In 2020 my wife Carol was diagnosed with frontotemporal Alzheimer’s, a terrible disease that causes the brain to change physically and slowly die. The slow process brings on negative, irreversible symptoms that cause personality changes, loss of executive thinking, the ability to converse, mobility issues, loss of body functions, and a host of other undesirable changes. Watching your loved one gradually deteriorate and lose the wonderful qualities that made them so special is often referred to as the Long Goodbye.
There is an abundance of good information about this disease and other forms of dementia from good sources on the internet, but the in-person support is only available in large urban areas. Health-care caregivers from Vancouver Coastal Health travel from Pemberton and Squamish to service Whistler, but the resources and availability is very limited. The Canadian Alzheimer’s Society predicts one in five seniors will be affected by some type of dementia within the next 15 years.
Two and a half years ago a pilot program called Making Connections spearheaded by Charalyn Kriz from the Whistler Mature Action Community became available. There was an overwhelming demand for registration for this program that provides a very qualified fun fitness instructor, an incredible music therapist, and wonderful, caring volunteers who organize game sessions and serve up hearty lunches. The program has brought together caregivers and their loved ones that would be going through this awful journey on their own. An unexpected consequence of attending is the connections that have grown between the participants—we support and help each other, which assists in filling the void of social isolation that comes with the loss of normal lifestyle. We are truly a supportive family.
The volunteers have gained experience in supporting the participants and have taken on some of the role of additional hands-on support for the participants, freeing up the partners to enjoy the activity. Several volunteers make regular wellness checks with me and are regular visitors to our house. They take Carol on short adventures, often ending at the Alpine Cafe where she has become a celebrity. This is a wonderful break for me. The program is funded through federal grants from the New Horizons program and several private donations from the community. At our last Christmas session we had 24 participants including volunteers. We currently rent private space for our venue, but that is not long-term. Our requests to the Resort Municipality of Whistler elected officials to assist in helping us find a more permanent venue are being dismissed.
A similar weekly program in Pemberton called Movement Matters is run by the paid Pemberton recreation staff. Their venue is a permanent dedicated senior/youth centre. Funding is from the Village of Pemberton, with some assistance from private donations. This program is also wonderful, and we are also regulars there. They welcome our Whistler clients. Both programs have initially received help from the Better at Home Society.
Over the past two and a half years, this program, the volunteers and the participants have been my main source of a social life and contact. This is a wonderful, needed program and it would be a crime to see it discontinued due to the loss of a venue and support.
I am so thankful for their wonderful care and support that has allowed me to keep what little sanity I have. Unfortunately, due to further progression of the disease, it is no longer feasible for us to continue.
Thanking everyone for all your wonderful support—you make a difference!
