Advocacy, Care Partnering, Death & Dying, Love

hilda zlataroff should have died of old age

Family care partner Nicole Jaouich visited her 102-year-old mother Hilda Zlatoroff in a Quebec long-term care facility every day for 6 years to help her eat and drink; her mother’s eyesight was failing, and she lived with dementia. When COVID-19 struck, no visitors were permitted from March 14, 2020, onward. Over the next 5 weeks, Jaouich watched her mother’s condition deteriorate via a video camera. Her mother died of dehydration on April 27,2020.

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At 102, it wouldn’t have been surprising if Hilda Zlataroff had died of old age.

Tragically, she did not.

Hilda Zlatoroff died of dehydration in the Saint-Joseph-de-la-Providence long-term care facility in Quebec, Canada, at 5:35 am on April 27, 2020. Ms. Zlatoroff had been a resident there for nine years. She didn’t die of COVID-19. She died as a result of COVID-19, and the massive cracks in long-term care that became canyons with the onset of the pandemic.

“I guarantee that if I had been able to be with my mother, she would not have died of dehydration,” says Nicole Jaouich, Hilda Zlataroff’s daughter.

Jaouich had visited her mother every day for six years to help her eat and drink because Hilda Zlatoroff’s eyesight was failing and she lived with dementia.

“Maman needed encouragement to eat and drink. It was important not to rush her. ‘Do you want to drink a little juice?’ I would say to her, and then help her to lift the glass to her mouth,” Jaouich says.

“When I couldn’t be there or needed a break, I hired someone to go to the residence and be with her. She had someone with her eight hours a day every day for six years. She was my mother, she deserved to be cared for,” Jaouich has tears in her eyes.

Then COVID-19 struck, and from March 14 onward, no visitors were permitted at the residence in an effort to limit the spread of the disease. Over the next five weeks, Jaouich watched her mother’s condition deteriorate via a video camera she’d had installed in her mother’s room. It was painful.

“Sometimes they put the meal tray in front of her, but she didn’t touch the food because she couldn’t see it. Then they would come back and pick it up, even though she hadn’t eaten a thing. And how could she drink? They didn’t help her,” Jaouich says.

“I will never forgive the government for banning family caregivers from visiting and helping to care for our family members. The government knew very well the facilities were understaffed. This has been an issue for years,” Jaouich says.

“Family care partners were needed every day to help give basic care. When family members were banned, it made things even worse than they already were. Family care partners should have been integrated into the caregiving, not forbidden from coming to help,” Jaouich says.

“Of course I knew my mother would die, she was 102. But to have her die from dehydration, alone, without me by her side, was criminal and cruel. I will never get over it,” says Jaouich, who, ironically, is an advocate for better long-term care in Quebec, and a board member of Handicap Vie Dignité, an organization that has been fighting for reform for years.

Jaouich wasn’t able to be with her mother when she died, but she was able to visit twice for ten minutes in the week before her death, and then for forty-five minutes each time during the last few days before she passed.

“She was so beautiful,” Jaouich smiles slightly. “The last time I went she was breathing peacefully and her face was relaxed. She squeezed my hand slightly when I held hers. She knew it was me. She knew I was there. I only wish I could have been with her when she died.”

dying with my mom

it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks

5 Raw Emotions Alzheimers Dementia Caregivers Feel Every Day

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Care Partnering, Hope, Inspiration, Joy, Love

5 powerful dementia care lessons i learned being my mom’s care partner

Being my mother’s primary care partner in various ways for ten years was one of the hardest things I’ve ever done. It was ultimately also one of the most rewarding in that it provided me with countless learning opportunities. I’ve blogged before about the joys, the difficult emotions and the lessons I and other dementia care partners have learned; here are five more:

1 ) People are people, not furniture

A changing brain does not suddenly make someone less than human, less what they were before their brain started to change, or less deserving than anyone else. People are people, no matter the condition of their brain, or their body. They have rights, needs and wants, just like the rest of us do. Recognizing and fulfilling those rights, needs and wants are societal and communal responsibilities.

2 ) Stigma destroys the stigmatized

Stigma can be more destructive and devastating to a person’s well being than a terminal illness. Stigma causes many people who live with dementia and the people who care for them to become isolated, sometimes even shunned by family and friends. This isolation is often more damaging to people who live with dementia and their care partners than the condition itself. Changing the way we see dementia and the people who live with it is one of the most powerful ways we can positively impact the well being of those who live with the condition.

3 ) Life is challenging

The challenges we face in life provide opportunities for us to learn, grow and become better people. The challenges of living with dementia and/or being the care partner to someone who lives with dementia are like other life challenges in the sense that they also provide opportunities for us to learn, grow and become the best we can be. It’s up to us to find the opportunities in the challenges we face.

4 ) We are not dead until we die

This seems obvious. Nevertheless, others treat many people who live with dementia as if they are already gone. I believe that treating someone as if they are not here when they still are increases the chances that they will decline at a faster rate. People need attention (via words, deeds and touch) to know they are loved and appreciated. Treating people with love, compassion, understanding and tender care will improve their well-being and boost their ability to thrive, even as they near the end of life.

5 ) Not needing to be recognized increases the chances you will be

When friends and family let go of the need to be recognized by a loved one who lives with dementia, I believe the chances that the person living with dementia will recognize them increases. My theory is unproven and based on my own experience, but I feel strongly that it’s true. When we let go of the need to be recognized, we become more relaxed, more loving, and more open to possibility, all of which impacts those around in a positive way and creates an environment in which positive interactions are more likely to occur.

What lessons have you learned?

top 15 things dementia care partners say they’ve learned

5 Uplifting Emotions Felt by Alzheimers Dementia Care Partners

5 Raw Emotions Alzheimers Dementia Caregivers Feel Every Day

17 links to the “other side” of dementia

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Care Partnering, Hope, Inspiration, Joy, Love

courageous vangaros united by love in life and death

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

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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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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Humour, Life & Living, Love, Memories

flute flies & love taps

September 11, 2017: Mom had a great sense of humour.  She spent more time laughing than she did crying, although of course like all of us she did both. After she went  into what I would come to call “elderjail,” I often brought her to my place for lunch, or dinner, or healing music sessions with Eric.

On this particular day, September 11, 2014, we made a mid-day meal together. I must’ve had some bananas, or maybe some tomatoes from the market sitting on the counter because there were fruit flies in the kitchen.  Mom and I got to  laughing about the “flute flies,” where they might’ve come from,  and what we might do with them. On the spur of the moment I pulled out my iPhone, as I often did, and recorded a “selfie video.”

While September 11 is remembered as a tragic day by many, and rightly so, I recall it with a smile because of the flute flies and the love taps Mom planted on my wrist thus causing my hand to shake, iPhone and all…

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Care Partnering, Family, Inspiration, Life & Living

the little things are actually everything

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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Care Partnering, Hope, Inspiration, Joy, Love

47 things family dementia care partners say they’ve learned

 

Most family members who are dementia care partners will tell you that the role into which they have been unwillingly drafted is one of the toughest, if not THE toughest thing they’ve ever done. And yet, many will also tell you that plenty of learning goes on as well.

Here’s what they said when I asked family members who are also dementia care partners to fill in the blank in this sentence: “I’ve learned ____________.”

  1. I’m only human
  2. shit happens
  3. I am the only one I can depend on
  4. housework isn’t a priority
  5. a little lying can be a good thing
  6. you can’t control anyone else but you
  7. not to waste a moment of my life on negative feelings like bitterness, jealousy, or anger
  8. I am stronger than I ever thought I could be and weaker than I ever wished to be
  9. joy and healing are possible even the in the midst of tragedy and despair
  10. people who tell you to be a vocal advocate often get frustrated when you become one
  11. life is fleeting and love is enduring
  12. I have control over how I react and respond
  13. some day is today
  14. who I am doesn’t depend on what I do
  15. dementia does not rob a person of who she is
  16. caring is not what you say, it’s what you do
  17. all things pass
  18. people with dementia behave like the rest of us
  19. love prevails
  20. I’m great at counting to 10
  21. you never know what’s going on in someone else’s mind
  22. that people are much more than the disease they may have
  23. if I can make my loved one smile, my day isn’t so bad
  24. that everything is relative
  25. who my friends are
  26. how amazing my friends are
  27. how little I need
  28. how to redirect
  29. to live in the moment
  30. to love unconditionally
  31. to breathe and wait
  32. to let love in
  33. to look at life differently
  34. to listen with my heart
  35. to live with the glass half full
  36. to not sweat the small stuff
  37. to slow down
  38. to expect the unexpected
  39. to pick my battles
  40. to enjoy our time together
  41. to see humour in small things
  42. to make conversation about anything
  43. to see the beauty in small ways
  44. to never take things or people for granted
  45. to invest in those who are really here for me
  46. to be non-judgemental
  47. to say i love you more often

There are 15 more learnings here.

Being a family dementia care partner is a roller coaster of tragically raw and sometimes uplifting emotions. It can also be a tremendous learning experience if we choose to let it teach us. What have you learned so far?

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Care Partnering, Hope, Humour, Joy, Love, Memories

happy big bird day!

May 3, 2012: Caroline and Mom after they had just hung out the laundry. The colourful napkins they’ve carefully pinned on the line make me think of Buddhist prayer flags.

I didn’t know I was shaking hands with an angel when I met Caroline (aka Big Bird; pictured above with Mom), on October 31, 2011, my late grandmother’s birthday, and the day after I arrived back at Mom’s place to live with and care for her full time.

Caroline knocked at the door at 13:00 precisely. I soon learned it was her habit to be punctual. Never early, never late. Always on the stroke of the appointed hour. Initially, she came to us on Monday and Wednesday afternoons; someone else came on Tuesdays and Thursdays, and yet a third person on Fridays; all of them from 13:00 to 18:00.  The rest was up to me.

Big Bird and I connected from the first minute of the first day, just as she had bonded with Mom immediately when she had begun working with her six weeks before my return. They made a somewhat comical pair: tall, lithe, 33-year-old Caroline, and short, stocky 83-year-old Mom. Their 50-year age difference made no difference at all. They loved each other from the get-go.

When an angel walks into your life, you do everything you can to keep her there. Over the next several months Caroline and I fought to have her spend more time with Mom and me. Thank God we won that battle! By the end of January, 2012, Caroline was with us from 09:00 to 18:00 five days a week. We were so blessed. Caroline accompanied Mom through breakfasts, shower times, walks, trips to the grocery store, visits to the bathroom, clothes shopping, flower arranging, snow shoveling, birdwatching, leaf raking, gardening, watering, fire lighting, lunches, laundry hanging and whatever else was on the agenda with grace, compassion and the utmost care. The did everything together, and laughed and giggled their way through life’s ups and downs like a couple of schoolgirls, despite the hardships and challenges of living with Alzheimer’s disease. Of course there were difficult times–many–and we all cried separately and together on many occasions as well. I was/am profoundly grateful for all of it.

The three of us formed an amazing care partner team. We tackled chills and spills; we celebrated small victories. None of us could have done it without the other two. Our triad was and still is a testament to feminine strength and wisdom. January 12 is Big Bird’s birthday. Here’s to her with a rogues’ gallery featuring Mom and her during various adventures — I know it will bring a smile to her face and perhaps a tear to her eye.

I love you Big Bird! My brain may one day forget all you did for Mom and me, but my heart will always remember. Happy Big Bird Day XOX Punkie

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Care Partnering, Fiction, Hope, Love

zlateh the goat and the “maaaaaaaaaaa” that means many things

Life speaks in many ways through countless channels. On the night I first heard this end-of-Hanukkah story read by CBC As It Happens’ “Fireside Al,” I was moved to tears. I was struck by the parallels between the story of a furrier’s goat and the way we treat old people, at least in the first instance. I couldn’t help but be touched when they young hero understands that Zlateh’s bleat carries meaning beyond that which he might have dreamed. I reflected on how we are often at a loss when those we love who live with dementia try to express their thoughts and feelings and are unable to do so in ways we can easily decipher.

I hope you are as moved by the story as I was and still am:

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