May latest article from Alive Magazine talks about using September - the notorious back-to-school month - as the real springboard from which to launch changes and/or improvements to your own routine. New Year's resolutions are fine, but motivating yourself to make positive changes is challenging enough without kickstarting them during the dark, cold winter months.
From the July edition of Alive Magazine, this article - entitled "As You Go Along" - asks : When you are a parent of a child, and also a child of a parent afflicted with dementia, how do you plan for what’s coming? And then asserts that sometimes, you just don't.
I'd like to thank two people who were not only instrumental in contributing to this article, but also as much in guiding me through a challenging year: Sabrina Dion and Caroline Meynard. These two women, thankfully, have as much experience with dementia as they do patience.
Thank you for reading:
Throughout the various stages of parenthood, people have always referred to “the woods.” As infants, once our children slept through the night we were (supposedly) “out of the woods.” However, the forest was far more expansive than those early parenting metaphors suggested. Toilet training? Woods. Feeding themselves? Woods. Walking? Woods.Tropical, temperate, boreal. Woods, woods, woods.
Recently, when my eldest child turned 13 years-old, I benefited from the wisdom of friends whose sons and daughters have passed through the fires of adolescence. I realized I was not out of any woods. I am now, rather, strolling the pastures between them. Drivers licenses and drinking ages were crouched like bandits in the forest beyond the next bluff.
But, as with many of my sandwich generation peers, the next thicket bloomed even sooner than predicted; my mother was diagnosed with Alzheimer’s disease and Lewy Body dementia. I have reflected on the trials, fears, and compromises necessary to see to it that she is being well cared for, as well as to accept what I cannot change. Through that article, and conversations since, I realized what a comfort it was for me to talk with not only other children of parents afflicted with dementia willing to share their struggle, but also to have access to the reassurance and expertise of those who support and treat victims of cognitive illnesses.
Though these diseases can manifest themselves through myriads of different symptoms, the caregivers’ challenges (and stresses, and fears) are remarkably similar. While families are often thrown into a state of panic by the realization of what steps must be taken to protect their parent, medical staff who specialize in caring for patients and their families rarely encounter a scenario they are not familiar with.
Sabrina Dion is a registered nurse at a private residence which specializes in caring for men and women at various stages of loss of autonomy.
She sympathises with those living with the emotional weight of moving a parent into a home for the first time. While altruism is an able motivator, the burden can detract from - and begin to deteriorate - the caregiver’s relationship with their spouse, their children, and their career. Dion says this can have devastating emotional costs:
Families are very upset, families feel a lot of guilt, families are going through a crisis.
Parents are no longer in their home, their safety’s at risk. So it’s a rush to get them into a safe environment.
It’s a struggle between, “How I am going to handle my home life?” and, “How am I going to make sure my mom or my dad, or either, or both is ok?”
And then I remind them, “What you’re doing is looking out for your mother’s or father’s best interests. You know they’re in an unsafe environment, and you know you can give them a better quality of life given you can’t change the outcome of dementia or Alzheimer’s.”
This is where it becomes a mish-mash, this is where it becomes really challenging. You have to have a career, you have to get to work, you have to take care of your children. The you have to make sure that your parents - if they’re compromised with the loss of autonomy or of cognitive deficits - are taken care of as well. It’s a lot. Caregiver burnout, that’s the big thing that I look for...that’s my red flag.
Because you taking mom or dad to your home, and not being able to be there and not being able to understand, and burning out, is not going to help them in the long run.
Caroline Ménard is a psychologist, and coordinator of the Behavioural and Psychological Symptoms of Dementia team at the University of Montreal Geriatric Institute. She says it is often easiest to think of this time as a time to mourn*:
It is no longer the mother or the person you knew. It is like mourning for the person you used to know; mourning for them before their passing. It is mourning for what was their daily life, which has now become the loss of a driver’s license or the person leaving their apartment. There is also the loss of the person they used to be; they may have been very reserved and now they act out. Those changes can be very, very emotionally difficult.
Once the elderly parent is removed from the dangers of autonomy, the child and lifelong friends of the patient become spectators of the slow, long-term ravages of cognitive decline. The patient’s personality changes, their physical abilities diminish, and their memory becomes confused and diffused. Dion spoke to me about those feelings of helplessness:
You can visit your parent, and the parent doesn’t recognize you. That’s a really difficult one for children to deal with. That’s when a lot of the children come to my office and it’s like, “Wow, I can’t believe that just happened, that person is my mother.”
So it’s to remind them that if they call you your brother or your husband or tell you, “I know you but I don’t know your name,” just keep going with the conversation. Because there is no point in trying to pull things out of a person. It will get them frustrated, it will get them upset, it will get you upset.
Ménard points out that while specific memories may no longer be viable, emotional memories may last until the very end, and should not be ignored:
The person may not recognize a person as being their son or daughter, but they will still feel happiness when they see that person because of the history they shared.
I have seen people nearly unresponsive in their beds, but upon hearing their spouse’s voice, their eyes open and they smile. That is their affective memory.
Victims of Alzheimer’s may also become physically abusive to those they formerly cared for. This impulsive behaviour is the disease, not its host. It is an uncontrollable impulsive reaction. Although it may seem a very personal, hurtful act, the recipient must remind themselves they have done nothing wrong. They are caring for someone losing their filter.
Ménard iterates that each person digests the realities of Alzheimer’s in their own way. Some may react with urgency, while other need time, and distance. Reactions of families and friends can be as varied as the effects of the disease itself:
For some children, accepting what’s coming creates too much anxiety, it’s too difficult. Sometimes it’s better to just deal with this moment. But, eventually, you have to express your emotions. Support groups can be extremely helpful navigating a person through the changes which lie ahead.
She also stresses the importance of asking for help before burnout takes a physical and emotional toll:
There are many more resources than there used to be. There’s the Alzheimer's Society of Canada, for instance. It is important for the child to understand the illness. Since you yourself are a child, and you may also have young children in your life, you have to be able to express what you’re living through, and the emotions which are being triggered; that can be very helpful. You have to ask for help.
Guilt. That emotion that often forbids one from finding their way out of the woods. It is all-powerful, and ironically had its profile created throughout our upbringing with our parents. And no one can trigger a more pointed guilt reflex in a child than their mother or father. There is often so much unresolved, so much unspoken. And, now, as a result of cognitive decline, that relationship may be beyond redemption.
Dion reassures families that that time has passed, and children can feel pride in refocusing their energies:
I think a good reminder and takeaway is for children who have parents who have Alzheimer's or any type of vascular dementia or Lewy Body, is to remember that, whatever choice you’re making, if it’s for your parent’s best interests, it’s always the right decision. And you have to understand that you have permission to live your life and raise your own children. It’s the natural cycle of life.
Being lost in the woods is also part of life's natural cycle. With dementia, that journey can take years to complete. Perhaps the challenge is not seeking a path out of the forest, but to try to find the right tools for long-term survival, as well as company for the journey ahead.
* Interview with Caroline Ménard conducted in French. I provided the English translation.
Here is a panel discussion on CTV News Channel with Todd van der Heyden, Hadiya Rodrigue, Jason Rockman, and me.
Topic includes:
CTV NEWS CHANNEL CULTURE SHOCK PANEL - MARCH 22ND, 2018
We had a turntable in our basement, though I had no appreciation at the time of how inferior a machine it really was. It spun primarily Dr. Seuss's “Fox in Sox,” and its ‘B’ side, “Green Eggs and Ham.” Another favorite of mine was an LP of “Sneetches and Other Stories,” also by Seuss. The last track on the album - its “A Day In The Life” - told the story of Seuss's gender non-specific protagonist being stalked by a pair of pale green pants with nobody inside them.
In 1979, I was not yet 8-years-old; the thought of being pursued by abandoned trousers was darn spooky, thank you.
My records were decorated with chalk doodles and tattooed with permanent needle drags. But, who cared? The machine, and the stories it told, were timeless companions...until, that summer, I was introduced to what true magic could be conjured by a vinyl record.
My family’s semi-detached cottage was in semi-industrial suburb on the island of Montreal. Several times each year, the six of us would pack ourselves - and our patience - into a midsize sedan and drive five or six hours west to visit my first-cousins in Toronto. The three Ontario brothers were, on average, ten years older than I. So, not only was I careful to pack a healthy imagination for a long drive sandwiched between by siblings in the back seat, I was also smuggling a healthy portion of hero worship for the visit that awaited me.
As with most homes that are not your own, my perception of the house in the borough of East York was that it was filled with cool stuff. There was the secret kitchen drawer filled with Twizzlers and marshmallows. There was an upright piano guarding a basement room whose floor was coated with orange shag carpeting. As if waiting for a scene from Studio 54, the matting continued up the side of a bar, whose melamine counter was illuminated with red and green pot lights which resembled oven burners inverted into the ceiling.
Trippy. Even for an 8-year-old.
Each of my cousins’ bedrooms had as its centerpiece a high-end hi-fi system, with hearty speakers of dark wood and black mesh hiding behind them whatever magic made the music.
The stereo offered only two sources of entertainment: an AM/FM radio...and “phono,” which channeled the turntable.
While I sat cross-legged on his bedroom floor (my 1979 joints were more forgiving than they have been in the 21st century), my cousin selected an album from the horizontal stack in his closet and said, “You should listen to this.”
He handed me a pair of headphones which were so large that, once they were clamped over your ears, one could not help but compare oneself to Princess Leia, whose brunette Kaiser rolls had become legendary two years earlier.
The ‘phones were umbilically connected to the amplifier by the granddaddy of electrical cords - a black, coiled cable long enough to remain attached to your headphones and still offer a freedom of movement which would compete with the cordless technology a decade into the future (until it became a knotted mess as a result of too much pacing and multi-tasking).
The headphone jack sparked and hummed as I connected it to its female counterpart - as though whatever was bottled inside the machine sensed its imminent release.
Moments later, as the needle skated along the first inches of vinyl groove, I was introduced to “Sgt. Pepper’s Lonely Hearts Club Band.”
What a funny name, I thought.
Then, immersed in my first stereo recording experience, I was surrounded by an orchestra tuning up, followed by a rock band’s thirty-nine minute story which began “...20 Years Ago Today.”
Thirty-nine years later, my wife and I smuggled our thirteen-year-old son’s Christmas present out from the corner of our bedroom - an Audio-Technica turntable.
Everything old is new again.
In our basement, leaning up against books of decades ago by Ayn Rand and Stephen King (the former my wife’s, the latter mine), stood a dusty collection of mistreated vinyl: Faithful Seuss, Hitchcock stories, and Batman adventures. All of which were fettered with more scratches and speed-bump warps than any needle could handle.
The old gang was no match for a new phonograph.
This is why my son’s gift also included a certain album whose cover alone could captivate one for hours.
“Listen to this.”
Fate has its own sense of timing which often dabbles in the extremes of “perfect” and “horrible.” Ron Howard’s “Eight Days a Week,” was released in 2016. The following year, the world would celebrate the 50th anniversary of the Fab Four’s seminal album. As a companion to the musical landmark, PBS broadcasted “Sgt. Pepper’s Musical Revolution.”
The documentary dissected the LP: how it was recorded, why is was recorded, what techniques were used, and how innovated the band - and especially George Martin - had to be to glean the sound they wanted from 1967 technology.
Perfect. Fate provided my eldest with a Sgt. Pepper master class during the run-up to Christmas.
While my son’s gift was uncovering the revolutionary magic of analog needles and grooves, my gift was reliving my adolescence through the hums of base notes and the vibrations of rock-band-meets-orchestra working its way through my bedroom floor.
In his room, just below mine and my wife’s, the record was spun over and over, with brief pauses only to rotate from side A and back again.
Nostalgia is a creeping companion. It appears to some as re-creations of memories, to others as the mechanical wonder of a needle racing round and round through a vinyl canal, digging from them the ghosts of an English quartet.
I think this is where the past is a wink ahead of the future.
The past was never instantaneous. Anticipation and patience were things to be celebrated: the moments during which the record spun, but the needle still searched for a composition’s first notes; the slow-motion retreat of a tone arm back to its seated position awaiting whatever jewel may be encrusted in the B side of a classic work.
Digital is instant. Digital is right now. To lag is to fail; to wait is to waste. There is no anticipation in buffering, only aggravation.
A vinyl record is, like a child, is something which must be cared for; something which takes time to play itself through; something to discover.
The only thing which gives more pleasure than marvelling in discovery is being awed by rediscovery.
I will never relive my first encounter with Green Eggs, or Hitchcock, or the Batman. But I can, thankfully, revel in my reintroduction to Lovely Rita (where would I be without her?). All thanks to a little help from a revolving platform, a curious teenager, and that infamous band leader, Sergeant Pepper.
