Strap yourself in and get ready for the ride of your life.
Remember the elementary school teachers who wrote in report cards about your talking in class? Well, guess what, in a few years you will hear people telling you, “Don’t stop talking!” Imagine that!
Yes, that day in February 2007, when you had that conversation with the doctor about your troubling memory, was difficult. But don’t go home and shut yourself off. Let people know what you are dealing with and that you intend to keep going. That small action will be a positive step forward and, trust me, it will make you feel good.
There will be adjustments to your activities of daily living, there’s no doubt, but use your creativity to make things work more easily for you. Along the way you will be surprised at how creative you really are!
Purpose. You need that. You need a reason to get out of bed in the morning.
You will end up winding down your company, but that isn’t and doesn’t have to be the end for you. You are still mobile and capable. You and Alice saw Alzheimer’s disease through Mom’s experience with it and her transition from the condominium to independent living and then to long-term care. Your background is in marketing, advocacy and communications. Put all that together and you can do something to make the world a better place for people living with dementia and our caregivers and spouses, like Alice.
Stigma, you know the word. You witnessed Mom’s experiences with it throughout her entire journey, so be prepared to raise your voice. I know you will find opportunities to show that people living with the disease can be a part of the community and meaningfully contribute. Use your story and Mom’s story but broaden the message. Stigma is everywhere, communities large and small. As we once heard, yes you can!
If you think your education ended when you were a young man, you were wrong. Your education will not be in a classroom with a chalkboard. It will be adapting to your life as a person living with Alzheimer's disease. Sure, there will be moments when you feel like you’re not only in over your head, but actually drowning, but you will have many other moments of reflection that will show you in technicolour what you learned and how you contributed. I know you will change hearts and minds!
As amazing as it sounds, you will learn about research and its many components. You will also learn there is more than just biomedical research, that there is quality-of-life research. I should tell you to be prepared for what comes next but that won’t help. You’ll just have to dive in and learn. I can assure you these will be exciting years, overwhelming and intense. The one word to always remember is “enjoy.” Enjoy the experiences and opportunities that unfold for you.
Know too that you will influence researchers and research projects when you tap into your skill set from when you were employed full-time and as a contractor. There is valuable knowledge that can be transferred from business to projects.
Remember when you and Alice first had the feeling Mom was on her own dementia journey and you went to the local Alzheimer Society of B.C. resource centre for brochures to help understand what was going on? You will be pleased to know their services for people living with dementia, caregivers and others have increased around the province.
Your relationship with the Society won’t remain local as you will also work closely with the national Society. Through it all you will meet some amazing people and I encourage you to, once again, listen and learn but also share, as that insight will be extremely valuable. Be encouraging while inserting the voice of a person living with dementia in many discussions.
You have no idea what is ahead of you and maybe that’s a good thing.
Who would have thought you’d be an author, or connected with a group of people focused on technology? Crazy, eh? You have come a long way from your first Commodore computer and now to work on projects involving robots, all of which shows what can happen when you grab hold of opportunities.
I am writing this as I approach the 15th anniversary of being diagnosed with dementia. During these years, I have come to realize that the prevailing thought about people living with dementia from many in the community is that a person goes from diagnosis right into long-term care. Immediately. It is changing that perception that that has kept me active and has given me a purpose. As you will say many times, you advocate to educate.
So, Jim, as I said at the start, strap yourself in and get ready for the ride of your life. Enjoy every minute and every experience.
Read Jim’s monthly updates on living with dementia in the community during COVID-19 at alzbc.org/jimsstory