National Cares Day - One Nova Scotian Shares Her Experience
Tuesday, April 7 is National Cares Day – a day to celebrate and honour Canadian carers. At the Alzheimer Society of Nova Scotia, we recognize the hard work and efforts of the many dementia caregivers who provide support to a friend or family member.
Today we're sharing a local perspective from Darlene Carey. We hope her story encourages you as you continue on your caregiving journey.
"When we were little we thought our parents were the strongest, bravest, most capable people in the universe. They were our heroes. Then as we got older, we began to see them as the imperfect people we all are. But even through that new lens, my mother never lost the glint of being my first hero. I would always look at her with awe and wonder.
The most unnatural dynamic is when you have to start parenting your parent. As Jann Arden says, “It’s hard to be a mother to my mother.” And that is exactly where I find myself.
In 2005, Mom was diagnosed with Frontotemporal dementia at the age of 71. Six of Mom’s nine siblings were diagnosed with one form or another of dementia. Three have passed away and three are currently in nursing homes.
Before diagnosis, Mom was living a wonderful full life. Full of family and friends, fun with grandchildren, walking, cooking, camping, bowling, fishing, and travelling. Leading up to Mom’s diagnosis, we noticed things changing in her behavior. She began to be paranoid; thinking my sister and I were talking behind her back or planning things without her. She was also becoming disorganized and her personal care began to decline. And for a while we didn’t know what to do or where to turn.
Mom would describe her dementia in this way, “I can remember what I ate at my wedding supper, but I can’t remember what I ate for breakfast.” At this point, she was remembering that she was forgetting.
Mom’s diagnosis shattered me, but she met it with humour. She always looked on the bright side of everything. She was quick witted and loved to make people laugh. And because of her example, we use humour to get us through the difficult days.
When the doctor at the Cape Breton Regional Hospital’s Geriatric Clinic gave us the news, we were devastated and terrified. The doctor told us to expect further changes in her behaviours, memory, and personality. In contrast to our reaction, Mom reacted with her signature quick wit. She looked at us and said, “Well, I will be fine because I’m tough as nails and twice as rusty! “ We all laughed with her.
The Doctor also advised us to look into additional support for Mom and ourselves in order to live well after the diagnosis. It was important for us to realize that this was not a disease to conquer alone. There was help out there for us. The Alzheimer Society was waiting for our call.
I attended an Alzheimer Society education session where a gentleman shared his connection with dementia. During the session he spoke so positively about his experience with his mother that it inspired me to pick up my spirits. I went from the gloom and doom, gray cloud of emotions, to realizing that my mother is still enjoying life. That free program was the wakeup call I needed. It changed how I saw this disease.
Mom lived quite comfortably in her own home for quite a while; however, when I began to feel that things were becoming unsafe for her to be at home alone, I knew it was time to take the next step. I felt she was becoming a danger to herself when she began to leave the heat up full blast in all the rooms and began to burn food. We tried different interventions to keep the heat down. We changed thermostats and unplugged the stove, but that just did not work and she became more and more agitated. After five years of living well at home, I was now faced with tough decisions.
Then, the unthinkable happened, her doctor sent her for a mammogram and the diagnosis came quickly. Breast cancer. She was admitted to the hospital and had a mastectomy. While recovering in the hospital from cancer surgery, we received a call from Northside Community Guest Home. They had an opening. It was one of the most difficult things I have ever done. I had to change my mindset – to remind myself that whatever I did was for her and not for me. I needed to keep in mind that her placement in the nursing home was going to be difficult, however, I was doing this for Mom and not to her.
I was heartbroken for myself, but so happy for her because I knew that this was the best thing for her. She was finally safe. That first day was like the day I took my oldest child to her first day of school. It was all new. We were looking around, encouraging her with our words, saying she will love it here, telling her that she would make new friends, talking to the staff and trying to make sure that they knew 100% of the things Mom liked to do, what she liked to eat, etc. Then, as all parents do on that first day of school, we left her there and reassured her that we would be back.
When I look back on the last 13 years caring for Mom, I can see how and why we made it through. There are a few things we did right. First, we developed good coping skills such as: positive attitude, laughter, open conversation, leaning in to those around you. Second, we took full advantage of the services offered in our community like: home care, seniors’ day programs, the Alzheimer Society and our physician.
Now, when I talk about my Mom and my experiences, I try to let family members and caregivers know that they are not alone. My experiences are most likely similar to their experiences. This disease brings with it a lot of challenges. There are a lot of hurdles to jump in order to help our loved ones live their best life."
If you’re thinking of sharing your story of being a caregiver, Darlene shares the following advice: “Don’t be intimidated by the person or the group – focus on the great story you have to tell. I always say it’s not the load that kills you, it’s how you carry it. Talking about how you’ve carried that load is impactful and inspiring."
From left: Darlene and her mother.