Sharing my experience with dementia, by Maggie Weidmark

Maggie Weidmark features this week in our weekly blog series, one of our members  from Canada, who travelled to Puerto Rico to present at the 29th Alzheimer’s Disease International conference in the Living with Dementia session.  It was wonderful to meet her, and have her join forces with Dementia Alliance International. She is eloquent, and very brave in sharing her person story of living with younger onset dementihave it  and agreeing to having it featured here. Thank you Maggie.

Uploaded onto our Youtube channel, here is the recording of Maggie presenting, with her full speech notes, which she has very generously  agreed to share.

Sharing my experience with dementia

Maggie Weidmark, ADI Conference, San Juan, Puerto Rico, May 2014

My experience with dementia started four years ago, in April 2010. I was a Public Health Nursing Manager, supervising a team of about 20 nurses and support staff. I was well-liked and respected, and staff appreciated my open door policy – if you had a problem, I was willing to listen.

Behind the scenes, however, I was struggling. I was making mistakes. I gradually became overwhelmed at work, without knowing why. I was tired and depressed. I was struggling with things that had once come easily. I was forgetting things, though at the time this was less obvious to me than to puzzled co-workers. I was working longer hours than ever before, and yet still couldn’t keep up. In my mind I believed all of this was just the result of job pressures and a heavy workload, made worse by the stress of changing to a major new assignment.

One day everything changed, and my world was turned upside down.

It happened on a Friday afternoon. I was summoned to our head office, where I was called into a meeting with two of my bosses, both of them health professionals, and a rep from HR. I honestly thought “Oh-oh! I’m about to be fired!”

I was wrong. The meeting was about my weak performance, but it didn’t have the outcome I expected. I was told to see a doctor, and put on short term disability leave.

I don’t know who among my colleagues was the first to put two and two together, and put forward the idea that I might have a medical problem. I didn’t see it in myself, and neither did my husband or daughters. I’m sure it took someone with an awareness of the symptoms of dementia to see what was not at all obvious to me.

This is how my journey with dementia began. One day I was a working professional, and the next I was not. I was only 58-years-old. Work was a huge part of my life, something that I was very passionate about. I had not even thought about retirement, or what I would do when my career was over.

It took about six months, and consultations with a number of specialists before there was even a tentative diagnosis. Were my memory problems due to stress? What about my bouts with depression? My husband told the doctors that I was a workaholic, sometimes still at work until 8 or 9 at night, many hours after everyone else had gone home. Was I bi-polar? Or could I have all of these things, and a brain disease too?!

There was no quick diagnosis. The results of a SPECT scan seemed to show some shrinkage in the front of my brain, confirming a tentative diagnosis of frontotemporal dementia. A year ago a researcher at McMaster University in Hamilton, Ontario put me through about 5 hours of memory and cognitive testing, and concluded that I had Alzheimer’s disease. A second SPECT scan, about two years after the first one, appeared to show an improvement in my brain. So I’m not sure what I have, but it looks like all of that Lumosity and Mediterranean food really paid off!

The lack of a clear diagnosis is almost a mixed blessing. On the one hand, it suggests that my symptoms are not advanced enough to put me in this box, or that one. And it’s not like I’m in a race to get to the finish line, is it? On the other hand, it’s difficult not knowing exactly what’s wrong. For a long time, and sometimes even now, I find it hard to believe that I even have dementia.

In the first six months after leaving work I didn’t want anyone to know what I was facing. I didn’t have a farewell party at work, because I could not explain why I had left. I did not tell my friends. I did tell my closest family members, but insisted it had to be kept a secret. I pulled into myself, like a turtle.

My family respected my wishes, but eventually you realize that you cannot go on pretending that nothing is wrong. In an effort to cheer me up my husband Mark took me to see a comedian in a nearby city. He got us front row seats, which was nice. In the theatre lobby we ran into a couple who had both worked with Mark in the past. I found it difficult to make small talk, because I had been stripped of my identity. Who was I? What did I do?   I didn’t have any answers.

It was a big theatre with about 800 seats and a sold-out crowd, and strangely enough we found ourselves sitting right next to the couple from the lobby. I suppose the comedian was funny. He did a good Sean Connery impression. But about half way through the show my mind had wandered, and I began thinking about my problems. Without realizing it, I let out a long sigh. “Did somebody just groan?” the comedian said to the entire theatre – as he looked in my direction with a wounded look on his face. Mark came to my defence by deflecting attention away from me – he smiled and shrugged, and pointed to his left at the other couple.

I learned two things that night. One – it’s hard to keep secrets. And two – never sit in the front row.

I did have lots of practice telling my story to doctors and nurses, and it must have been on one of those visits that I either picked up or was handed a brochure for the Alzheimer Society of Guelph-Wellington. The brochure described the services of the society, which included one-to-one support, and support groups for those in the early stage of dementia, for partners-in-care, and for friends and family.

I called the phone number in the brochure, and a lovely woman named Kit came to my home. We sat at the table in our dining room and talked about my experiences. The brochure had said in big block letters, YOU ARE NOT ALONE. And it was true.

Kit brought with her a letter that was signed by seven people. I’d like to read the letter to you now.

“Hello.”

“We are a group of people living with memory loss. We come together twice a month to talk about what this means in our lives. These meetings are only open to people who are experiencing symptoms caused by diseases such as Alzheimer’s. We invite you to join us.

“Talking about our feelings is helpful. Also, information is available. We learn ways we can make days easier for ourselves and our families.

“Here are some exact quotes from discussions we’ve had about why this group has helped us so much:

  • The group is a source of humour.
  • It is a comfortable place to talk about the memory changes.
  • We can bring out our feelings without embarrassment.
  • It is relaxing.
  • Someone new may feel withdrawn but always ends up laughing and being a part of the group.
  • It is a great release.
  • We share a common predicament and learn from one another.
  • We are grateful that this group exists for us.

The letter went on to say “We hope that you will join us soon. Call our facilitator, Kit Papoff, and she will let you know when and where to meet. Looking forward to seeing you.”

The letter was signed by Gordon, Eric, Beverley, Moe, Wim, Carol and Jennifer, members of a support group nicknamed “The Reminders”. It was for people in the early stages of dementia. People like me.

I joined the group in December of 2010. Our group meets two times per month, every other week, for one and a half hours. The meetings are held in Guelph, which is a city about 100 kilometres west of Toronto.  I live in a small town about 20 minutes from Guelph, but I still have the privilege of having a driver’s license, and so I am able to get myself there and home again.

In the last three years I’ve met dozens of people with different types of dementia, facing a variety of challenges in everyday life. In a sense, my door was now open to a new group of colleagues, peers who were going through the same thing as me.

Sharing our stories through twice monthly meetings has helped me to accept my diagnosis, to gradually gain confidence in myself, to learn, and even be joyful! I made new friends.

I look forward to the support, education, social time and the empowerment that I have gained. We talk about the things that are going on in our lives, the happy moments, and the challenges. Although we are all persons with early onset dementia, we come from different walks of life, are different ages, and are at different places in the journey. Some people have been newly diagnosed, and are still in a state of shock, like I was. Others have been coping with dementia for years. We also benefit greatly from our group facilitator, an employee of the Alzheimer’s Society of Waterloo-Wellington who brings expert knowledge and counselling skills. We talk about research, and discuss recent articles or books about memory loss.

There is some continuity, but no group like this is static. New members are warmly welcomed. Some of our regulars have switched to other programs, but we still see each other at Alzheimer Society social functions. One man, Eric, sadly passed away. Our facilitator, Kit, has retired – I was so sad to see her go! She was wonderful. There is one man, a former geography professor who plays timpani in two orchestras – he’s been attending a dementia support group for 15 years!

My participation in “The Reminders” has transformed my entire way of thinking about dementia. I went from being sad, depressed, angry and embarrassed, and became much more open and optimistic. Partly this is because I realized that an important part of living with dementia, at least for me, is to increase awareness about the disease. When I think back to that fateful day when I lost my job, I am so thankful for the understanding and compassion with which my employer handled the situation – somehow, they got it, before I did.

My participation in the Alzheimer’s Society’s support group changed my attitude, and that got me out into the community. Mark and I joined our local lawn bowling club, which is a short walk from our home. In the winter the activity shifts indoors, and we play carpet bowling at a community centre. My mother-in-law and a friend I met through lawn bowling are my pals, and we regularly take in activities at our community senior’s centre, like walking and day-trips excursions.

As I gained confidence I began to share my diagnosis with others. Many of my new friends are older than me by 10 or 20 years, but that doesn’t matter – they are active, energetic, and like to have fun. I feel that I am accepted.

A year-and-a-half ago my husband Mark and I were invited to participate in a research group developing a curriculum designed for persons with early stage dementia. We belong to what they call a “hub”, one of three across Canada that are run by the participating universities. The purpose is to give persons with dementia, and partners in care, input into what topics and content are to be covered by the project. The hub, which meets monthly, has given me another opportunity to connect with people, learn about dementia, and make a contribution that will hopefully help others. My attendance at this conference was made possible by the Murray Alzheimer Research and Education Program at the University of Waterloo, who invited me here – thank you so much Lisa.

Before I finish, let me return briefly to the subject of support groups. Last fall the meeting place of “The Reminders” was relocated to a new space that added another 10 minutes to my trip. Mindful of that fact that I will not have my driver’s license indefinitely, and also of the hazards of driving in Canadian winters, my husband Mark approached the Alzheimer’s Society and asked if a support group for persons with early onset dementia could be started in our town. They said yes! Our first meeting was two weeks ago. Aside from our facilitator, Lindsay, there was just myself and one other person – a man who was newly diagnosed. I am hoping the group will grow in numbers, as more people become aware of its existence.

For now, I am hoping to keep up with both support groups. The new one will only meet once a month until it gets established. I also want to hang in with “The Reminders” once a month.

For anyone thinking about support groups for persons with early onset dementia, I say take the plunge! Attend the closest one you can get to, or ask your local Alzheimer’s organization to consider bringing services to your community.

Thank you for listening to my story.

Copyright Maggie Weidmark

Editor: Kate Swaffer