Unveiling Five Personal Stories
These five individuals are affected by dementia. Three have been diagnosed, while two are caregivers for a family member with the disease. Here, they tell their own first person stories of their experiences, explaining that they are #StillHere.
Cathy Hurd – Wife and Caregiver
Don de Vlaming – Diagnosed with Alzheimer’s Disease
Tanis Rummery – Diagnosed with Vascular Dementia
Gary Quinton – Diagnosed with Alzheimer’s Disease
Rachel Smith – Daughter and Caregiver
#StillHere: Attaining Peace of Mind with Cathy Hurd
The thing is, I get peace of mind when Boz is well taken care of: when he’s happy, I’m happy. Right now, it’s all about him…I always enter into his world so we can manage life together. We wake up every morning with a smile and a kiss and we look forward to what the new day will bring.
I recognize that I should do more for myself, like getting back to the gym. I get respite through provincial programs, but it only allows me enough time to shop and clean. I think more supports need to be made available through government funding. That would allow me and others in my position to continue caring for their family member at home without having to put them into care – something I would never do to Boz.
I get together informally with other caregivers when Boz is in his support group at the Alzheimer Society. It’s very comforting. We share stories, and it’s not always about the hard times. We talk about the positives, too – it’s life giving to share these things.
Also, I got some respite recently when my sister-in-law and daughters kidnapped me. They took me out for dinner, and we got a hotel room, just for fun. I slept for 12 hours straight! I was well rested when I got back to caring for Boz.
#StillHere: Sharing Ideas with Don de Vlaming
I have Alzheimer’s disease, and I’m still here. I attend a support group at the Alzheimer Society of Manitoba for people with dementia. We share ideas and relate to each other beautifully by talking about people’s interests. When I look around the room, it doesn’t seem like anyone has dementia because we are all just friends talking.
But out in society, sometimes people have expectations that we can’t meet, and we are treated differently. They don’t realize that while we live in the same world, our world is not quite the same as theirs, even though we are still the same people inside.
In reality, in our group, we have more ability to communicate amongst each other than many families. The reason is that in families, people can take things for granted. In our group, we can’t. We have to work on things and we have to be good listeners. We are all still functioning – maybe not in the same way as the rest of society, but we are enjoying the socialization.
The biggest killer for us is loneliness. We are all friends in our support group, but my hope is that people out there will include us and encourage us. If you find topics we are informed about, we’ll talk about them. If you ask us about our talents, we’ll share them. Just like anyone else, we want to be included and respected.
#StillHere: Being Honest with Tanis Rummery
I have vascular dementia, and I’m still here. It’s been a few years since I got the diagnosis, but I am managing very well. It’s true that I can see changes in myself, but I still live in my own apartment and I volunteer at the Agape Table. I also attend my support group at the Alzheimer Society. It’s been a lifesaver for me; the great leadership and deep friendships I’ve formed have helped to keep my spirit strong.
I’m lucky that I’m still quite independent, and I think I’m living well. I have friends who understand. If I miss a word in the conversation, I say, “You get the drift!” My friends don’t ask me to search for the word.
People need to know that they can talk to someone with dementia. We want to be treated well…we don’t want to be treated as though we are unstable or crazy. But sometimes it’s hard to tell us from anybody else because we don’t necessarily have wheelchairs or white canes. So if I’m struggling with something, such as finding a product in the store, I tell the clerk that I have dementia. I’ve found that people are happy to help.
I think that by being honest, we can create awareness in others who may not understand dementia. Once they see us as people who just need a little help sometimes, they’ll see us as who we are: people who are living their lives in their own way with dementia.
#StillHere: Enriching Life with Gary Quinton
I have Alzheimer’s disease, and I’m still here. When I was diagnosed in 2012, I took a positive approach and said, “Okay, this is who I am; it’s part of my life.” I decided to maximize what I’ve got rather than be depressed about it.
I also chose to be physically active because early in life I learned that physical activity raises my spirits. I got back on my bike, and I even ride in the winter – it’s exhilarating! I can honestly say that giving up my driver’s license enriched my life because I became more aware of the seasons and the large scale openness of the landscape.
With other people, I use candor. If someone doesn’t know me, it helps to put my cards on the table and tell them I have Alzheimer’s disease – then they won’t feel snubbed if I forget their name. My attitude is, if there’s a problem, don’t pretend it’s not there. Let’s analyze it and find coping strategies and cures. The Alzheimer Society is doing a really good job of getting the word out so people understand.
I had a lifetime teaching career, and I have supportive friends who I taught with for years. I meet them and we go for coffee or bike rides. These outings keep me in touch with other people and get me out. I want to stay open and see all the possibilities; my goal is to live life to the fullest as best I can.
#StillHere: Staying Positive with Rachel Smith
My father has Alzheimer’s disease, and I’m still here. This was not something I expected to go through at age 26. It seems like just a few days ago I was a little girl and he was taking care of me. Now, I am taking care of him.
The role reversal started the day we got the diagnosis. Both my parents were in shock, so I was the one asking the questions. Now, even though I am the youngest in my extended family, many of my relatives come to me with their worries, and I have become a good listener. Taking on a mature role like this is also something I never imagined would happen.
I hope that one day Dad will be able to walk me down the aisle and hold my future children in his arms, but I fear that he may not be able to when the time comes. But instead of worrying about the future, I have decided to appreciate every moment I have with him. Despite what my dad is going through, he still has a positive attitude and a smile on his face. I cherish each story he tells and conversation we have. My time spent with him transports me to a time before the disease.
I share my feelings openly, and I have written about our situation, keeping a positive light on the many challenges we face. By sharing and focussing on being “still here,” I find I am able to enjoy the moments that we still have.