gradually back to the future


September 25, 2016.

Dear MAS subscriber:

In October 2015, under threat of being denied access to my mother and potentially being the subject of legal action, I removed more than two hundred and fifty posts from this and other sites and blogs that I run.

I wasn’t afraid of legal action, but I was afraid of being denied the right to see Mom. My daily visits meant the world to both of us, but especially to her–they kept her going. Her best interests were my primary focus. Now that she’s gone, I’m republishing some of the posts I had to take down. That means that if you subscribed to MyAlzheimersStory before October 2015, you will receive posts you may already have seen before. Also, over the next little while, all subscribers will get more posts than usual. Normally, I post two or three times a week. This frequency may change in fits and starts, and you may sometimes receive more than one post in a day. I plan to flag and tag these posts with the word “Flashback”  so you know which pieces are archived material that’s being republished and that you may or may not wish to read. Some of the posts may have broken links that are directed at content that has not as yet been republished. Sorry for that.

I also apologize in advance for any inconvenience or temporary annoyance the republication may cause to longtime subscribers. On the other hand, it gives newer subscribers the opportunity to see content they otherwise might miss.

I fully intend to continue sharing Mom’s Alzheimer’s story as well as my own–there’s so much left to say! I also intend to keep advocating for better eldercare, particularly for those who live with Alzheimer’s disease and other dementias, including pushing for change in our broken eldercare “system,” speaking out against the inappropriate use of antipsychotic medication as well as elder neglect and abuse, and changing the way we see Alzheimer’s disease and other dementias and the people who live with them.  I will also champion the cause of dementia care partners worldwide.

Thanks for your patience as the story continues to unfold, sometimes in ways that are more like a chopped up ball of yarn than a straight line. Thanks to Lemony Gregg for permission to use the beautiful image (a cropped version of her photograph entitled “Gradually”) that tops this page. There’s lots more of her stunning work here: LemonyShots.

I appreciate your understanding and support,

160428 Susan's new specs





Hope, Love, Music, Spirituality

give me jesus on the line

33449964 - retro and elegant telephone on the heaven

March 26, 2015.

I get Mom settled on the sofa.

“That’s going to be nice eh Sue?” She says. “Is it going to be nice the last one?”

“Yes, it will be,” I reply. Her words remind me there’s something important I want to say. I take her hands in mine. “Mom, I want to tell you something,” I begin. “Just in case something happens and I can’t come to see you, don’t worry about it OK? Her eyes lock on mine. All of sudden she is completely focussed.

“Oh,” she says low and quiet.

“It’s not because I don’t want to be here. Somebody might stop me from coming to see you,” I say.

“Is that right?” Here voice is even softer and lower now.

“Yeah.” I affirm.

“Like who?” She asks.

“I don’t know Mom,” I lie. “But I just wanted you to know that if it happens, if I don’t come, it’s not because I don’t want to.” My voice cracks. Tears threaten.

“No, I know,” she says. “I know. I know it’s not want to.” Bits and pieces get lost on the way from her brain to her mouth. But she has divine help getting her message across.

“I don’t want you to want the the the thing,” her words skip and stumble in a dementia rush. “You know…because it’s not my thing. And I don’t like things like that.”

“I know Mom,” I try to comfort her despite my fear and despair.

“I don’t like it like it…I I I I just don’t like it. Because it belongs to the the the the the…. It belongs to…. It belongs to the person it belongs to.” She’s hit the nail on the head. “And I remember that that remembrance. Near that person I have to… I feel that it’s right or wrong, you know. I don’t want it to be a wrong thing. It won’t change any way at all,” she continues. “It’s not going to change anything. Because it’s all, it’s all, it’s all the things. It’s the singing of everything.”

It’s the singing of everything. The totality is meant to be. There’s purpose behind the pain. Her wisdom sometimes blows my mind.

“I just wanted you to know Mom. I didn’t want you to be upset or anything,” I say.

Click on the player if you would like to hear the full unedited audio version of the conversation. It’s about eleven minutes long.

“No, I didn’t want to be upset. You know that,” she says.

“I know but I wanted to tell you in case you don’t see me that it’s not because I didn’t want to come Mom,” I repeat. I know in her core she will understand why if I never see her again in this life.

“We know that Sue. We all know that.” Her voice is firm and strong. It gives me hope.

“So we have to make the most of the time we have together, Mom.” I squeeze her hands a little for emphasis.

“That’s right. That’s right. We have to get the silver sign. And that’s got to be signature. That’s it,” she says.

“Yes,” I say.

I’m glad I’ve  told her. As crazy as it may sound, she knows stuff, even though she has trouble articulating the depth of her understanding. She knows.

“You’ve been out running the roads this morning,” she observed the other day.

“You’re right Mom. I have been. I had to do some shopping,” I laughed. “How did you know? How do you know these things you have no way of knowing?”

She looked me straight in the eye and spoke her truth: “The Lord tells me,” she said.

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

can you hear the loons calling?

Sunset after a swim; August 14, 2012; Lake Memphremagog.

September 25, 2014

Dear Mom,

This is the first of two letters to honour your 86th birthday on September 27, 2014, and to remind us of the important things in our lives. This one is about swimming.

I must have been afraid when you took me for swimming lessons as a toddler. The teacher had one withered leg; he limped around the pool and reached out to me with a long wooden pole. There were no water wings, or floats, or other new-to-water-other-than-in-the-womb swimmers to share the experience. It was just you and me and the crippled teacher.

I also remember childhood picnics in a park that had a shallow round cement pond into which we plunged after the requisite hour-long respite to digest our peanut butter and banana sandwiches. Turns out the wait wasn’t necessary; swimming on a full stomach is safe as houses they now say.

Years after we lived a five-minute walk from Lake Memphremagog and we swam at will during the hot summers. Our piece of lakefront property had a shallow pebbly beach, and Dad put in raft for us to swim out to. There was a sandy spot on the lake bottom on the way out to the raft where I stopped to rest just before it got over my head. I didn’t like to touch bottom where it was muddy and yucky; I still don’t. I remember you standing on that sandy spot and holding me in your arms as the water caressed us. I was at an age where it was okay to be that close to your mother without feeling awkward. Fifty years later I’m at an age like that again, but in a different, deeper way. Torrents have since flowed under the bridge of our lives.

One pre-teen summer I yelled “Help!” from somewhere near the raft, and was punished with three swim-less days for crying wolf. I deserved it. Another summer you introduced me to the pleasure of “skinny dipping,” which we did after dark under starry skies. I adored it.

Although you’ve always loved the water, you’ve never been a strong swimmer. But you encouraged me to be. I earned my Red Cross bronze medallion in my late teens and worked as lifeguard at a local campground one year. When I was at university I swam almost every day; it helped me stay sane and centred. Three decades down the road at peri-menopausal 49, I completed my first sprint triathlon. My training included an hour each day in the pool. Again, it helped me stay sane and centred.

In 2005, while body surfing off Jumeirah Beach in Dubai, I was ground into the seafloor by a wave like  a cigarette butt might be crushed into an ashtray. The emerg doc said I was lucky not to have broken my back. He put four stitches in my lip, salved the raw scrapes all over my face and sent me home with my tail between my legs. I never told you.

Your lakefront lot provided a seasonal refuge for forty years when you lived in the big red house on the hill. There was no pebbly beach there, rather a direct slate drop to the water fifteen feet below. You had solid wooden stairs and a dock built. Someone put a ladder into the water in the spring so you could easily get in and out; it was taken out in the fall so the ice wouldn’t break it.

You and I swam from the dock hundreds of times, often naked even in the middle of the day because there was no one around to see or judge us. It was fun and naughty. We laughed and enjoyed the water’s sensuality. We were refreshed and rejuvenated; it was one of life’s simple pleasures. Afterward, we sat and watched the speedboats and sailboats zoom and slice by. In recent times you spotted the same boats over and over and over again.

“Look at that big boat Punkie,” you’d say and point.

“Oh yeah, that’s a big one,” I’d agree. A few minutes later you would repeat: “Look at that big boat Punk,” as you pointed. “Oh yeah, that’s a big one,” I would agree again. And so our softly broken record replayed: you forgetting what you had just said; me practicing patience with mixed success; the lake kissing the dock in little wavelets.

On July 22, 2012, we went down to the lake for a dip. The water was grey velvet and black. You swam alone and heard loons in the distance. You asked if I could hear them too. I filmed you with my iPhone. Last night, I stumbled across the video. Toward the end you are caught in the reflected light of the setting sun. As I watched, my heart filled with love, gratitude and grief. And I cried.



Thanks Mom, for teaching me how to swim.




September 25, 2014