Neil’s Story

Categories: Living with Dementia|By |Published On: |

Neil Godfrey at his home art studio near Calgary. Photo by Jared Sych.

Neil Godfrey at his home art studio near Calgary. Photo by Jared Sych.

Neil Godfrey is a geoscientist by profession, outdoorsman by hobby and, as he discovered in his early 40s, an oil and watercolour painter by passion. Early in his retirement, at the age of 60, Godfrey began to notice troubling symptoms, including struggling to file his taxes and read his watch. Eventually, Godfrey was diagnosed with posterior cortical atrophy — a rare form of Alzheimer’s disease that affects, among other things, spatial perception and calculation. Now 63, Godfrey is still a man of many interests, especially when it comes to connecting with his wife, Joanne, three children and six grandchildren. As he continues to adjust to his new normal, Godfrey prioritizes activities and people that bring him joy, value and purpose. To challenge stigma and raise awareness, Godfrey regularly shares his experience living with dementia, including with students at the University of Calgary, local churches, seniors’ groups and, now, Dementia Connections magazine.

I [was] a double ‘E’ extrovert, and now [since the diagnosis], I’m probably a small ‘e’ extrovert. Now, what brings me joy is relationships, [including] my wife, my family, my friends, my grandkids and grand-dog. And sushi dates, skiing, hiking, camping, painting and the mountains. Oh, and a good night’s sleep — my neurologist told me that a night of good, deep sleep is really good for people with dementia. 

“Life is good. I stay very active, but I have simplified my life. I keep a very detailed agenda and focus on familiar things.

“I’ve never had [anxiety before] in my life, so, in the last two years, that’s new for me. I manage my anxiety by managing stress, paying attention to what causes me stress and avoiding it. I just make [social] decisions and say ‘yes’ or ‘no,’ and I’m not afraid to do that, whereas before, I would just do everything. 

“[The advice I would give to someone with dementia] is to embrace it, accept it and simplify your life. Being socially active is really important. Buddies call me and say, ‘Let’s go for sushi, let’s go skiing,’ or I’ll pursue people for coffee, and I love that. Do not isolate. Now, I think it’s an era where you can say, ‘I’ve got Alzheimer’s, and it’s okay.’

“[I have learned through all this] to be kind to your care partners, and I say care partners because there’s more than just my wife caring for me; there are friends and whomever. 

“I edit my life by focusing on what I can do, not what I can’t do. What gives me hope every day is my strong Christian faith in Jesus Christ. He is my anchor and the peace in my storm. 

“[Dementia] is an important topic. I’ve done speaking tours and am still doing them. I do it because it’s so important to this generation to have an awareness of dementia. I self-diagnosed, and I encourage people to go to their doctors [and advocate for themselves]. If you have [a] dementia [diagnosis], you should educate yourself. [After a diagnosis], you should still be public, and you should still enjoy your life.” [ ]

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