My life with Alzheimer's disease by Gary Quinton

In Nov 2012 I had the privilege of speaking at the Manitoba Alzheimer’s Conference.  I spoke in a large gym.  Tables and chairs were set up throughout the entire space. I was nervous. The conference participants were people with Alzheimers and family caregivers.  I was going to talk about Alzheimer’s Disease as a terminal illness.  How was I going to do this without being offensive… How were the people going to receive this information?

As I spoke someone caught my eye in the left hand, front, corner of the room.  A nice looking man.  He smiled, nodded, smiled and nodded.  I thought, “this man knows what I am talking about… he must be a family caregiver or a nurse or doctor”.

When the session was over a few people gathered to speak with me. After a bit  I turned around and there was the man with the smile.  “Who are you?” I asked.  And he told me his name, “Gary Quinton”.

“But WHO are you?” I asked again, trying to find out “Why do you know this information? Why did it resonate with you?”

Gary then proceeded to tell me his story.

I am honoured a year later to receive his story via email.  He is happy for me to share his story with you. I am grateful that he has also shared his story on video with one of my favorite resources… it should be available in the coming months…. stay tuned!

Thanks to Gary – the man with the smile, an incredible attitude and a wonderful wife!

My story

By David Gary Quinton

I will start with giving you my age. I am 71 as of last Dec.

My wife Judy realized something was wrong long before I did. For me, the first real indicator happened while I was teaching a tai chi class. I was giving an example and saw my students look at each other a little quizzically. I asked them if I had been repeating myself and they said yes. I realized that this had been happening a few times already.

The diagnosis was not a shock but it was definitely a blow for us. I knew immediately that I had a choice to make. I could go downhill and get depressed or I could make the best of the hand I had just been dealt. Not even a minute went by before I decided to face this thing head on. I have not wasted time regretting that impulse but it does create some questions for others.

I want to maximize my time and do what I can, when I can, for as long as I am able.

Being honest and straightforward from the start has allowed our family and friends to be open with us. A classic example of the support I receive is the two friends I meet with every Wednesday afternoon to go walking, skiing, or cycling. This helps me to connect with friends and allows Judy some time for herself.  What a wonderful gift they are giving us.

The decision to tell people that I have Alzheimer’s has never caused me regret.

It is part of me, my circumstance. I operate on the basis that I will have lapses.  I will forget names, and other things. I don’t mind being reminded of details.

I am comfortable with explaining my situation to anyone who wants to know, or who has dealings with me.

A change was to surrender my driver’s licence. I took a breath and did it. As a result I have discovered two things: one, I still love riding a bicycle, and two, bus drivers, and bus rides, are wonderful. When I am unsure of my situation, I tell the bus driver I have Alzheimer’s and get confused sometimes.   Unfailingly, he or she is most helpful and clear. When I travel around Winnipeg I can rubber-neck and enjoy the scenery and incredibly varied architecture we have in our city. A further bonus, I am in great shape now and have ridden through the winter and into this summer.

*When I meet people, I tell them my name and that I have Alzheimer’s disease and apologize for likely needing to ask their names again and again. I have yet to see anyone act as if offended. (this is really liberating for me — I was always poor at recalling names)

The clients and people who volunteer and work at the Alzheimer’s Society are helpful and wonderful.  It is like going to a new school and meeting class-mates who are newcomers too. We bond pretty quickly.

The society provides material and programs that are informative and reassuring and, best of all, practical. We all get a chance to share — and I am learning to listen a bit better too.

About me, I am a father of two daughters and a grandfather of three grandsons — what gifts I have been given.

For my working years, I taught junior and senior high school English for thirty years — loved them all. Who but a fortunate person could be exposed to so many wonderful people and experiences as I was there?

I am retired now, that is like a long holiday — with house and ground – keeping privileges.

Last, but so easily first, my partner, Judy, has been a wonderful support, very active, patient,  adaptive and energetic — so I never could get in a funk if I so wanted.

Judy and Gary Quinton, Kath Murray, MB Alzheimer's Conference 201

Music Therapy in Manitoba

I was thrilled to hear Katy Jacobs at the Care4U conference.  Katy not only talked about music therapy, but she pulled out her guitar and sang to us! I can not imagine a better way to teach or learn about music therapy!

Katy Jacobs

Music Therapy in Manitoba is a video documentary about music therapy and the history of music therapy in Manitoba and in Canada. an interesting video.  Take a few minutes and watch it.

Question for you…. What do you think about music therapy?  Is this something that only registered music therapists can integrate in caregiving? Do you incorporate music care in your caregiving? How would you like music incorporated if you were to require care?

"People with Alzheimer Disease need to prepare"

On Saturday I spoke at the MB Care4U conference, a one day conference for caregivers and people with dementia. This was a new experience for me, and quite honestly I was worried that I might offend or upset people with my presentation.   This was interesting, for me, as I am not usually worried about using the “D” word and discussing “palliative care”… but the idea of talking about palliative care in a large gymnasium, to people with dementia, and to caregivers, was definately of concern to me.  I was not sure how I should/could approach it in a way that was helpful and not hurtful.

The topic for my keynote was “It takes a village”.  My hope was to introduce participants to: the challenges of living and dying with a chronic illness and to the benefits of a “palliative approach”being integrated in care.  I invited participants to include members of the hospice palliative team as part of their “village”, and linked them with resources including: Canadian Virtual Hospice, Manitoba Hospice, and Lotsahelpinghands.

As I spoke I noticed a man on the far left side of the big gym, right up near the front. He was totally focused on my presentation.  He had a warm smile on his face.  He nodded as I spoke.  I felt his support. I thought, “This man is a caregiver and he understands the connection between hospice and alzheimer care. He knows what I am talking about! I wonder if his wife, mother has dementia… I wonder if he is a nurse or a doctor….”

I was thrilled when the man approached me after I finished speaking. I asked “Who are you?”  and he gave his name – Gary Quinton.  “But who are you?  What brought you here?”  I asked.

Gary, with his warmth and smile responded “I was diagnosed four months ago with Alzheimer Disease, and what you are saying is so true! People need to prepare

Imagine my surprise. I mentioned my concerns, and wondered if he was at all surprised or worried about my approach.  He responded, “No, this is what I need to understand. Do not isolate me because I have dementia – that is what they used to do with people who had cancer… don’t do that to me!”

After lunch I met with Gary and his wife Judy. What an inspiration to meet them both,  and to witness their openness and willingness to share themselves with the community.  I look so forward to following them, and learning more about them in the months and years to come.  Thank you Gary.  Thank you Judy!

Gary and Judy Quinton at the Manitoba Alzheimer Society Care4U conference

See CANSTAR community newspaper. for an article about Gary and Judy.

Almost 300 family caregivers filled this conference.  The most common comments I heard were “It is so nice to know that I am not alone.  It is so good to know others who understand and who value what I am doing.”

During lunch I sat with Shelley, Judy, Leslie, Cathy,…. who shared their stories of caring for their loved ones. They spoke of committment.

I was intrigued by Shelley’s story.  Shelley has a client whose spouse has dementia.  The client invited her to come to the conference because she knew that Shelley’s mom also has dementia.  In the end the client was unable to come, but Shelley came! Smart client!

If you were at the conference, I would love to hear your thoughts.  Please comment.

All the best to the participants and conference organizers! And many thanks to Maria Matthews who planned the conference!

Warm regards,

Kath