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What’s love got to do with Alzheimer’s? A lot

What’s love got to do with Alzheimer’s? A lot

By Alex Westman

Mr. and Mrs. Alex and Donna Westman

My wife Donna and I met when we were just teenagers—she was 18, I was 16. Despite our youth, we understood early on that we had a deep connection. It was an amazing thing, really, and still is. There was magic in her and she saw something in me. I had a reputation as a bit of a scrapper, but she soon took care of that.

These days, I’m almost respectable. I’m a three-term municipal councillor in the Township of Lucan Biddulph, Ontario, and a 30-year veteran of the fire department. She made me who I am, and all these years later, Donna is still the love of my life.

Why am I telling you this? Because I want you to know that the love we share is the armour we wear when things get tough. And in 2009, things got really tough.

Mr. and Mrs. Alex and Donna Westman

That was the year she was diagnosed with Alzheimer’s disease. She was 47. I remember sitting beside her in the chair in the doctor’s office. I looked at her, and she looked at me, and I said, “we’ll get through this together.” And we have.

We’ve had help, of course. Donna’s sister Gale and our daughter Sara-Beth have been nothing short of amazing; their love for Donna shines through in everything they do for her.

My point, as I’m sure you are beginning to see, is that you can’t do this without love. This disease is big. It has teeth, and horns and claws. If we didn’t have love, this disease would destroy us both.

Now I don’t want you to think I live in some fantasy land. We’ve had our ups and downs. We’ve gone to marriage counselling. There were times we didn’t particularly like each other. But we always loved each other and we always knew we wanted to make it work.

Mr. and Mrs. Alex and Donna Westman

I remember vividly the spring following Donna’s diagnosis when we planted forget-me-not flowers in her garden. The garden has always been a special place where she tended to each plant as if it were the only one. The year before, we had planted daffodils for my parents who died of cancer. This spring, we wanted forget-me-nots for Donna.

When we finished, we stood back to admire our work. She put her head on my shoulder and I said, “It’s OK, sweetie. I’ll remember our life together for both of us.”

Mr. and Mrs. Alex and Donna Westman

Cracked: New Light on Dementia combines research, dementia and the arts

Cracked: New Light on Dementia combines research, dementia and the arts

In the spring and fall of 2013, I worked with a team of artists and researchers on the play Cracked: New Light on Dementia. I was brought onto the project because of my theatre background and because of my personal and professional experience working with people who have dementia.

The play is intended to inspire alternative ways of seeing people living with dementia, instill the importance of maintaining strong relationships with them, and reinforce the imperative for good ethical care. The play will enhance person-centred care with the help of funding from the Alzheimer Society Research Program (ASRP). The ASRP is funding performances in long term care settings to research how health care workers shift their understanding of dementia after seeing the play.

With the support of an Ontario Arts Council Theatre Creator’s Reserve grant (administered through Theatre Gargantua), I spent a month with the team – two weeks in the spring and then two weeks in the fall – acting as Dramaturge and Assistant Director. This means that I worked closely with the director/playwright, providing insight and support on the development of the script and the performance. I also attended the rehearsals with the performers and researchers, and gave feedback and suggestions as needed.

When I arrived at my first rehearsal, the team had already been working on the piece intermittently for about a year, discussing themes, improvising scenes, and exploring characters, storylines, music and movement, and drawing on the research and professional experience of the research team.

It is difficult to fully express how beautiful it was to watch the actors work, and to see how bravely, spontaneously and creatively they approached the material. In a word, it was breathtaking.

A highlight for me was that, before I came onboard, members of the team had held focus groups and informal conversations with people living with dementia, and these provided valuable inspiration for the creation of the piece. Then while I was there, we had the opportunity to visit a long term care facility, and were able to spend time with some of the residents and there, in both one-on-one and group settings.

The experiences, thoughts, words and insights that were so openly and generously shared with us were brought up and discussed time and time again during our rehearsals. These individuals had made a tremendous impact on all of us, and you can see some of these experiences and insights in the final piece. There is incredible truth in this play.

It was magical to spend so much time with a group of people determined to change negative dementia discourses through the theatre. Art can be a powerful tool for creating social change, as it tends to reach us on a deep and personal level, stirring something in us that perhaps cannot be reached through other means. The magnitude of our responses can sometimes even catch us off guard, and many times in the rehearsal process I found myself brought to tears.

Cracked is a truthful and nuanced story of dementia, where joy and grief, strength and vulnerability, and struggle and peace all come together in an intricate dance. It demonstrates the power of relationships, and, perhaps most importantly, it shows us that who we are – the very core of ourselves – remains intact throughout the dementia journey.

aynsley_moorhouse
Photo credit: Karl Ang

Aynsley Moorhouse, MFA, MSW, RSW

Alzheimer Society of Toronto    

 

 

 

 

The Cracked Ensemble

Director: Julia Gray

Performers: Susan Applewhaite, Lori Nancy Kalamanski, Sarah Machin Gale, Claire Frances Muir, Jason Chesworth, Tim Machin, David Talbot

Research Team: Drs. Sherry Dupuis, Pia Kontos, Gail Mitchell, Christine Jonas-Simpson

Co-Creators: Mark Prince, Mary Ellen MacLean

Set and Costume Design: Lindsay Anne Black

Music Director: Tim Machin

Stage Manager: Elizabeth McDermott

Assistant Director/Dramaturge: Aynsley Moorhouse

Scenic Artist: Ksenia Ivanova

Wardrobe Assistant: Alyksandra Ackerman

 

For performance dates and a full list of acknowledgements and sponsors, please visit: https://uwaterloo.ca/partnerships-in-dementia-care/re-imagining-dementia-through-arts/cracked-new-light-dementia