living with dementia: what it feels like

refusing to let a devastating diagnosis hold him back, bob murray volunteers on patient advisory committees, does radio interviews and writes a blog.

by emma jones

apr 19 2022

5 minute read

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what it feels like: living with dementia

in canada, just over seven per cent of the population 65 and older is living with dementia. getty

dementia is a category of progressive illnesses that affect the brain functioning of adults, including alzheimer’s disease , frontal-temporal dementia and lewy body disease . there is no known cause for any of these conditions, however they have been generally linked to the development of abnormal proteins in the brain, reduced blood flow to the brain and/or nerve damage.

in canada, just over seven per cent of the population 65 and older is living with dementia , leading experts to warn that in the next 20 years, the number of canadians diagnosed each year will double as the population continues to age. however, there has been a small decrease in the number of canadians diagnosed with dementia each year, indicating that some interventions may be working.

bob murray, 82, sat down with healthing to talk about his dementia diagnosis, the need to learn about family medical history and his plans to make the most of the future.

what led to your dementia diagnosis?

after i lost my wife to cancer, i saw my doctor with a list of things to ask her. one of those things was the fact that i had noticed that i had lost some of my memory. she gave me a white sheet of paper and asked me to draw a circle. in that circle, i was supposed to put numbers one through 12 [like a clock] and put the time of 10 to two on with the two hands. i did a reasonably good job, but not good enough. and she said, ‘i’m going to send you for a brain spect scan,’ and that’s how i got started. [a brain spect (single photon emission computed tomography) scan is used to diagnose alzheimer’s and other neuro-degenerative diseases like, stroke, seizure, and to identify memory loss.]

is that when you found out you had dementia?

they said that i had abnormal perfusion of the right basal ganglia cells [the basal ganglia are responsible for motor function, effecting speech, movement and posture] and the right temporal lobe. they said i could possibly have frontal temporal dementia.

so my family doctor gave me a referral to the toronto memory program and i met with a neurologist. dementia isn’t a specific disease — there are just a whole bunch of symptoms and they’re put under the same umbrella. dementia is related to alzheimer’s and people often confuse them. the neurologist didn’t use any of these words, but i had read how dementia had no cure. i figured i had about six to nine years and that i should get my affairs in order.

what went through your mind?

well, my question to the neurologist was, ‘what do i do now?’ she asked me if i was still driving, and then told me to reduce my time driving to an hour at most at a time [and to do a driving test.] i did the test and passed it with no problem at all.

then she told my wife (bob remarried) that i will be [having] some cognitive issues, but she didn’t use the word cognitive — she said ‘memory.’ memory goes into the hippocampus and then it is distributed around the brain. so when you’re asked to recall something, your brain has to scramble and find out where the hippocampus put all this memory stuff. and usually by the time you find it, the person who asked you the question has gone on to something else. so you’re attributing this to the memory, but what i lost was focus. i remember things that i wanted to remember.

other than driving, how has dementia changed your life?

my wife now does all the driving. i got lost a few times, so it’s easier for [her] to drive.

the big change i made was moving. i used to live in alliston, but it became very complicated for me. [it] was busy, busy, busy, busy and i wasn’t able to handle it. so my wife and i searched prince edward county, all the way up to halliburton, and down to london for what i call senior lifestyle communities. and that’s where we are right now. and i’m with my peer group and [there’s] much more recognition of my issues because they all have their own issues.

my diagnosis meant that i began volunteering with the alzheimer’s society. i also started writing columns, which went into the newsletter — i’ve written 56 of them. i write for a local newspaper too — i tell my story. i just write the way i talk and people seem to like it. i write a blog called my voyage with dementia , and i am working on a book — i can’t find anyone who will support it, so i’m doing it myself. it’s going to cost me 10,000 bucks. i want to give it to doctors for their patients.

i’m also on what they call patient advisory committees, i’ve been interviewed by cbc, on the nightly news, and i get calls from people like [healthing] because i’m an advocate for people with dementia.

what advice can you share with someone who’s received a dementia diagnosis?

i would say find out about the health of your parent and grandparents. are there things that they have or had that could have been passed on to you? and then tell your doctor. if you have symptoms that are similar, ask to be tested.

also, know that a healthy heart is a healthy brain.

is there a treatment for dementia?

i’ve tried everything that health canada has approved, but it has not had any effect. i’ve also tried cannabis, but there’s been no effect. the biggest problem is anxiety, stress, and lack of sleep. i’ve had to learn new habits. i’m no longer a multi-tasker. i have to do one thing at a time.

what are your plans for the future?

i play golf four times a week, i want to continue with that. i have a landscaped front yard, and river stones and vegetables. i want to be a super-ager — growing my gardens, enjoying my golf, my neighbours, my wife — i want to enjoy what i have.

i’m going on the rocky mountaineer rail tour next year. it’s a very luxurious train trip through the rockies from calgary to vancouver. it’s really special. you stop in a different hotel every night, it’s about five nights, and you’re in a domed car.

it’s so important to work with what you’ve got. i’ll tell you a story quickly that [i read in] a magazine. there was this farmer who had 100 acres, then he reduced it to 50 acres, then 20, then 10, and finally he just had a window box in his room. he got the same pleasure out of that as he did the 100 acres. i want to be able to get the same pleasure out of my life.

follow bob murray’s blog my voyage with dementia.

readers interested in learning more about dementia can visit the centre for addiction and mental health, government of canada’s website and the alzheimer society.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn.

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living with dementia: what it feels like