I write this on June 21, 2015. Today is Father’s Day. It is also the day that the Team I created in memory of my mother, Velma ,is taking part in The Longest Day, a fundraiser for the Alzheimer’s Association. It is just after sunrise, and our first teammate has started her journey on this day-long event.
Usually, when I remember my Dad, Russell Wessels, on Father’s Day, I think of the loving, cheerful and wise man who taught me to read , who regularly slipped $20 bills in my hand “for gas” when Mom was not looking, and who was never happier than when he was driving our boat across Eva Lake in Canada on the way to some fishing adventure. He was a WWII veteran who rarely talked about his experience unless directly asked. He was a hard worker and a thrifty man who had a contest with a colleague on who could re-use the same paper lunch bag the longest. He won. He was a leader in his field of sales and a respected educator.
Because of the connection between this day honoring fathers and this day where we are remembering my mother, I need to share a different side of my father. The one that I lost to Alzheimer’s. No, my dad did not have Alzheimer’s. But as a caregiver, the disease took its toll on him.
It was the day after Thanksgiving in 2007. We had just enjoyed a family gathering at my house the day before. My phone rang.
“I need you to take me to the emergency room.”
“Dad, what is going on? It will take me forty minutes to get there. Should you call an ambulance?”
“No, I can wait. Get here as soon as you can.”
(Typical Dad. This is the same dad who, years before, waited for over two hours in the ER after a dog bite, when he had his little finger almost severed off. Because he had wrapped it up, I had no idea how bad it was even though I was right there next to him. Finally my mom called the ER to see how he was doing, and chewed them out for not looking at it. When they took the wrap off, neither the doctors nor I could believe he had sat so patiently for that long. By the way, it was my dog that bit him. That is a different story to tell.)
I rushed over to their house and took him to the emergency room. After the doctors saw him, he ended up with a catheter and a Monday appointment with the urologist, and we had a decision to make.
“Dad, you can’t take care of this on your own this weekend. You need to stay with me.”
“Alright. Well, let’s go get your mother. She can’t be alone that long.”
As I look back, I know now that until that point in time, I was mostly clueless about my mother’s condition. We knew her memory was getting worse. We knew she repeated questions over and over (even she knew this.) I knew that one time, she had accidentally put dish soap in a pot of soup she was making while I was at their house, and she was extremely embarrassed about it but blamed it on being distracted. We had pleasant conversations on the phone at least once a week, since I lived 25 miles away and led a busy life. In reality, her condition was much worse.
My dad knew how bad she was. Because he had been caring for her behind our backs. He knew that he could not leave her for more than a couple hours. He knew that she was no longer able to cook on her own, or remember to take medication, or do the more complicated household tasks, like laundry. He had taken over the cooking and cleaning, the grocery shopping, and the management of Mom.
And he had done this at the cost of his own health. Because his days were filled with caring for her, by himself, he stopped taking time for his own medical care. And what had been a treatable bladder condition had progressed beyond the early stages without proper medical attention.
From the emergency room, we went to their house and collected Mom and a few things for the weekend. They came home with me. And they never left. We began treatment for Dad. At that Monday appointment, the doctor took a series of tests and ultimately recommended surgery. We decided it was best that they stay with me until Dad recovered. After the surgery, and a few weeks of living with Mom, I understood that Dad was too weak to care for her, and they should stay with me awhile longer.
Meanwhile, Mom had no idea how sick Dad was. She simply lacked the ability to remember anything that had happened to him. She spent her days around my house doing “chores,” sweeping, dusting, washing dishes without soap, looking for the broom, sweeping again, rearranging items on my shelves, turning off lights in the house. One afternoon, as Dad was sitting in the recliner recovering, and Mom was “doing dishes” she got particularly upset.
“Russ, get up off your ass and come over and help me. I’ve been doing all the washing, cooking, and cleaning around here and you are just sitting on your ass all day.”
I got upset. “Mom, Dad is sick. He can’t get up!” “Well, I don’t know what is wrong with him, but I need help in the kitchen. There is a lot to do here, this place is a MESS!” (My housekeeping standards never did match up with my mother’s. In her opinion, my place was always a mess.)
It was seven months between the time they came for the weekend, and the day my father died on June 6, 2008. My brother Richard came back from New Mexico to provide care for my parents while I worked at my job. In the months we were together, I was blessed by the extra time I got to spend with my Dad. We would go down to the basement (carefully for Dad) and he would smoke his pipe, I would ride my exercise bicycle, and we would talk about life’s events. Sometimes I would sneak a cigarette with him. There came a day when he no longer wanted to go smoke his pipe. Then there came a day when he started saying things that did not make sense. And then a day where he no longer could get up at all. After 61 years of marriage we got Mom a twin bed to go next to Dad’s hospital bed, because she would not have understood why they were not sleeping together.
In the final weeks, his thoughts were often consumed by the time he spent in a Submarine in World War Two. He was not coherent enough to explain this to us, instead we heard him exclaiming and frantically turning phantom control knobs with his hands. Once, in the middle of the night, when I heard him tossing and turning about some crisis he was reliving, I went to him to tell him it was OK and he was safe. He had a moment where he stopped, looked me in the eyes and said “Bless you, you are a godsend. Thank you for everything.” And then he went back to his imagined control room.
At the funeral, I brought Mom in to the church and we looked at pictures of her and my father through the years. She admired how nice that couple looked. I asked her if she was ready to go see Dad, and she exclaimed with joy, “Oh, he DID come!” During the service, she pointed a finger discreetly at the casket and asked me, “Now, whose husband is that?” It was not until the military honor guard gave her Dad’s flag that a glimmer of realization set in her eyes.
According to the Alzheimer’s Association, Alzheimer’s takes a devastating toll on caregivers. Nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; about 40 percent suffer from depression. Due to the physical and emotional toll of caregiving, Alzheimer’s and dementia caregivers had $9.7 billion in additional health care costs of their own in 2014.
I see the same situation played over and over with families I meet at work. A spouse, caring for a spouse with dementia. The caregiver spouse is tired, worn, concerned. And I think about my dad and hope that I can help this couple so that things turn out differently. Caregivers, get help. Get support. Do not wait until it is too late. Call the Alzheimer’s Association helpline at 1-800-272-3900 or look here for help.
And now I will be spending the rest of the day honoring caregivers like my dad, and my brothers and I too, in memory of my mother. Until we find a cure for Alzheimer’s, the toll will continue on caregivers and their loved ones living with dementia. If you would like to donate to our team for The Longest Day, and help us fund the research that will find a cure, please click here.