Remembering Dad | Daughter looks back on her father’s battle with dementia

Editor’s note: This article, which originally ran about 15 years ago, has been updated to reflect current Alzheimer’s disease/dementia educational and fundraising activities taking place in the community this month.

“And it didn’t matter to me that he’d already repeated that before. I could hear it forever.” — Patti Davis, from her book, “The Long Goodbye,” about her father, former President Ronald Reagan, and his battle with Alzheimer’s disease.

Nearly 200 people took part Saturday in the 2021 Humboldt County Walk to End Alzheimer’s, raising more than $75,000 to date for Alzheimer’s care, support and research.

I’m thankful for each step these folks took in the fight against this devastating disease, which cruelly took my father in September 2003.

I’m also reminded of a few other things for which I’m thankful. I have good health, a meaningful job and loving family and friends. I’d have to say one of the things I’m most thankful for, though, is that I had a chance to get to know my dad before he died.

Dad

Technically, I grew up in a two-parent household, but I was really raised by my mom. My dad spent much of his time working as a hospital administrator, socializing with his pool buddies and playing the ponies at Golden Gate Fields in the Bay Area. He always wore neatly pressed suits and silk ties. His silvery-white hair and nails were well manicured. He spoke eloquently, with a charming Texas drawl, one of the only things that remained from his rural Southern upbringing.

Dad and I, for the most part, had a pleasant relationship. He was out the door before I awoke each morning and, when he did make it home for dinner, our conversations were usually focused on how I was doing in school. I was a pretty good student, and I heard my fair share of, “I’m proud of you,” in relation to my studies. Still, the three words I longed for, “I love you,” were rarely spoken.

I loved him. He was my dad. But, as a child, I longed for a father more like Ozzie Nelson, Ward Cleaver or Mike Brady. I wanted the kind of dad who spent time with his kids playing ball in the front yard, who said he loved them every day, who freely gave bear hugs, who talked with them and gave them advice about life’s joys and disappointments.

Now, as I said I am indeed thankful, because in time I did get that kind of dad, not in a way I’d expected or in a manner I’d wish on anyone — ever. You see, when I was 33 years old, Dad started to display signs of dementia.

The initial symptoms were subtle. He began repeating himself, losing his wallet or his keys, forgetting he was cooking something on the stove and, most telling, the man who was meticulous about balancing his checkbook, began bouncing checks. The symptoms worsened over time and, eventually, a doctor gave us a diagnosis.

The hardest time for Dad was when he realized something wasn’t right. He was aware enough to know that his short-term memory was failing.

“I think I’m losing it,” he’d say.

In time, fortunately really, Dad lost all awareness that he had this progressive disease. He began to live not for yesterday or tomorrow, but in each tiny moment. That’s all he had. When prompted, he could remember events from his early years, and he did — unlike some who suffer from dementia —remember the names of his immediate family members, but most of his memories seemed to vanish as if an eraser was slowly working its way through his brain.

My mother, sisters, brother and I could only watch the devastating effects of the dementia unfold. We couldn’t save him or cure him, we could only see that he was safe, loved and cared for.

Mom, bless her, worked full time at a hospital and then took care of my dad during her “free” time. To say tending to my father was hard on her is an understatement, and there were times when I worried as much about Mom’s health as my dad’s. I cried about my father’s illness, but also shed more than one tear over the thought that I might lose my mother, who at the time was fighting breast cancer while she struggled to be Dad’s primary care provider and carry on with her day-to-day routine.

Dad died on Sept. 8, 2003. He was 76 years old. In his last six months, dementia began to claim him rapidly, and he often withdrew into a silent shell. Still, there were the fearful night shrieks, shouts of defiant anger, unusual requests (like the time he asked to eat a small cactus sculpture my mom had placed next to the bed) and, on a sweeter note, those priceless moments when his blue eyes would clear, he’d look right at us and say those words: “I love you.”

Because of this disease, my dad, who was always on the go, started to stay home. He couldn’t venture far because he’d forget where he was going. He stayed put with his family for the first time in his life and, in that time, he and I had plenty of opportunities to interact. Dad and I finally got to know each other.

Of course, the dad I became acquainted with was quite different than the successful man all of his colleagues and friends knew. In fact, most of those people fell away as his condition worsened. It pained me to watch Dad try to phone — and phone and phone — his old friends, some who’d make every excuse to get off the phone when he called and repeated conversations over and over again, unaware of what he was doing. He’d get so frustrated.

Those incidents were painful to watch, but also made me more determined to see that my dad be as comfortable and as loved as he could through this last journey.

You see, the man his friends forgot was the same man I grew to love unconditionally. He was the guy who was happy to wear old sweatpants and a T-shirt, who often forgot to brush his hair or shave. He was also the man who hugged me, drank coffee and shared light chit-chat with me at the corner bakery and said he loved me often.

Alzheimer’s Association

According to the Alzheimer’s Association (https://www.alz.org), more than six million Americans are living with this disease and more than 11 million Americans provide unpaid care for people with Alzheimer’s disease and other dementias. It is estimated that more than 3,000 people on the North Coast have Alzheimer’s disease.

Held annually in more than 600 communities nationwide, the Alzheimer’s Association Walk to End Alzheimer’s is the world’s largest fundraiser for Alzheimer’s care, support and research. For the past six years, Humboldt County walkers have taken to the streets to walk and raise funds for the cause. And even though this year’s Walk to End Alzheimer’s wrapped up yesterday, fundraising for the 2021 event marches on until Dec. 31.

Donations can be made online at act.alz.org/humboldt2021 or by mailing a check to the Alzheimer’s Association, P.O. Box 2542, McKinleyville, CA  95519.

On Oct. 20 and 21, the Alzheimer’s Association, in partnership with the Humboldt Senior Resource Center, will sponsor a virtual “Renewing Care and Connections” dementia conference. For more information or to register for this event, call 707-443-9747, ext. 3230, or email abruhnke@humsenior.org.

Dad

Alzheimer’s is a horrible disease, one that has caused so many so much pain. It robs every ounce of a person’s being and causes great stress and sadness for family members. Ironically, for me, there was one positive aspect. It was not until my dad’s decline that I found my father, a man I can say I love and I dearly miss.

My dad’s struggle with dementia was, I’d say, a tragic love story. Within the heartbreak, a father and daughter found each other and came to understand each other in a special way.

Some of the memories of my dad make me laugh; some make me cry. As Dad was losing his memory, I was gaining memories that I still cherish today. My dad may not have known it, but he left me a legacy, and for that I am thankful.

I remember the time I took Dad with me when I went to get my hair cut. It was hard to get Dad in and out of his wheelchair, so I decided to park the car right in front of the salon and told him I’d wave to him while I was inside. I told him to wave back when he saw me. It sounded like a good plan.

I kept an eye on him, but apparently not close enough. When I walked out with my new do, Dad had pitched a bag full of empty Diet Coke cans my mom was going to recycle out into the middle of a busy street in Berkeley.

“Dad, you can’t throw cans in the street,” I said sternly.

“They were in my way,” was his answer.

What could I say? I gathered the cans from the roadway, buckled Dad up and off we drove to another errand.

I remember another night when one of my sisters and I loaded Dad up in her VW and drove over to a vegan restaurant in Oakland. We thought it’d be a treat for Dad to get out of the house. Big mistake. One of the symptoms of his dementia was the inability to differentiate what should and shouldn’t be said aloud.

“What the hell is this?” he said loudly as we brought him a plate of greens. He spit the food out on his plate. My sister and I packed up our own meals in to-go boxes, got Dad back in the car and drove home. Good intentions, not such a good outcome.

Dad and I went out on many walks together while he was sick, and some of my best memories were formed while I pushed him around town in his wheelchair. I’d usually take Dad to his old haunts in an attempt to stir up memories. We’d go to the hospital he’d worked at, the bar where he had liked to shoot pool, the coffee shop around the corner or to the horse races. Folks would come up and greet Dad while we were out. In his day, he was pretty well known around town, and many people in the neighborhood knew him by name. He also had a knack for recalling names and prided himself in the fact that he could greet people accordingly.

As dementia deepened, sadly, Dad couldn’t reciprocate any longer. When people would come up to him, he’d say hello and give a smile, but then after they’d leave, Dad would ask me who they were.

Later, it got harder to bring Dad outside; he was scared to leave the confines of his home. About a year before he died, in a desperate attempt to try and turn back time, I thought I’d take him to the horse races. Dad — always a savvy better — sat in the bleachers, unable to focus on the racing form or the horses, and he didn’t even want to eat the Turf Club’s turkey lunch plate, which he had always raved about. People came up to say hello, but he just stared at them. He didn’t know who they were. He didn’t know why we were where we were. We left Golden Gate Fields after two races. Dad wanted to go home.

I last saw Dad about three weeks before he died. I was heading back from a road trip and stopped by the house to say hello. I knew my father’s health was fading fast. I had seen him about a month before that visit, but the difference in his appearance this time was devastating. Dad was quiet, staring blankly to the side. His body was thin, his eyes glazed over. He didn’t respond, though he’d track us as we walked through the living room. I held his hand and tried to feed him a little soup. I hid my tears. Dad never liked tears. When I left to head back to Humboldt County, I leaned in close and told him I loved him. He looked at me and mouthed, “Love you.”

Letting go of his hand was one of the hardest things I’ve ever done, because I knew that this was probably the last time I’d see him. But I also knew that dad and I were OK with our relationship. We’d found mutual respect, understanding and most of all … love.

I often think about Patti Davis’ description of her own father, Ronald Reagan, and his battle with Alzheimer’s. They had a tumultuous relationship, but in his illness, they, too, found a balance:

“I must also tell you that if you are with someone who has Alzheimer’s and you pay close attention — if you open your heart and your mind — you will see that the disease can never cross the boundaries of the soul. For years I had gentle and true conversations with my father — between his soul and mine, sometimes in total silence. There will be people who say that didn’t happen, that it can’t happen, it’s just a wishful fantasy. Don’t believe them.” — Patti Davis

For more information about the Alzheimer’s Association, go to https://www.alz.org. Local families battling this disease can contact the Humboldt Senior Resource Center Alzheimer’s Resource Center, Redwood Caregiver Resource Center, Area 1 Agency on Aging, Adult Day Health Care of Mad River and the Alzheimer’s Association for support.

The Alzheimer’s Association provides a free nationwide 24/7 Helpline (800-272-3900) that receives more than 310,000 calls annually and is staffed by specialists and master’s-level clinicians who provide support, offer information and suggest referrals.