Care Partnering, Hope, Joy, Little things count, Love

my kissin cousin and mom and thanks for your support



Five years ago today, on November 5, 2011, my cousin Liane (left) came to see us for what would be her last visit to Mom’s big red brick house on the hill. We marked the occasion with laughs, smiles, tons of fun and an impromptu photoshoot in Mom’s kitchen during which we clowned for the camera:




I share this image now because it reminds that every person who lives with dementia and every care partner who cares for someone who lives with dementia needs love and support. This is a part of life that simply cannot be undertaken alone. If you know someone who lives with dementia, please reach out to them.

I am so very grateful for the support I’ve had and still have from my cousin Liane, from friends near (in the village and across Canada) and far (many around the globe and some of whom I’ve never met), from people everywhere who follow this blog and leave comments (or not) and from complete strangers. Thank you so much from the bottom, top and sides of my heart; I know Mom thanks you too from heaven above. We could not have done what we did without you, and your continued support means everything to me going forward.

Thanks again. #FightTheGoodFight for better eldercare.

XOX Susan

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Hope, Joy, Life & Living, Love, Videos

you raise me up to more than i can be


I love the hopefulness of the image above, and the humanity of the tune below.

Despite the challenges of my journey with Mom, I learned so much from it and from her as we travelled the road hand in hand. I’m grateful for the time we spent together here in this life, and particularly as she lived with dementia of the Alzheimer’s type.

Nevertheless, our journey with dementia was also replete with tragety, frustration, despair and suffering, most of which was uneneccessary. The way we care for people who live with dementia and their care partners is unacceptable. Our healthcare systems are broken, elders are neglected and abused, we need to fight for massive change. We can’t give up; we must rise up. This post is dedicated to all those who would make this world a better place for us all, especially those of us who are vulnerable elders who live with dementia — you raise me up to more than I can be!

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Care Partnering, Hope, Inspiration, Joy, Love

don’t waste your time hating alzheimer’s disease


“Someone asked me the other day if I hated Alzheimer’s disease,” wrote Vince Zangaro on his Facebook page.

Besides being the primary care partner to his father, whom he calls Pops, Zangaro is a musician who is 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.

“I told them that for the first several years it was a battle,” Vangaro wrote on. “I realized that if I continued to hate Alzheimer’s that I would reflect that anger onto my father. I decided to build a relationship with the disease so I could continue to have one with my dad.

“It’s not like we do not get angry but anger only gets you so far. Pops and I have had a relationship with this disease going on thirteen years. To accept and not hate has made our family much more at peace. This is just where we are at in life.

“Each of us has to do what we have to to find a sense of clarity through this journey. So do I hate Alzheimer’s? No. It is a part of my father and I love him with all my heart. We accept this and don’t spend our time hating, we rather spend our time loving the moments we have.”

I went through the same kind of transformation that Vince Zangaro describes here. Although he was in his early thirties and I was in my late fifties when it happened, I discovered the same truths that Vince, Amy and Pops did. There’s no point hating Alzheimer’s disease or other dementias. It’s so much more sensible, productive and enriching to spend your time and energy loving the people who live with it, and helping them engage life for as long as they possibly can. The rewards for everyone are priceless and immeasurable.

Here’s the Zangaro family in action:


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Care Partnering, Hope, Inspiration, Joy, Love

leslie jones 5 top care lessons & 5 more of my own

lessons learned concept on black blackboard with coffee cupt and paper plane

“I’m so sorry for your loss, our loss. I have followed you and your mom’s story for a long time. My mom just died in December 2015. She lived with me, and I took care of her for the past ten years,” wrote Leslie Jones on the Facebook post after I posted something about Mom’s death.

Ten years is a long time to be a care partner to someone who lives with dementia. I saluted and thanked Jones for all she had done for her mother and I asked her if she would like to share her top five “lessons learned.”

“There were so many,” she wrote, and then she listed these top five:

  1. Patience is paramount
  2. Tomorrow will be better
  3. Laugh every day
  4. She gets frustrated too
  5. Nails don’t trim themselves

Here are five of my own (besides these):

  1. There’s no point hating a disease
  2. “Broken” minds do not define who people are
  3. Holding hands is heaven
  4. Music is better than medication
  5. Somewhere over the rainbow is here and now

What are yours? Feel free to share in the comments below.

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Care Partnering, Hope, Joy, Life & Living, Love

5 good things alzheimer’s brought me more of

150615 Mom and me

Fellow blogger Rena McDaniel ran a post entitled I’VE BEEN ROBBED! on her blog The Diary of an Alzheimer’s Caregiver in which she described the devastation Alzheimer’s disease has wrought in her life.

I know where she’s coming from; so do millions of others. I strongly believe we need to change that. We need to change the way we think, write and deal with the disease and the people who have it. After I read her piece, I challenged Rena to write a follow-up about the ways in which being a dementia caregiver has been a blessing in her life. She responded with this list of blessings which include:

“I am blessed… that everyday I don’t have to worry that she is being neglected, abused or uncared for. That I am able with the help of my wonderful husband to provide…a safe, comfortable… environment for her to relax in with no worries.”

Me too Rena! I also wrote about some of the blessings I received as a care partner to my Mom who died on August 17, 2016:

1) Time

Had Mom not developed dementia, I likely would have stayed overseas for several more years. On my return to Canada, I would probably would have chosen to live in another part of the country, further away from her, somewhere far to the east or west. Because of her illness, I spent about three months a year with her from 2005 to 2011. I lived with her 24/7 in her own home for a year (2011/12) and saw her virtually every day after she moved into a nursing home in November 2012.

Dementia gave us the priceless gift of time. I’m grateful to destiny for this thing that was meant to be.


2) Depth

Many people experience dementia as the gradual and painful loss of someone they love. In fact, Alzheimer’s disease is often described as “the long goodbye.”

For me, it was a long hello. It afforded me the chance to more fully understand who my mother was as a person. I saw it as a peeling a way of layers to reveal the essence of someone I’d known my entire life and who I grew to know in a different way. Our decade together from 2006 to 2016 gave me the opportunity to know her better than I ever would have otherwise.

Diving deep into our relationship has been scary, rewarding and unexpected.


3) Healing

In the process of being her care partner and understanding her better, I was also been able to explore aspects of our relationship that were hurtful and harmful to me. I found ways to let go of those parts and to grow others that better served my higher self and I hope hers as well. I feel extraordinarily fortunate to have cleared negative feelings from my side of our relationship before Mom left this world.

We had some amazing conversations and incredible experiences together. Many of them profoundly touched my heart.


4) Practice

Living “in the now” gets a lot of lip service. Living with someone who lived with dementia forced me to practice the principles of being aware in ways I had never done before. Dementia has no past, present or future. It is this second, this minute, this moment in time. There are no yesterdays or tomorrows; there is only today. Now is it. No more, no less. The practice of being more present in pain as well as joy is a great gift. It creates a deeper connection with self and the universe.


5) Opportunity

The experience and the process I went through with Mom taught me a multitude of new things about dementia, music, compassion, conflict, communication and more. Had I known in 2006 what I do now, I would have done things differently. On the other hand, I now have a huge opportunity to help others do better than I did.

I can take what I’ve learned and use it to reduce others’ suffering. I can contribute to the pioneering movement to change the way we engage people who live with dementia. All of these things are great gifts, and I have still more to share — stay tuned.

In the meantime, take a look a Rena’s post to see how she’s been blessed in different ways than I have been.


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Death & Dying, Hope, Spirituality

a field of poppies for heidi’s mom

13874960 - poppies in a field in black and white

We all die in one way or another. Too many in war. Too many in childbirth (still!). Too many too young. But we all die eventually. And we all leave loved ones behind. They key is to keep living until the end, and not to die before we’re dead.

There is beauty in remembering those who have left this place for another, and solace in shared grief. This video speaks to both. I would like to dedicate the video and this post to Heidi Sloss’ mom, who, though she probably didn’t know it, is part of the fabric of this blog. Heidi supported me from the moment she found me, which was early on in the days of Her comments helped me to keep going. Knowing I played a part in Heidi’s and her mom’s Alzheimer’s journey means a lot to me.

Thanks to your mom Heidi, for bringing you to me ❤


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Death & Dying, Hope, Spirituality

7 ways to honour living and dying with dementia

Dame Cicely Saunders live until you die

I love this beautiful quote by Dame Cicely Saunders, founder of the hospice movement. It captures what I wish for my care partner, myself and for all us: to live until we die, and to die in peace when the time comes.

Here are seven ways to honour those living and dying with dementia:

1) know with certainty that they there, always, until the very end and beyond. It may be more difficult to see past the external manifestations of the disease, but it’s even more critically important to let them shine.

2) respect their rights, especially the right to express themselves in whatever way they can – an angry word, a piece of resistance or a single breath may embody the experiences or wisdom of a lifetime.

3) listen carefully using all your senses, including your sixth sense, to connect with their soul and their spirit; let your broken heart be an open heart.

4) love them for who they are now, don’t waste a moment wishing they were somebody they were once upon another time.

5) celebrate their life while they’re still living, even as you grieve their imminent departure. Remember there will be plenty of time for mourning when they’re gone.

6) smile readily, laugh lightly, sing sweetly, touch gently, experience freely, hold tenderly, love boundlessly, and perhaps most important, let go gracefully.

7) understand the loss is in us.

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Hope, Life & Living, Love, Poetry

let me shine: a dementia rhyme to open minds

Gemstones cropped feature

I believe we must change the way we see Alzheimer’s disease and other forms of dementia and the way we interact with people who live with dementia. Why? Because a change in perspective is essential if we are to provide better, more efficient, more effective and most important, more compassionate care that helps people to really live until they die.

I believe we need to look at people who live with dementia as people who still have potential, not as “shells” of their “former selves.” To change our perceptions we need to change our words, our language, our actions and our interactions. I advocate on all fronts.

I understand how many people feel Alzheimer’s disease robs them of their loved ones, and I get how they are devastated by the disease and by loss they experience. But feeling that way does nothing to help people who live with dementia to continue to engage with life and love and the world around them.

Posts and poetry that focus on loss, grief and gloom abound; here are two stanzas from a piece entitled An Alzheimer’s Request:

I’m confused beyond your concept,
I’m sad and sick and lost.
All I know is that I need you,
to be with me at all cost.

Just remember that I need you,
that the best of me is gone.
Please don’t fail to stand beside me,
love me ‘til my life is gone.

Words like these perpetuate the myths we have about Alzheimer’s disease and other dementias and result in people who live with dementia being treated in ways that demean, exclude and isolate them. The words become self-fulfilling prophecies. Everything becomes dark, tragic, and devastatingly sad. But life itself is multi-dimensional. Nothing is all good, or all bad.

In the spirit of balance, I offer a different view inspired by dementia care pioneer Teepa Snow’s GEMS(TM) model. Listen here and/or read below:

Let me shine 5


Download a PDF of the poem “let me shine”

© 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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Care Partnering, Hope, Joy, Little things count, Love

choosing love and finding joy

8840339 - love. highlighter over background with different association terms. vector illustration.

Life’s challenges engender choices. Living with Alzheimer’s disease and other dementias, either as the person who has the disease or as someone close to them, brings challenges and choices into sharp focus.

As we live the journey, many among us choose “the dark side.” We become debilitatingly bitter and twisted or angry and grief-stricken. Even worse is that by choosing to view their experience in this way, people miss out on opportunities to find and give healing and light.

Others, like care partners Harriet Lovely Benchoff and Alice Cole, choose to give love and find joy in the process. Benchoff stumbled on the dementia “no longer” list, which names the kinds of things care partners may want to let go of (see the full list here):

I no longer have to be right about anything.
I no longer try to explain everything.
I no longer think I am the only one in this battle.
I no longer question.
I no longer feel guilty.

After reading the list, Benchoff, who cares for her mother-in-law, left this comment:

“I no longer wait for the ‘right moment” to hold her tight and tell her how much I love her.”

I was inspired by her words, and asked Benchoff if I might share them on MyAlzheimersStory; her answer was immediate and unequivocal “Absolutely!” She added this touching comment:

“This morning she was very confused and saying “help me, help me please.” When I asked how I could help, though she didn’t open her eyes, she knew my voice, and she said “hold me, hold me.” I was happy to. I cradled her head in my arms and held her as long as she wanted as she kept saying, ” I love you. I love you so much!” It such a precious moment for me.”

Thank you Harriet Lovely Benchoff for epitomizing your middle name and choosing love.

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Care Partnering, Hope, Life & Living, Love, Videos

mama don’t forget i love you

mama don't forget I love you


I strongly believe we stay connected to those we love and those who love us across vast distances of time and space and beyond life and death.

I recall this quote from one of my all-time favourite books: “Illusions: The Adventures of a Reluctant Messiah” by Richard Bach:

“Your friends will know you better in the first minute you meet
than your acquaintances will know you in a thousand years.”

Likewise, I believe we feel connected with the souls we love regardless of whether they seem to remember or recognize us on the superficial level of this life. If you feel disconnected or sad because your care partner with dementia doesn’t recognize you, these 20 questions might help.

Marty McGill lost his mom to Alzheimer’s disease. When I first heard the tune he wrote for her it made me cry because it was so similar to my experience. I left a comment; Marty immediately replied. He wrote:

“The last 6 months or so at home she would get up throughout the night. I slept on a loveseat those months so I could wake when she came down the hall. She would be smiling, dressed the best she could manage, ready to start the day, and I would redirect her back to bed. First thing I did every morning was get her dressed and sit her by the window while I fixed her breakfast. I would put crumbs on the sill to draw the birds in. She would watch them and talk to them. I miss my mom.”

Here is the beautiful song McGill wrote about love beyond recognition and about being a care partner:



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