Duncan, the youngest of my siblings lives in Calgary with his wife Genevieve and their two 20-something children, Reed and Maxime. In June of 2017, shortly after my husband and I moved to Victoria, we received a call from Duncan with the news that he had received a diagnosis of Early-Onset Alzheimer’s (EOA). Our response, as one would expect, was that of shock, disbelief, anger and overwhelming sadness. How could this be happening to the happiest and healthiest guy in the room? As it turned out, Duncan, in his mid-50‘s, fell into that unlucky group of individuals with no clear cause or genetic pre-disposition for EOA.
While all families have their ups and downs, I feel so blessed to have wonderful relationships with my mom, my three brothers and their families, and of course my sweet husband. That said, I will admit that there’s a special place in my heart for my younger brother Duncan. Close in age, we were always paired up on family trips and happily kept tabs on each other growing up. Eventually we set off on separate paths and settled down with our own families in different cities. Despite the distance, we have always remained close sharing important milestones in our respective lives, spending holiday times together with our families, and always talking regularly on the phone. When Duncan delivered the life changing news to me about his EOA, the future suddenly looked a whole lot different and I wondered what can a loving sister do when she lives far away but desperately wants to help?
Lucky for Duncan, he married a wonderful woman and together they have raised two great kids. Now in the third year since receiving the EOA diagnosis, Duncan is no longer working and has had to adapt to days without as much structure. Genevieve as primary caregiver is doing her best to help them both find balance and make the most of each and everyday. While I’m not there to see it, I know she is handling the challenges and changes that come with EOS with exceptional care, devotion and patience. At a distance, I’m in regular telephone contact with Duncan and our conversations, often filled with humour and irreverence, bring a sense of calm and normalcy to the situation. While we don’t dwell on it, neither do we ignore the fact that time is marching on. Most, but not all, of our conversations will include an update on how he is feeling, whether there are changes, and how Genevieve and the kids are doing. While it’s not an easy exchange, I think there’s some relief for us both in being able to address the reality of the situation and express feelings without wallowing in sadness.
Providing support from a distance also includes care for the caregiver. Regular check-ins with my sister-in-law make her realize (I hope) that she is not alone. It’s an opportunity for Genevieve to share her observations and the daily challenges with someone who she knows cares deeply about Duncan. Developing closer connections with my niece and nephew is a work-in-progress because I know that they will need support and care over and above the incredible love they are getting on the home front.
For my mom, my other brothers, and the huge circle of extended family and friends that have known Duncan, Genevieve, Reed and Maxime for many years, we know that time is of the essence and our job is to make the most of it! Staying connected, being positive, and in the face of the least funny thing that could ever happen to anyone, maintaining a sense of humour actually does help.
Informing oneself about Alzheimer’s disease, its manifestations and stages is essential. For me, connecting with the Voices in Motion choir (ViM) at around the same time I received the news of Duncan’s EOA diagnosis was a welcome opportunity for me to learn more about the disease directly from those with dementia, their caregivers, the UVIC researchers, and a handful of caring students and community members. It has been an opportunity to experience the incredible impact that music and singing has on our members, our audiences and community supporters. For me as a ViM chorister, violinist, volunteer and board member, the choir is like a second family and one that I know will provide the support and solace I may need in the not-too-distant future as the impact of Alzheimer’s on my brother Duncan and his family deepens.
The theme for our Spring 2020 ViM concerts is “People Who Need People” and I am so grateful for the people in my life – my family, my friends, all those that I have met through my musical experiences with ViM, and of course my little brother Duncan.