Care Partnering, Inspiration, Love, Music

happy birdday mummy

Mom was born on September 27, 1928. If she were still alive, she would have been 94 today, September 27, 2022.

On her birthday in 2015, her last one here on this earth, I visited her in jail, just as I did almost every day for several hours for four years. Here’s how I greeted her and how she responded:

Mummy is what she called her own mother. The full and wonderful story of what happened on her last birthday may be read at the three posts below (or here, here and here). Not surprisingly, reading them again just now made me cry ❤

it’s better to be queer on your deer than funny on your bunny on your birthday

put a candle on a cupcake and see if you feel as lucky as my mom

love comes in all shapes, sizes and colours including small, furry, and black and white

Care Partnering, Joy, Music, Videos

mom knew hundreds of songs, but down in the valley was her go to

I had never heard Mom sing Down in the Valley. Ever. Until a couple of years after she was diagnosed with Alzheimer disease. Then she (we) sang it every day, sometimes five or six times a day, until just before she died.

Mom and I must have sung Down in the Valley thousands of times between 2011, when I moved back to Canada to be her care partner, and 2016, when she said goodbye to this world. During that time I learned so much from our musical sessions together.

“Why don’t we sing a song Mom?” I would say when things were getting a bit out of hand, when either she or I was feeling stressed or angry or sad, or when I had run out of other things to do to keep us both occupied.

“Okay,” she would respond.

“What do want to sing Mom?” I always asked before I made any suggestions of my own. It gave her a modicum of control as her world was spinning out of it.

“How about Down in the Valley?” She would almost always reply — It was her go to.

“Okay Mom. You start.”

“Down in the valley, valley so low,” the words came out of her mouth sweet and true. “Hang your head over, hear the wind blow. Roses love sunshine, violets live dew, angels in heaven, know I love you.”

Mom had a beautiful voice. She knew all the words. I fell short on both counts, at least at the beginning. I learned the words eventually–to Down in the Valley and dozens of other tunes– but my voice would never match hers. Ever.

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down in the valley: one of our gazillion favourites

5 things I never knew until I sang with my alzheimer mom

Care Partnering, Hope, Inspiration, Love

10 important facts i learned about people living with dementia from being my mother’s care partner

My mom (right) and her brother Eddy (left) during one of their last visits together (April 2013). They both lived and died with Alzheimer disease and dementia in their mid eighties.

My mom, who lived with Alzheimer disease, and I were care partners for more than a decade. My care partnering role changed and evolved during that time. When it began, I lived overseas. In 2011, when it became clear she could no longer live on her own, I returned to Canada to live with her in her own home. She was relocated to a nursing home, which I came to call a “dementia jail,” on November 16, 2012. For the next forty-five months I visited Mom for several hours virtually every day.

I didn’t see her on August 11, 2016; I didn’t have the strength that day. But I was by her side for the next six, and I held her hand when she died on August 17, 2016.

Being my mother’s care partner was the hardest thing I have ever done. It was also the most rewarding. I learned so much. I loved so much. I cried countless tears. I wouldn’t trade the journey for anything because I also experienced the deeply spiritual privilege of loving another person unconditionally.

Below are ten important facts I learned during and after the time I spent being my mother’s care partner (I’m still learning!)

People who are living with dementia, no matter what “stage” of the condition they are living with:

  1. are human beings with wants and needs just like the rest of us
  2. have feelings just like the rest of us
  3. have rights just like the rest of us
  4. deserve to be treated with dignity, just as we all should be
  5. are aware of the world around them, even when it seems they might not be
  6. are capable of loving others
  7. deserve to be loved and cared for
  8. can teach us lessons if we are open to learning
  9. are different than us, not less than us
  10. are not “empty shells”

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take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

13+ needs we share with people who live with dementia

Hope, Humour, Inspiration, Love

your name is a queen (elizabeth shares a lesson on labelling)

Let it go (it doesn’t matter if they know you or not) is one of MyAlzheimersstory.com’s most shared pieces. When I posted it on Facebook in January 2020, long-time follower Elizabeth Dunbar shared this delightful story:

My dad knew my essence until his last breath. Labeling and putting people in boxes and pigeon holes is a human convention. Other animals recognize each other without knowing relationships or each other’s history. They just accept.

So whether Dad knew my name or my relationship to him or not didn’t matter to me. I remember going away for a few days about a year before he died. When I returned, I bounced into his room as always. He looked quizzical. I realized he didn’t totally remember me, and I gave him permission to do that.

“I know you’re not feeling well enough these days to totally remember me,” I said. “Is it ok to give you a hint?”

He nodded his assent.

“Well I’m the daughter. One of two children you had. I’m the one that talks a lot!” I joked.

He threw his head back and laughed with tears in his eyes.

”Your name: it’s a Queen,” he said.

“Yes, that’s right,” I said. “I’m Elizabeth. Queen Elizabeth.”

We both laughed.

This was a simple conversation we had many times after that. Sometimes I think he was lucid and pulling one over on me, because that would be him. I always treated him like he was my dad, and let him know that any forgetting was simply okay.

I love this story. It’s so hopeful and helpful, and speaks to the power of playfulness and going with the flow. Thank you so much Queen Elizabeth Dunbar.

it doesn’t matter if they know you or not

20 great questions to ask when a loved one with dementia doesn’t recognize you anymore

how often do we fail to recognize them?

 

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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.

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

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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Challenges & Solutions, Resources, Toward better care

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia

Friday March 20, 2020: To say these are challenging times is a massive understatement. But we have all been through challenging times, as individuals, as communities, as nations.

Yet, so far, we have managed to survive as individuals, and as a species. We have what it takes to get through seemingly impossible challenges, especially when we work together.

Dementia care partners everywhere know that to be a fact. We have learned what it takes to survive and thrive on a day-to-day basis – sometimes even a moment-to-moment basis! Unbelievably, many of us have discovered joy and inspiration along the way.

We can make it through this pandemic. Dementia care partners worldwide know we can, because we’ve learned how to deal with stuff like this. It’s part of the territory. Yes, there will be seemingly unbearable loss and grief. But those too are part of the territory. Part of being human.

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia
  1. Love
  2. Hope
  3. Resilience
  4. Courage
  5. Determination
  6. Ingenuity
  7. Creativity
  8. Music
  9. Connection
  10. Caring
  11. Compassion
  12. Relationships
  13. Interdependence
  14. Empathy
  15. Faith
  16. Curiosity
  17. Laughter
  18. Kindness
  19. Generosity
  20. Ferocity

This post was inspired by Jamie Tworkowski, who blogs here.

17 links to the “other side” of dementia

a prayer for those who care worldwide

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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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Family, Poetry, Real life

6 priceless gifts you could give people living with dementia (and everyone else for that matter!)

These gifts are inexpensive (they don’t cost dollars and cents, so everyone can afford them), and yet priceless (because of the fact they can’t be bought, and must be given from the heart). Even better, they can be gifted all year round!

Please consider giving one, several or all of these gifts this year (and always) to people who live with dementia in your family, your community and around the world.

Respect

You could treat people who live with dementia like the human beings they still are no matter what “stage” of the condition they are living with. You could treat them like adults, not children. You could respect their wishes, wants and desires. You could believe their lives still have value, and you could demonstrate that belief in the way you interact with them.

Love

You may have been told that people who live with dementia become empty shells. But that’s not true. They are people with rights and needs just like the rest of us, and they need to be loved just like the rest of us do. Share your love.

Time

You could give them the most precious gift of all: the gift of time. Carve out a space in your busy life and go to visit someone living alone, or someone who rarely gets visitors even if they are living in community. Once you get there, sit and stay awhile. You don’t have to do anything – just being with someone is often enough.

Understanding

People who live with Alzheimer’s disease and other dementias are widely misunderstood, stigmatized and marginalized. If each and every one of us took the time to educate ourselves and to really understand what’s going one with people who live with dementia, and what causes them to behave the way they do, we would all be a lot better off. If you haven’t already begun learning, start educating yourself now.

Compassion

Imagine what it might be like to be experiencing brain changes in which your memory and your ability to understand the world are shifting in ways that make it hard for you to navigate reality. Imagine what it might be like to experience stigma and isolation, to have other people take control of your life. Imagine what it might be like to walk in their shoes, and then give the people you interact with who are living with dementia your compassion and understanding.

Advocacy

People who live with dementia are often treated like objects, like pieces of furniture, as if they are less than human. Many are unable to speak up for themselves. We need to be their voice. We need to ensure that they are treated with dignity, and that they get the care they have a right to. When you see people who live with dementia being neglected, abused or treated in ways they shouldn’t be, SAY SOMETHING! And then keep advocating until things change.

These are gifts that money can’t buy, but that we all have the capacity to give.

Please give generously.

13+ needs we share with people who live with dementia

alzheimer annie invites you in

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

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Family, Poetry, Real life

alone: a heartbreaking poem by 89-year-old lilly who lives with dementia

September 8, 2019: “Do you want me to read you the really sad poem I wrote last week?” Lilly* asks.

“Gee Lilly, I don’t know,” I say. “Not if it’s really sad.” I’m feeling a little melancholy myself.

“I’m gonna read it to you anyway.” Lilly has a mind of her own, no doubt about that! She and I have been playing Scrabble on Sunday nights for about year. I go to her place sometime between 7 and 8 p.m. and we play for an hour and a bit. She tells me the same stories over and over as we play, and I listen like it’s the first time every time.

Lilly is a fine Scrabble player, and I lose about as often as I win. She also has a great sense of humour, and is generally pretty positive despite her many physical challenges including spinal stenosis, which keeps her hunched over, in pain and using a walker.

I’ve come to learn quite a lot about Lilly, who will turn ninety on Valentine’s Day 2020. She has six children (a seventh died a few years ago), and ten grandchildren. Great grand twins are expected in November, and Lillly is determined to live until they’re born.

Lilly’s family members call and visit often, and although I’m not there to witness it, I’m certain at least one of them is in touch each and every day. She has other regular visitors, including me, and she goes to a full day adult program (which she adores), on Mondays, Thursdays and Fridays. She has LOTS of contact with family, friends, and support workers. But sometimes, because of her dementia, Lilly forgets about the abundance of social interactions she enjoys, and she feels lonely as we all do from time to time. When that happened last week, Lilly, who is a great poet and writer, put pen to paper.

As she read me the poem she had written, tears came to my eyes, and at the end, my heart broke with despair. Lilly gave me permission to share her poem (with a few tiny tweaks by yours truly):

alone

©2019 Lilly & Susan Macaulay

alone

i haven’t had a visit
i haven’t had a call
it really seems my family
doesn’t care at all

this is a special weekend
too bad that they don’t see
i’m lonely and I feel
that no one cares for me

i’m old now and I guess
i’m a bother to them all
but oh! how I am wishing
that one of them would call

i do not like the message
their silence seems to send
it comes through loud and clear:
they wish my life would end

Please don’t forget people who live with dementia, even though they may forget you. Call often. Visit often. Hold their hands in yours. Hold their hearts in yours. Tell them you love them over and over and over again, especially when they may not remember what you have said. It means the world to every one of us, young and old, living with a disease or not, to feel we are loved. 

* Not her real name.

©2019 Lilly & Susan Macaulay. I invite you to share my poetry widely via this post, but please do not reblog or copy and paste my poems into other social media or blogs. Thank you.

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

don’t mourn me long

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Family, Life & Living, Love, Videos

an open letter and song request for country great kenny chesney on behalf of people who live with dementia and their family and friends

Dear Mr. Chesney,

I love your song “While He Still Knows Who I Am,” but would you write another one please?

I am a dementia care advocate who learned about dementia through lived experience with my mom. She died in August 2016.

One of the tragedies of Alzheimer’s disease and other dementias is that many family members and friends of people who live with dementia think the person is “gone” when she or he no longer easily recognize family and friends, and so the family and friends stop visiting the person who is living with dementia. This is heartbreaking because this is when love, connection and compassion are most needed by the person who is living with dementia.

It really doesn’t matter if a person living with dementia recognizes us or not. We need to ask ourselves why we get so focused on the recognition part instead of on loving, connecting and being compassionate.

Furthermore, a great deal of healing, love and bonding may be shared by both the person living with dementia and friends and family until the very end. I can’t emphasize how life affirming and deeply spiritual this can be for all involved.

Your song is beautiful and touching, but it infers that people living with dementia are not worth seeing once they don’t recognize us. In fact, the worst thing we can do when a person living with dementia doesn’t recognize us anymore is to stop spending time with him or her. That’s why I’m writing to ask you to please produce another song that will encourage family members and friends to keep spending time with their loved ones who live with dementia, ESPECIALLY when their loved ones don’t know them anymore.

Mr. Chesney, in your audio commentary about “While He Still Knows Who I Am,” you say the song is “heavy” and as the narrator you “have a responsibility.” Please take your responsibility to heart and give us another song that will encourage family and friends to remain connected with people who live with dementia until the very end.

Thank you,

Susan Macaulay
Dementia Care Advocate

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

http://handsoffmybrain.com/2018/10/are-you-my-mother

https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/

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