Care Partnering, Life & Living, Love

fierce independence meets youthful arrogance on the way to the sing along

woman wrapping hands with pink boxing wraps. ready for fight

Flashback September 11, 2014: “I don’t think anyone has her,” one blue-uniformed student nurse says to the other when Mom and I stop to chat on our way to the sing along.

“Nothing the matter with that!” Mom slingshots back. Either they don’t hear her or they choose to ignore her.

“What’s her name?” the other blue-uniformed student nurse says to me, as if my mother didn’t exist. Her spoon clinks as she stirs her coffee. I bend down next to Mom’s ear. “What’s your name Mom?” I ask.

My mother has no choice but to look up at them. They’re twice her height because she’s in a wheelchair and they’re standing. They’d be taller even if she stood up – she’s smaller in stature than she once was. Osteoporosis, Alzheimer’s and now cancer have compressed her body. But her spirit is undiminished; she’s a towering presence in a shrinking container. My guess is they’re about one-fifth her age: young and quick, smooth and pretty and maybe thinking they’re smarter than she is. But she knows her name.

“Patty Macaulay,” she says. Strong. Fierce. A force to be reckoned with. She leans forward in the chair. Looks like she might pounce.

“Watch out girls,” I think to myself. She’s told them her name, but they don’t know who she is. I do. I see her in bits, pieces and fragments, and in her entirety. I came from inside of her. We’ve had ups and downs and bad hair days. I may know her better than she knows herself.


She is Patty Macaulay who organized the other kids on the block to shovel snow in winter when she was a mere child: she got the jobs, they did the work. She’s the one who won so many “tries” at the corner candy store that the owner didn’t allow her to pick lots for prizes anymore. She’s the once-aspiring actress who organized plays in which she starred and charged her contemporaries clothespins to watch and her father always said she had St Vitus dance because she couldn’t sit still for more than a minute; she still can’t.

50 11 mom & dad wedding
In blue velvet on her wedding day in November 1950

She is Patty Macaulay who didn’t get to finish high school because she and her older sister Jean had to go to work to help support her family and she wore blue velvet when she married a young man named Don whom she met in the bowling league at Northern Electric which became NorTel the stock market darling that went bankrupt which is ironic because their marriage also eventually collapsed after decades of success but long before it did she got pregnant four times and only had two children because the other two never got a chance at a first breath and when she miscarried the second time we almost lost her to associated complications when she was thirty-four and I was six and I never went to visit her in the hospital then but I’m making up for it now by being with her every dementia day.

She was a great hostess who threw amazing parties and made the best lasagna and Caesar salad with homemade croutons. She made blueberry muffins with those little wild blueberries from Lac St Jean which she bought specially at the Atwater market in Montreal. She taught me how to make spaghetti sauce, homemade soup and dill pickles. She taught skiing too, and she loved teaching the kids best; they called her Madame Pat and they wanted her to take them on the “big hill” and one little boy who had cystic fibrosis always remembered her and she always remembered him until he died when he was twenty something.

12 03 on a spring walk
Striding up the road on a spring walk in 2012

She walked, golfed, gardened, and swam. She collected antiques and was house proud. She fed the birds. She hugged her cat. She gave away countless baskets full of green beans and lettuce and tomatoes from her vegetable garden. She watered her window boxes from rain barrels. She matched people with places so successfully she became the “go to” realtor on Lake Memphremagog long before anyone thought to put “go” and “to” together to create an adjective and she had movie stars and rock stars and corporate magnates as clients.

She adored dancing, and was the life of any party she was at. She still sings and knows the words to hundreds of songs today’s student nurses haven’t heard before and neither had I before Alzheimer’s came to visit uninvited and never left. She’s fierce, funny and wise. She loves to laugh and play in the moment when she can. She loves me and pink and her family and she’s my mother and that’s not even the half of it believe me. She’s not a thing or an assignment for someone to “have” no matter how sick or old her body might be.


“I think someone has her,” says the first student nurse to the second after Mom tells them her name. My hands tighten on the handles of the wheelchair. My jaw clenches. Somehow I remain silent. Mom doesn’t; Alzheimer’s made off with her filter long ago.

“I don’t need any…any…any…any…any…” she machine guns back in slow vocal motion as the thought in her brain gets lost on the way to her mouth.

“You don’t need anybody?” Student nurse number one fills in helpfully. Bingo! 

“No. I don’t need you,” suddenly Mom is as clear as a blue sky in autumn. Student nurse number two says something neither Mom nor I can catch.

“What did she say?” Mom asks me.

“I don’t know Mom,” I answer as I disengage the wheelchair brakes. “It doesn’t matter.” We roll down the hall to the sing along leaving youthful arrogance and ignorance behind.


September 11, 2014

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Care Partnering, Challenges & Solutions, Hope, Life & Living

the main thing is to keep going


August 25, 2014: It’s raining cats and dogs and I’m worried.

I’ve just picked up Mom to bring her to my place for our weekly healing music session with Eric, and I don’t know how I’m going to get her into my house. We normally use the temporary ramp I set up over the front steps so I could wheel her into the house when she was unable to walk after being so sick in April and May. Thankfully, we’ve used the ramp differently than I had anticipated when I put it in place. I’ve only had to wheel her up it a couple of times, her ability to shuffle/walk having mostly returned after she knocked on death’s door in the spring and death didn’t answer.

IMG_7932Mom quickly learned confidently to walk with my assistance up and down the slightly-more-than-wheelchair-wide piece of plywood. Some say Alzheimer’s people can’t learn new stuff; I know from personal experience that’s not true. Even though we use it for walking not wheeling, I’m glad it’s there – it’s safer and easier for Mom than navigating the few flagstone steps to the front door. Mom’s BFF Gaby even “ran” down it during her last visit. And when I say last, I really mean it. I miss my/our angel Gabrielle 😦

Anyway, like I said, it’s pouring – POURING! – rain. Even if I park on the lawn beside the ramp we’ll both be drenched within seconds and the ramp will be soaked and slippery. I could bring Mom back to The Home, contact Eric and ask him to meet us there and play piano in the drawing room rather than guitar at my place. Or, Mom and I could try an alternate route: I could drive into the attached garage where we would be sheltered from the rain. BUT, and it’s a major BUT, there are two relatively high steps to get from the garage into the house.

I haven’t taken Mom up or down any stairs since February or March when we regularly used the inside staircase in The Home. That was before she was sick. Lately she’s spent most of her time in a wheelchair. I really don’t know if she can manage the steps. I do a quick risk/benefit analysis and think about what Mom would want. I resurrect our Alzheimer’s café conversation of a few weeks ago:

I choose the riskier route for the both of us, knowing I have a safer back-up if all else fails. We make it up the two steps and into the house with relative ease. The thing is with life, Alzheimer’s or not, the main thing is to keep going.

Thank you Mom, for being so brave. You inspire me every day.

August 25, 2014

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Care Partnering, Challenges & Solutions, Life & Living, Love, Videos

another day at the alzheimer cafe

Alzheimer's cafe take twoThings were going along swimmingly at the Alzheimer’s cafe: Mom had buttered the toast and was reading the sticky notes that sat on the kitchen counter by the fridge.

I was filling our plates and capturing everything on video, when at 2:15 it all went suddenly and horribly wrong! It’s easy for me to see my faux pas and its impact – can you?

And do you notice anything different in this clip than in the first one here? It’s all one great big learning opportunity LOL 🙂

August 23, 2014

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Care Partnering, Hope, Joy, Love

5 rewards I get for taking care of a loved one with dementia

I’m not a hero.

There are plenty more people who do far more than I for others who live with dementia.

But I get the same rewards the unsung hero in the short and joyful video below gets for doing what I do for people who live with dementia and their care partners:

It’s all good.

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Care Partnering, Death & Dying, Life & Living, Love

this is what love sounds like

July 27, 2014: It’s been a tough day, and it’s not my intention to bring Mom to my place for dinner but that’s where we end up.

As we eat, there’s an unexpected break in the clouds. She searches for words. I watch her, wait out the long pauses, count my heartbeats. Pieces of gobbledegook interlock to form a demented jigsaw puzzle. I decode and interpret. Images take shape. A deep and meaningful conversation ensues. It’s emotional and revealing. I’m reminded to remember she’s still here even though mostly it may appear she’s not. I’m grateful I began recording our conversations several years ago as way of remembering our journey. After dinner I take her to “the peeps.”

Once that piece of business is done, she closes her eyes so I can remove a bit of who-knows-what that’s stuck to a bottom lash. When I ask her to open them again I look into her soul without knowing it. “Hello,” we say to each other like we’ve just met, forgetting we’ve spent the last several hours and two entire lifetimes together. That’s one a kind of cool thing about Alzheimer – you can start with a clean slate pretty much anytime. I ask her if she’s ready to go.

“I think so, soon,” she says.

“Okay good,” I say. “Let’s head out that way.”

“Are you going to be alright going out?” she asks.

“Yes, I’m going to be alright,” I’m confident. “Are you going to be alright?”

“I don’t know what I’ll be doing.” She’s honest.

“Then let’s hold hands.”

We shuffle our way out of the bathroom and the bedroom and into the hall on our way to the ramp and the car. She ambushes me at the front entrance. I’m on the outside, having already stepped over the threshold. She’s on the inside about to cross when she stops in her tracks and starts to talk. I don’t know why I pause and ask her to elaborate. Maybe it’s the tone of her voice. Perhaps it’s intuition. Whatever the reason, I stand there frozen in a surreal time and place, my hands in hers, my right foot wedged under the screen door to hold it open. In a couple of minutes it will start to rain. In the meantime, I’m amazed by her words and mine and by what love sounds like. My heart cracks open about half way through:

Almost a year ago to the day, we experienced a similar break in the clouds. Clearly our journey isn’t over yet. Good thing we’re strong.

July 27, 2014

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Care Partnering, Toward better care

the heartbreaking reality of caring for someone with alzheimer


“What is it really like to deal with the reality of Alzheimer’s?” reads the Quora question.

The short answer is: terrifying, demoralizing, exhausting, draining, all-consuming and thankless. It can also be uplifting, joyful, rewarding, magical, inspirational and enlightening. It’s a living roller coaster ride like none other. It pays to look at it from a glass half full perspective for the benefit of all concerned.

The 36 answers to the Quora question recount variations on the same tragic theme: the painful reality for many primary caregivers is a daily grind of repetition, frustration, helplessness and hopelessness which some willingly endure for love and others undertake because they have no choice.

I share this account by nurse Bianca N. Diesel because of the similarities to my own experience (no doubt the story will resonate with many others as well); Ms Diesel writes:

My mom just got off of 72 hour suicide hold because she decided that it was better to just end her life than to continue taking care of her mother with Alzheimer’s.  She has 2 brothers that haven’t helped take care of my grandmother at all so mom has dealt with grandma full time for the last 5 years.

Five whole years of grandma getting worse and worse.  We all almost stopped going around because just being around grandma for a short time makes US crazy.  An hour at mom’s felt like ten.

“Would it be a hassle for you to take me to Middletown, Brianna?”

“Grandma, you’re IN Middletown.”

Five minutes later.

“I need to go home to my house in Middletown.”

“Grandma, you live here and this IS Middletown.”

Looking puzzled, “I OWN my own home.  I need to go there.”

“Grandma, you live here with mom.  You sold your house years ago.”

Then mean, “If I sold my house then what did YOU do with the money?”

Repeat that 50 times.  And then she’d tell me I have a nice ass.  Also, Brianna is my cousin.  That was just the hour that I was there.  Mom dealt with that 24/7. No one wants to spend time there anymore.  No one wants to call mom anymore because you can hear grandma in the background, constantly interrupting with the incessant questions.

So, mom had a meltdown four days ago. She couldn’t face putting grandma in a nursing home and her brothers were being selfish with their lives. She couldn’t even sleep at night without grandma coming into her room multiple times a night and asking for a ride home.  One night she woke up to find grandma in the kitchen with a big knife trying to cut an apple. 

Another, grandma was out on the back porch with a few bags of clothes packed up, ready to leave.  Grandma had begun to urinate in garbage cans in her bedroom and had defecated in the floor in her bedroom more than once.  Mom had had enough. Grandma is in the hospital right now.  Guess she’ll be going to the nursing home this week. This is the reality of my grandmother having Alzheimer’s and how my mother attempted to take care of her without sending her to a nursing home.  My mother has rheumatoid arthritis and is in pain most of the time.  Also, she is a retired ER nurse.

*My grandmother died on November 14th, four months after I wrote this.  She died in the nursing home.

Like Bianca Diesel’s grandmother, my mother also died in a nursing home. That fact too, broke my heart.

If you are a caregiver, find support. Look for these support groups on Facebook:

  • Forget Me Not
  • MemoryPeople
  • Alzheimer’s and Dementia Caregivers Support Group
  • Dementia Aware
  • Dementia Caregivers Support Group
  • USAgainst Alzheimers

Additional sites, blogs and resources here.

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Care Partnering, Life & Living, Love

an open letter to people who think they know better

This post is dedicated to care partners worldwide, many of whom are unseen and unappreciated. On behalf of those you care for, thank you for all you do.

July 13, 2014: Dear random person who sees my mom from time to time and feels the need to point out she has bruises all over her body that look frightening and she has really declined a lot since the last time you saw her and she can barely walk anymore and she’s asleep when she should be awake and sometimes vice versa and you hardly recognize her as the person you used to know and you’re really shocked and feel bad seeing her like this and isn’t it sad and a shame and this is what you would or wouldn’t do if it were you and you would rather be shot than end up like her,

Yes, I know. I see Mom virtually every day. I spend endless hours and fleeting moments with her talking nonsense and singing and helping her to stand when she wants to. Every minute is torture; every second is precious. When she is able, she and I shuffle around the sun deck at the ElderJail in which you may have briefly visited her (or not) and in which she and I have spent hundreds and hundreds of hours together.

If you did drop in to see her, did you notice some of the flowers in the planters around the deck at the “care” facility are the same kinds Mom nurtured in her own window boxes, the ones she loved to water in the early evening with her green watering can and rain collected in the old wooden barrels at the southeast and northwest corners of the big red brick house on the hill where she lived for more than 40 years? You didn’t? What a pity!

She loves begonias, geraniums, petunias and impatiens. She had cosmos, daffodils, daisies and phlox in her garden. We joyfully rediscover flowers each time we explore the sun deck at The Home which is not really a home at all. It’s just a necessary evil on the road to her final destination.

Mom touches a wound on her face (2014)

I know by the way she rocks her body back and forth when she wants to get up and get moving, and by the look on her face and the feel of her hand in mine if she is able to stand unassisted. Mostly she’s not, so I am by her side whenever I can be. I know by the way she pats her hair that she loves the fact it’s “done,” and by the way she touches the cut on her face that it worries her.

I know the colour and brand of her nail polish because I buy it. I know when she had her last manicure because I did it. I know when her sleep is medicated and when it’s natural by the slackness of her mouth and the sound of her breath.

I change her “diapers” and clean her bottom. I recognize her wheelchair by the stain on the seat. When she needs me to, I feed her like a baby. When she doesn’t, I celebrate that she can lift a fork to her mouth and feed herself. I have cried with her, comforted her and felt the sting of her acid Alzheimer’s tongue. I help her engage with her shrinking world, not simply exist in it.

I see her in ways you can’t even begin to imagine. I see us reflected in the mirror of each other. I pray for her to stay and go. I watch her look death in the eye and grab life by the horns every day despite her illnesses. I am her cheerleader, her advocate, her voice. I am her child/mother. Our souls are linked; our destinies are intertwined.

Who are you? You are a casual observer making ill-informed assumptions and coming to erroneous conclusions based on incomplete information. I have experienced first hand the effects of decisions I’m told are in her best interests, but which in reality have little or nothing to do with her health and well-being and everything to do with convenience, reducing costs and conserving her wealth for someone else’s use once she’s gone.

The effects of the decisions in which I have no say include the cuts and bruises about which you feel compelled to apprise me. Your thoughtless and insensitive comments add salt to other wounds you cannot see. You don’t know me. You don’t know my circumstances. Neither do you know my mother or hers.

Next time you run into me on the street or at the theatre or outside the care facility or even inside the care facility and are tempted to comment, judge, berate or advise me on aspects of my mother’s condition or her care or my role in her life, please consider all of the above and mind your own business instead of mine.

If and when I want your advice I’ll ask for it.

With gratitude,


P.S. to all my beautiful friends and acquaintances worldwide who give me oodles of unconditional love and support and share their wisdom and experiences with me when I solicit their input: thank you, I love you and I am so grateful you are here to hold my hand ❤

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Books, Care Partnering, Life & Living, Memoirs, Resources

6 more Alzheimers memoirs worth reading

Leaving TinkertownFormer caregiver and author Martha Stettinius and I dive back into the growing tidal wave of information and perspectives on Alzheimer’s and dementia caregiving  with six more top reads in the memoir category (the first seven are here).

1. Leaving Tinkertown

Tanya Ward Goodman, 2013

Stettinius: With exquisite detail, honesty and humor, Goodman describes her struggle to come to terms with her father’s early-onset Alzheimer’s. I highly recommend this book for any reader, not just those who have a loved one with dementia. To read my full review of this book, click here.

Continue reading “6 more Alzheimers memoirs worth reading”

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

the cosmos and coming full circle


June 25, 2014: We start halfway down the long side of the sun porch, and inch our way west toward the stone’s-throw-away village center and the lake not far beyond, both of which may as well be part of another solar system. In her heyday Mom knew the village population and the length of the lake as well as the price per linear foot for property directly on its shore. She could quote in a heartbeat what might be got or paid for a house in the countryside beyond.

“What’s your budget?” she would ask potential clients soon into telephone conversations generated by her newspaper ads. It was a quick way to separate the wheat from the chaff.

This afternoon our world is contained by the elbow-high white metal fence around The Home’s 20 meter by 15 meter sun porch, which in turn is surrounded by a mix of deciduous and fir trees. A little like Noah’s ark, the porch is populated by things in twos: the two of us, two tables and their shading umbrellas, and an assortment of two dozen or so chairs, some around the tables, others scattered about in pairs.

Mom is able to get up from her wheelchair on her own today. From her clearer eyes, more alert demeanor and ability to “walk” I feel she must be getting less anti-psychotic medication lately. We make the most of the opportunity. She puts her right hand in my left. At first she holds it firmly, her fingers wound around my own; I keep mine open, light and responsive. I notice how soft and cool her skin is, like the breeze on my cheek.

I guide her to the fence. She reaches her left hand toward it, as someone would feel for something in the dark when they know it’s there but aren’t quite sure exactly where. It’s one of the signs the way she “sees” things is changing. She focuses on moving forward. I focus on her. This is our universe. I listen with my hand for the barely noticeable changes in pressure that indicate what she needs from me. I close my fingers a little around hers when she squeezes mine, then loosen them again when hers relax. It’s important that she feel as competent, capable and independent as possible. She takes a step. And then another.

“You’re doing great Mom,” I say.

“I hope so,” she replies. A pause and then: “I wish I could do better.”

“You’re doing great Mom,” I repeat.

“Thank you,” she says. I’m amazed and grateful when these thoughts and sentences emerge fully formed from her Alzheimer’s fog. It reminds me she’s still in there, hidden most of the time, but in there nevertheless. I uncurl my fingers again when hers lighten, lift and float just above my open palm. She walks alone for a few steps, leading herself down the metal railing with her left hand. Fat plastic planters alive with colour interrupt the relatively thin line of the fence every few feet. I enclose her hand gently as we approach the first one.

“Aren’t those beautiful flowers in the planter Mom?” It’s an “obstacle-ahead” warning disguised as a question so she doesn’t falter when her hand arrives at the planter.

“Yes, beautiful flowers,” she repeats. Her eyes are fixed and angled toward the ground nowhere near the blooms. Parroting is her way of carrying on a conversation. Whether she actually sees or understands is irrelevant. The fact that she’s engaged with life is what counts.

“These purple ones are lovely,” I say when we get there. “And look, here’s a pink geranium. Your favourite.”

“A pink geranium,” she echoes. We’re stopped now.

“I can’t remember the name of this mauve one Mom. You have them in your garden, but I can’t remember the name…” I search my own faltering memory.

“I don’t know,” she says.

“Cosmos.” It comes back to me.  “It’s a Cosmos. I wonder if it smells?” She’s very close to the edge of the planter; a single Cosmos stretches toward her. She bends into the flower’s center and sniffs.

“Yes, it smells nice.” When she pulls back she has a dusting of yellow pollen on the end of her nose. I laugh and blow it off. She squinches her eyes a bit. I forgot to warn her.

“You’re nose was yellow Mom!”

“It was?”

“Yeah!” I laugh. I smell the Cosmos too. It doesn’t smell of anything to me.

We continue our expedition, punctuating it with stops at each of the planters where we replay variations of the same conversation over and over again. When we walk Mom is intent on putting one foot in front of the other. Just as we all are in different ways at different stages in our lives. At this time, for her, each step is a marathon requiring her full attention. I espy a black cat sunning on the lawn below. I point him out.

“He’s not doing much of anything,” she says. I wonder if she has really seen the cat or if it’s a random good guess. She’s pretty good at good guesses despite her dementia. She’s also great at filling in the blanks once I supply her with the words to do so. Eventually we get to the wooden birdhouse in which chickadees have been nesting. Last week I watched the parents fly back and forth with food, and heard the youngsters make hungry noises inside. Now the house is quiet. There’s no flutter of parental wings or youthful chirping to be enjoyed. The family has flown the coop.

“The chickadees are gone Mom. There were babies in the birdhouse, but they’re gone now.”

“Oh dear.”

“It’s okay Mom, they learned how to fly. Now they’re out exploring.”

“That’s nice.”

We’re almost back to where we started halfway down the long side of the porch’s perimeter. The sky remains infinitely blue and cloudless. The trees, the fence and the flowers create a border around a world that expands and contracts like we do as we breathe it in and out. This is our universe today. It’s taken us twenty-five joyful minutes and two roller coaster lifetimes to come full circle.

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