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What it’s like to lose a father to Alzheimer’s

Every Father’s Day I am filled with gratitude – for my three children, who made me a father and who have put up with me all these years. And now, as adults, we all still seem to like each other somehow. And that’s despite what my wife, Carol, and I learned early on. That parenthood is a wild experiment full of failure and confusion, but also arguments and negotiations and impasses – about driving and dating and sex and drinking and weed and college and jobs and a thousand other worries and challenges. But luckily, all of that is more than offset by the raw joy, learning experience, and radical love that parenthood and family have to offer.

Every Father’s Day I am also filled with gratitude for my own father. He was a smart, honest and compassionate man and a preacher in a small town in Iowa. He died 11 years ago of Alzheimer’s disease. Considering that June is Alzheimer’s and Brain Awareness MonthAs I think of my father, I also think of all the other families now dealing with this debilitating disease. Despite ongoing research, there is no cure the statistics continue to deteriorate. Currently, approximately 1 in 9 people aged 65 and older have Alzheimer’s disease. And the number of deaths from the disease doubled between 2000 and 2021.

I think Alzheimer’s disease is so feared because losing your mind and memory seems to be tantamount to losing your life, or the parts of life that matter most: the ability to talk and argue and love and dream and remember who you are. It is a time when living in the now is not a virtue but a disadvantage. People with Alzheimer’s disease are forever trapped in the present moment, not knowing how they got there or where they are going. It is heartbreaking to watch a loved one go through this process.

That’s how I remember my father.

On the day he died, he looked as run-down and dehydrated as the small Nebraska farm where he grew up during the Depression. Just as the dust storms of his youth had stolen the rich topsoil from their farm, the silent storm of Alzheimer’s disease had swept his best thoughts and dreams from the landscape of memory. Nothing could grow or take root in the dryness of his mind.

A week earlier, my two older brothers, Paul and Rob, called and asked me to come to St. Paul, Minnesota, where they live and where Dad was in a care facility. It was time for hospice. Paul and Rob had spent two years dealing with the daily grind of Dad’s mental decline: the maze of doctors, carers and medications and how to pay for it all. When Dad escaped from his room a few months earlier and locked himself in his underwear in a snowy parking lot on a freezing January night, they took him to a memory ward.

That was a sad place. All windows were locked and alarmed, and the entrance door required a code. Without the rudder of memory, my father and the nine residents of his unit all seemed adrift in a small boat on a wild, endless sea – but not concerned about finding their way back to shore. Every time I visited and had dinner with them, I wondered what I looked like to them: a dim light in the distance that they could row to for a few seconds? And I wondered what I would do if it were me and if I could still decide. That is, if I couldn’t recognize my family or friends, or remember what and who I loved, would I want to live?

That’s a question many people who lose a parent, sibling or friend to Alzheimer’s disease may wonder. It’s one that lingers somewhere in the back of my mind as I approach sixty, along with a few others: Where did I put my glasses, my phone, or my car keys? What day is it? What is that person’s name? What time was that appointment? And so forth. Who doesn’t start to wonder a little about their memory as they get older and their brains slowly decline?

The difficult thing about Alzheimer’s disease, Parkinson’s disease and other neurological diseases is that your father or mother becomes like a child again and you have to take care of him or her. While this is nothing new – children often take care of their parents when they are older – the challenge of Alzheimer’s is that a person can live 10 or 15 years after diagnosis. And so finding and paying for good care and balancing/managing your own life can be a real challenge.

Needless to say, caring for someone with Alzheimer’s disease requires a lot of compassion – a word that means “to suffer with.” Unlike caring for children, who are full of potential and represent the future, Alzheimer’s patients typically do not offer their caregivers much hope or joy. There are different resources which are useful, but it is difficult work.

That’s why this month, when I think of my father, I also think of all the caretakers who suffer – who feed, clean and listen faithfully to their parents, siblings or friends in an elderly care center or memory unit. Thank you for your daily efforts to shine through the dark clouds of confusion and loss as they continue to gather in the distance.

Tom Montgomery Fate is professor emeritus at the College of DuPage in Glen Ellyn. His most recent book is “The long way home”, a collection of personal essays.

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