My 94 year old Dad was in the hospital for a low heartbeat that ended up being only a half-beat. It was causing him to lose blood flow and pass out. It was the falls that were doing the damage. People on blood thinners are extremely hard to bandage, particularly when they have almost no sense of touch, nor the awareness to fully cooperate.
Many people misunderstand dementia. For many it’s a disease that takes a very long time to take hold. Its progression can most easily be understood as a regression back towards babyhood, with the final stages being that helpless being everyone imagines. But the progression still has the potential for joy and full experiences.
Due to it’s slow progression in many, unless you knew my Dad well and saw him often, most people wouldn’t even have noticed the first decade of it. And even after that, the progression was still slow. Being a person obsessed with studying the brain, I realized that I needed some objective way of determining where he was at in his decline.
I am very science-minded in how I approach life, I use a lot of Socratic Method and some firm principles to make most of my decisions, so I’m a bit like Spock with a big heart, (except when I’m hangry, then I’m a Klingon). I looked at Dad’s life for instances where his mind had to do various levels of complex tasks and I realized that two of his favourite things were the perfect devices for assessing his capabilities.
Dad loves puzzles (those ones you’re supposed to take forever to take apart and yet always does them quickly), and he loves playing cards. I have a brain that naturally notices detailed patterns in behaviour, and so I can watch him and see what parts of his brain are active and which he’s lost. This is a good combo. His diseases ebbs and flows, and it goes in phases. It really is quite interesting.
If you want a metaphor for the common effect, dementia for many is a condition that you can think of as lowering the power supply to your brain. This means that thinking about more than one aspect of an idea at once (like comparing two potential hands in cards), gets hard without enough electricity to load up a new potential hand while still holding the first possibility in our memory.
It’s like he’s picking fruit to build the two potential hands of cards, but he can never hold enough fruit for two full hands. But the amazing thing about the brain is, it’s clever. Life always tries to find a way. Just because it doesn’t have the capacity to load all of those possible neural links at once doesn’t mean the mind doesn’t know that the info is in there.
When this happens, totally by nature you’ll see Dad coursing through his thoughts one at a time. It’s like walking every line on a spider web rather than grabbing the whole web at once. You can literally see his eyes following a chain of thoughts.
For those of us who know him well and can catch the look in his eye, we can often see him moving through this process when he is. But there are days where you can ask him a question, and think he’s lost it but it’s not important enough to re-ask. Then suddenly, five minutes later, Dad will be done his mapping of the spider web and out of seemingly nowhere he’ll say, “He was from Aberdeen,” in answer to your question in the previous conversation.
Where this can be frustrating for many is when he repeats questions (which is why he really likes parrots). When he’s tired but very fixated on something he can ask the same thing every two minutes for hours, (many caregivers note that fixated behaviour is another common reaction to dementia). While he was in hospital, a visitor seeing another patient asked me how I could stand it –that just hearing the same question five times in eight minutes drove him crazy.
I explained that I used to live in Sydney Australia in an apartment on a very busy road. When I first moved in I could hear every time the light a block and a half away turned green due to the change in the noise. Within a month people would visit and ask if the noise bothered us and my girlfriend and I would ask “What noise?” So, A) we get used to things.
B) is that it’s really quite easy to handle his repetition when we live in the Now because the concept of repetition demands we think both a past and a future into being. When Dad does bother me it’s when I’m living in the past by recalling the last time he asked me. I can’t blame that on him, that’s me. I don’t have to have my brain still talking to me about what happened 3 minutes ago.
When I don’t –when I’m present– I just turn and answer him originally every single time, and it sounds pretty much the same the 80th time as the first. Because I’m not dragging him through the other 79 times before I react. Each time is new, in that moment, for both of us.
We can’t expect to exhibit our best behaviour all of the time, so when I’m tired and hangry I want to be clear that I too can get impatient with Dad. There is no question there are high odds of frustration with dementia. But for the most part it’s rare with him and I because, in the present, there is no history to repeat or deny.
When spending time with Dad, rather than look back and wish I could go forward faster, I just plod along at his slower pace and keep my mind from racing ahead. It’s actually good for me.
Care-giving is an extremely taxing role even if we have a lot of skills around how we use our consciousness. But if we do have those skills, we can make that experience very rewarding, and the cost of the experiences pays off in terms of our own development.
In the state that he is in now, Dad slows everyone down and engenders patience. He has us all reconsidering our actions, and he very naturally brings out the best in others. This makes his current role in life into one much like a Buddha. And in Asia they say it’s lucky to rub the Buddha’s belly. So today when we’re playing cards, I may have the advantage of faster memory, but he can always just rub his own belly.
A serious childhood brain injury lead Scott to spend his entire life meditating on the concepts of thought, consciousness, reality and identity. It made others as strange to him as he was to them. When he realized people were confused by their own over-thinking, Scott began teaching others to understand reality. He is currently CBC Radio Active’s Wellness Columnist, as well as a writer, speaker and mindfulness instructor based in Edmonton, AB where he still finds it strange to write about himself in the third person.