My dad has Alzheimer's, but I'm more worried about his caregiver: my mom
People can pull away from caregivers because of the difficulty of facing illness
This first-person essay by Brooke Wozniak, who blogs about her father's experience with young-onset Alzheimer's, is part of CBC's Opinion section.
"Brooke, I have Alzheimer's."
He was looking at me like he expected me to be surprised. I knew I should be, so I tried to fake it. I mean, he was only 58. I agreed he was far too young.
Young-onset Alzheimer's is when someone is diagnosed before the age of 65. With young-onset, caregivers are people who often are taking care of their aging parents and in-laws. Now people like my mom have to add their middle-aged spouse to that.
This disease has such a stigma and robs the identity of the person with Alzheimer's. I get why people stopped calling and visiting; it can be hard to see someone you care about not be themselves anymore.
Except they stopped calling and visiting my mom, too.
He's in his own world, and it seems a peaceful one. The world that's hardest is my mom's: that of the caregiver.- Brooke Wozniak
It was hard watching my dad deteriorate. He was more fun than I can describe. He was charismatic, outgoing and was always on the go. He played junior hockey in the 1970s for the Humboldt Broncos and the Saskatoon Blades, and coached for years after that. He had friends everywhere.
But after his diagnosis in 2013, he became a shell of who he once was.
My aunt said something that really resonated with me: "He doesn't know what he doesn't know."
It's so true. He's in his own world, and it seems a peaceful one.
The world that's hardest is my mom's: that of the caregiver.
A superhero without a cape
Up until my dad went into long-term care in November 2020, my mom was with my dad every day, all day, through all of this. She had to watch her husband of almost 42 years go from the partner role to that of a child. She cut his food, cleaned his clothes, helped him dress and made his bed.
When we were in lockdown, she invented games for him to try to pass the time. She took a bunch of black and white hockey pictures of NHL players from the 1960s and '70s and printed them out onto large sheets of paper. She even had them laminated, then asked him who they were. He got bonus points if he knew what team they played for.
She always did stuff like that with us as kids; now she does the same with my dad.
She was the one constant in his life. There was little conversation from him, but he was always following her around from room to room. I could see the exhaustion wearing on her, but she never complained.
The truth is I worry about her much more than I worry about my dad. When is the last time she has connected with their friends? So many of them drifted away once the disease started to become obvious.
It takes a village
People ask me all the time what they can do for someone going through this. It's simple: reach out. Let the caregiver know you're thinking of them. If you already do, do it more. The days are so long that it can feel like years between calls and check-ins.
Remember this: you're not just checking in on the person who is ill.- Brooke Wozniak
There are neighbours who would stop by to see if dad wanted a visit, and to give my mom a chance to rest or to run out for errands. There are those friends and family who call in and check on her on a weekly or even daily basis. Her sisters take her for girls weekends to unwind and recharge. One friend from long ago has reconnected because he knows how hard the caregiver role is. It's too bad it takes this experience to truly understand how much a caregiver needs connection.
Now that the pandemic is added to the mix, just imagine how separated caregivers feel from the world. Letting a caregiver know you're thinking of them can be that simple moment they need to make the day a little easier.
Remember this: you're not just checking in on the person who is ill; your connecting with them is more for the caregiver than for your sick friend.
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