poem

My Alzheimer's Story

Coincidentally, World Alzheimer’s Day is also the United Nations’ International Day of Peace.

Mom, Pia Roma and I made this video on September 21, 2009, to mark #PeaceDay. I wore a green ribbon around my left wrist in support of the revolution that was happening in Iran that summer.

Mom had been showing symptoms of Alzheimer disease since 2006, and she momentarily forgot Pia’s name when we were making the video. But she clearly articulated the meaning of peace in a few words: “Love your neighbours in all the countries,” she said.

What a tragedy that so many people, including too many world leaders seem to have forgotten what peace means, when my mom, who lived with dementia, knew it very well until the end.

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Hope, Life & Living, Love, Poetry

do you know the alzheimer’s alphabet?

My Alzheimer's Story

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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