Gone 10 years… Thankfully, when I think of Dad (which is still almost daily), I remember him as I knew him when he knew me.
Dad’s story is not extraordinary. In fact, it’s because it is all too ordinary that it seems important to tell. Perhaps one story of saying goodbye can help others better understand and cope with their own loss journeys to a disease that gradually separates us from those we love and admire. What do these journeys teach us, and how do we best honor those we have lost?
The Man:
Dad was born and raised in Dubuque, Iowa, the oldest of five children. He went to college, started a business, and got married. He worked hard, and his family grew. I was the 6th of 8; 2 boys and 6 girls. Dad was a pillar of our small community and church congregation. He was a regular on the bleachers at school activities, a loving father, and a strict disciplinarian. He was competitive in golf, poker, or a driveway basketball game. He loved fishing, sailing, road trips, and all things outdoors. Although his size and sternness certainly deterred a few boys, it was his big laugh and hugs that I best recall. He was wise. I didn’t always appreciate it when I was young, but he guided me through virtually all of my important decisions in life.
After cancer took mom way too young, he was the one who saw me through graduate school, guided me through budgeting and student loans, and helped to plan my wedding. He was never particularly social on his own, so we were happy when he found love and companionship with his second wife.
The Disease:
Less than 5 years into their marriage, his wife alerted us that she had noticed some changes. They wintered in Florida, and it seemed harder for him to make the transition that year. He was a bit “off,” and there were a few episodes of uncharacteristic irritability. One of my older sisters was a nurse at the University of Iowa, and before Dad and his wife headed back to Florida that Fall, she arranged an evaluation. The results confirmed evidence of early decline. The “early” was good, but the rest, was scary. It was 2002. Dad was 76, and he had been diagnosed with Alzheimer’s.
As terrifying as that was, I’m grateful that we had the information early. Dad’s doctor initiated treatment; first with Aricept (donepezil), and later with Namenda (memantine). Whether the progression was slowed by the medication, or it was simply dad’s course, we had several years of very gradual change. There was forgetfulness and repeating, but he remained active with good quality of life. Subtle changes did continue, and within a year or two, the winters in Florida came to an end. Changes in routine seemed to cause greater disruption. There were more frequent episodes of irritability and suggestions of paranoia. His wife no longer felt comfortable making the trip and being far from family.
As the years passed, things changed for all of us. I completed my fellowship in Geropsychology (inspired by a need to better understand what was happening with Dad), moved a few times, and began work in the real world. My younger siblings completed college, started jobs, and began growing their families. The older siblings were well into family life with children. I am grateful that we had each other. Conversations turned more and more to dad’s health and the future.
As I moved from decisions about education to career, I wanted guidance from the greatest businessman I’d ever known. Phone conversations, however, were briefer and details were quickly forgotten. When Dad walked into our hometown bank and handed a large check to an unsuspecting customer requesting that it be deposited, we were struck by the realization that his impairment had progressed. Physically, he was strong, but he could no longer manage his affairs alone or help us manage ours.
I was a late bloomer when it came to children. When we adopted our first son, I wanted him to know dad. I wanted him to hear his laugh, feel his love, and know his wisdom. Dad met and held my oldest a few times, but he couldn’t remember his name or if he was a boy or a girl. Dad’s words were fading, but I remember that Christmas when he held my son and lovingly sang a song with simple “doo doo doo” lyrics.
The next year was the last Christmas that Dad celebrated with all of us. On that day, we made sure that he was seated in an area where everyone could come to him. He smiled throughout but was clearly confused by the chaos and had difficulty tolerating the activity and volume. As he climbed into the passenger seat at the end of the day (he had given up driving the year before), everyone gathered outside. We rolled down his window, and he smiled and blew us all a kiss.
Things had gradually become more challenging for his wife. She was taking care of everything at home, and he was starting to have issues with not sleeping at night. He was bigger and physically stronger than she. He would get up and wander, and she was very nervous that he might try to leave the house or fall. He also began having occasional episodes of incontinence, and like many, this was the point that we had to consider options for increased care.
The transition to the nursing facility just blocks from their home went smoother than most of us expected. Dad seemed comfortable there, as they had the right amount of activity to keep him occupied but not overwhelmed. His wife spent several hours with him most days, but she was finally able to sleep at night. Unfortunately, he was only there a couple of weeks, when he fell and broke a hip. As this was really his first physical failing, no one questioned the recommendation for surgery.
Dad didn’t handle the combination of pain, pain medication, anesthesia, or the chaos of the hospital well. For the first time, he became extremely agitated. Pain will do that, especially when you have difficulty understanding it and expressing yourself. He yelled; he cursed; he even struck out physically at hospital staff. To protect staff, he had to be restrained and further sedated. Over the next several days, things began to stabilize. Medication kept the pain at a manageable level. Staff had come to know and love Dad, and we all would soothe him by joining his repeated song, “You are my sunshine, my only sunshine…” Outside of his singing, there were few words.
Given his increased care needs, when Dad was ready to discharge, we all agreed to have him transferred to Arbor Springs in West Des Moines, a specialized dementia facility. Three of us lived locally, and it was less than 2 hours from his wife. The adjustment was reasonably smooth. The staff was wonderful, and the facility was beautiful, but much of whom we’d known as “Dad” was gone. His words were few, and he never walked again. Being so physically limited and still affected by pain, his smiles were now replaced by a pained grin or vacant look. Hospice provided extra support. We brought photo albums and came during mealtime to encourage him to eat. It became quickly obvious to all that we were nearing the end.
My younger sister and I were with him the night before he died. We knew the end was close. He was peaceful but not aware of our presence, and his breathing was shallow. We talked about staying with him and updated family members. Staff told us they would call and urged us to get some rest at home. As there was really nothing we could do there, we went home to our young families. The night was restless, as I waited for the phone to ring.
When I walked into his room early the next morning, I instantly knew. He was still warm, but there was no breath. He looked peaceful. I called the nurse. She checked him thoroughly, looked at her watch, and noted the time. Dad was gone. It was April 1, 2013; nearly 11 years after being diagnosed with Alzheimer’s Disease.
It was very sad. It still is. I loved this man. He was my hero and, really, the greatest man I had ever known. I still miss his laughs and big hugs, and I desperately need his advice. I want my sons to know his determination and faith, that combination of strength and tenderness. But dad lived a good life and was ready to go. Honestly, he had been gone for the last few months and had been gradually “going” for the last several years. As they say, losing someone to Alzheimer’s, there really is A Long Goodbye. The strong, proud, competitive man we knew was ready to go to his spiritual home, and he would now join Mom and many other friends and relatives.
During the last year or so of Dad’s life we had heard that his younger brother was also having memory issues. I hadn’t seen him in a while, but at the funeral, Uncle Jack curiously sang his words and it wasn’t clear that he understood what was going on. Uncle Jack died the next Summer. Another brother, a retired Catholic priest, died just a few months later. Father Tom had been participating in a research study, and the autopsy revealed that his brain contained Alzheimer’s plaques and tangles as well as Lewy Bodies. Three brothers, all incredible men, all with dementia, gone within 2 years.
The Lessons:
10 years later, I still miss Dad and think of him almost daily. As so many have experienced, there is no easy way to watch a loved one fade with dementia. The memories of Dad looking at me without recognition, confined indoors, unable to coordinate the movement of his legs, are still difficult. Fortunately, most of my memories are of the 40 years that I had with him when he was Dad….singing while making pancakes too early in the morning, cheering from the stands at our volleyball games, and laughing loudly late at night while watching his favorite sitcoms. The hard work, the humor, the shared wisdom, the love. These are the memories I cherish and that continue to inspire me forward. These are the memories of Dad that we continue to nurture and share. My children know Dad through stories and photos.
I am grateful that we had him evaluated early. With that information, he received early treatment. It’s true, there is certainly no cure. Treatment options are limited, and available treatments do not benefit everyone. The best chance of benefit, however, is starting early, and we did this with Dad. He had some good years after diagnosis. This gave us time to spend with him, appreciate him, and prepare for the future. While he was doing well, he made decisions as to how his affairs would be handled and who would be in charge. We were all aware of Dad’s wishes, and this made decision-making during a difficult time (and with a large and now blended family) much easier. Having information early helped us all prepare. We read and shared information with each other. This helped us not take it personally when Dad had little to say on the phone or seemed less interested in our children. Our interactions with him were more relaxed as we knew not to quiz him or correct him on the date or specific details, but rather, we used our time with him to connect emotionally.
The significance of our family history has us all aware, and perhaps worried. What do you do? How do you prepare? These are questions we are starting to wrestle with as even the youngest in the family is nearing 50 and the older siblings are in retirement. For me, information is key. Although I still hope and support research toward a cure, in the meantime, I am extremely interested in research on brain wellness strategies. More and more, we are learning that things that we do makes a difference in brain health. How much we move, what we eat, and how much we challenge ourselves to continue to learn are all important. So, I eat more dark berries and dark, leafy greens. I’m trying to stay active, and I always enjoy learning new things. I’ve stopped taking Benadryl, as there are a number of medications (even over-the-counter ones) that have negative effects on brain health. I’m trying to figure out meditation, and I’m always working on managing stress. I’m also living for now. I’m spending time with my kids and appreciating all the good things and people in my life.
Dad’s story is not unusual. Based on the 2022 numbers provided by the Alzheimer’s Association, 6.5 Million Americans over the age of 65 are living with Alzheimer’s. While there is encouraging news that the incidence rate (proportion of the population with the disease) is slightly decreasing, likely due to improved management of chronic conditions and information on brain wellness, the number of those diagnosed continues to grow as our population ages. Worldwide, the numbers are staggering.
Fear can paralyze. Stories can inspire. Let’s share our stories. Let’s continue to learn and continue to support work toward a cure. Let’s support the diagnosed and the loved ones walking alongside them. Let’s cherish relationships and the good in the world. Let’s do what we can to nourish our bodies and our brains. Let’s remember those we have lost and continue forward in their honor, better prepared for the future.
Share this story and write about your own. We are better together.
Find more information on Alzheimer’s and brain wellness here.
Do you (or someone you know) have risk factors or signs of early decline? Talk to your doctor and/or schedule an evaluation with Dr. Laurin.
Join a Walk to End Alzheimer’s.