On December 12, 2013, my family received the news my 59 year old mother had been diagnosed with frontotemporal dementia (FTD). It didn’t take long to search the internet and figure out how terrible this disease was and how our lives were going to change very quickly. Numbers of people, even the most educated doctors, have not heard of FTD and are not familiar with the signs and symptoms. Much like Alzheimer’s it is difficult to diagnose and can be mistaken for other illnesses or disorders. While the Alzheimer’s Association is easily identified as a resource for those living with and caring for individuals with Alzheimer’s disease (the most common form of dementia), many people do not realize their services are available to caregivers and those diagnosed with other forms of dementia. Having experienced being a caregiver firsthand, (although my dad did tenfold what I did) most people don’t realize or understand the profound impact the disease has on the person, family, caregivers and even society as a whole.
Alzheimer’s and dementia are grossly understudied, under-researched, underrepresented and dare I say undervalued. For the past 5 years, that is why I’ve been Walking to End Alzheimer’s and the 46.8 million people around the world living with it and other forms of dementia. 2015 was my first year participating in the Walk to End Alzheimer’s and it won’t be the last. I’ve been walking and raising awareness ever since! This year, the walk was virtual but my sister and a few of our friends, who are the biggest supporters, walked laps in the cold rain around the courthouse in Pittsfield.
While there is no cure for dementia, and it is ultimately fatal, I hope with the work the Alzheimer’s Association is doing and the awareness walk participants are bringing to the disease, there one day will be. By calling attention to the disease, I hope others become familiar with the signs, symptoms and overwhelming statistics. The company I work for, Dot Foods, became a National sponsor in 2015. The founder of Dot Foods was stricken with Alzheimer’s so it hits close to home for many employees. Each year the partnership has grown, as well as the dollars contributed by employees, at a rate of almost 30% year-over-year. Since the campaign began, Dot has been able to contribute over three quarters of a million dollars to the Alzheimer’s Association!
I have been involved with the fight against Alzheimer’s Disease for a long time. Years ago when I heard there was going to be a local Alzheimer’s Association Board of Directors established in Quincy, I joined immediately. I had reason to do so. I really never shared that reason until now.
It was the summer of 1983 when my world was upended with a phone call from my mother in Kansas City saying that my father was diagnosed with Alzheimer’s. It was my first encounter with the disease. Having your father’s memory fade away and living four hours away made for a difficult period in my life. My Dad’s physical status affected my mother’s well-being as well. My mother never drove a car and was completely dependent on my father. In the early stages, he would forget how to drive back home from the grocery store, a trip he made weekly for years. One day he drove the wrong way on a one-way street, and he had to discontinue driving. For several weeks after that, I would drive the four hours to Kansas City to take them to the store and help out wherever I could. I even offered to quit my job and move back home to assist, but my Mother would have no part of it.
After 18 months of being his caregiver, my mother made the brave and bold decision to put him in a nursing home nearby. She would call a cab to visit him daily. This went on until he died in 1985. It was only two years after he was diagnosed and less than 6 months since he’d moved out of the house, but it seemed like 20 years. The constant concern for his well-being took a toll on my mother, brother (who was in the Air Force) and me, as well as our families.
Now, some 35 years later, one of my best friends and a former co-worker Dennis Oliver is dealing with Alzheimer’s. Having joined the Alzheimer’s Association Board in Quincy years ago and after going through what I did with my father, I could see the same symptoms in Dennis at the age of 59. I suggested that he see a doctor, but he fought the idea for the next 18 months. His quality of work began suffering from his forgetfulness and his frustration was increasing each and every day. I discussed the issue with him and his wife Lori again and he finally saw a doctor who diagnosed him with Alzheimer’s Disease. Lori, like my Mom, was dealing with his safety concerns at home and I took on the caregiver role for him at work. Eventually, he could no longer continue working as his memory was fading. As his boss, the conversations with him about ending his radio career were gut- wrenching. As his friend, they were nothing short of ripping my heart out! He really wanted to continue, but despite his fighting the idea, he knew he couldn’t.
It is a burden to live with Alzheimer’s, but the real burden falls in the lap of the caregiver. The constant concern for the loved one’s well-being can have negative effects on the caregiver’s health. They need more help than anyone realizes – unless you have been there yourself. This is why I walk to End Alzheimer’s. This is why we need everyone to help where they can to end this dreaded disease. This is why we need to assist those with the disease as well as their caregivers. I was a part of this year’s Walk to End Alzheimer’s on September 12th in Quincy. For those who also participated that day and secured funds for the cause, Dennis Oliver and I would like to thank you for helping the hundreds of others dealing with Alzheimer’s. We can only pray that this was our final Walk to End Alzheimer’s Disease.
I started walking 10 years ago. My new daughter -in-law put together a team of church members to walk since she had lost a family member to Alzheimer ’s disease and our new church was looking for some outreach areas to donate funds. Kristin was actually selected as a spokesperson to address the crowd before the walk began. As a group, our church team had met several times at our home to make walking sticks from cedar branches that my wife and I had cut. It was a good bonding experience and made for a nice presentation at the walk as ours was the team with the walking sticks.
But my passion didn’t truly begin until I saw a program at my Rotary club about Alzheimer’s. Until then I just viewed it as another of those diseases that affect people in a disruptive way. But I learned that day that Alzheimer’s kills. The video we saw showed how the disease randomly ‘scrambles’ one’s brain, affecting speech and cognitive skills as we all experience. But it was startling to me to learn that it finally scrambles the autonomic nervous system that control heart and breathing which makes Alzheimer’s a killer.
This brought home to me the seriousness of this disease. At that point in time, I had not had a close family member suffer from Alzheimer’s, but I started to look at those I knew and it was life changing.
I’m a funeral director, so I should have better understood the disease. Oh, I most certainly understood the chaos and heartache it brought to families. I consoled many a survivor who suffered the guilt of having felt that they lost their loved one years ago, although the death was just recent. But I never knew that the disease was the actual thing that caused the death.
More recently, my mother-in-law was diagnosed with Alzheimer’s. For years her husband was able to take care of her and shield her from the life altering changes that would ultimately occur. Finally, he had to put her in an excellent Alzheimer’s unit.
The Coronavirus pandemic has wrought havoc on patients and families alike. My wife has not had physical contact with her mother since early March. Before that she cut her hair, painted her nails, gave her back rubs, and generally was a hands on caregiver. That has been replaced with phone calls while looking through a glass door since no physical contact is allowed.
So I walk hoping there might one day be a cure that someone suffering from this disease might survive and return to a normal life. I walk to help the local chapter have funds to get the word out to inform others (like me) about what the disease actually does. And I walk because of the people I know that suffered from Alzheimer’s when I didn’t realize it was killing them. I always think especially of Allen Echternkamp, the sexton of a small rural cemetery with a steel trap mind who could tell you where a grave was or who owned a section without ever looking at a plot map. To see this great mind reduced because of this awful disease was a tragedy. We all need to do what it takes to find a cure, and that’s why I walk.
“You are not too tall , you are just statuesque!” This was Dad consoling me in middle school, as I shot several inches above the boys in my class. My father always knew the right thing to say, even if I wasn’t sure I wanted to be statuesque. He made me feel special and deserving, and he was always in my corner.
Dad left my sister, brother, and me with so many happy memories. Growing up we went on numerous driving trips, and Dad always pretended he had a CB. He’d make the squelching noise and then speak into his cupped hand, “Breaker One Nine, Breaker One Nine, this is Batty Daddy, Over.” We would laugh, and sometimes groan. He was such a joker.
And he was an avid reader. Dad read aloud to us all the time. We listened to many novels, but I most remember collections of short stories. Dad would make funny voices for the lines we loved: Mrs. Piggle Wiggle ’s Radish Cure with, “Ing e a ink of ater, Addy,” Penrod and Sam ’s, “Excuse me, but I must ‘a’ got your bumpus!” and the always popular Elephant’s Child’s, “This is too butch for be!” from Just So Stories.
Dad was also very artistic. He painted pictures, made furniture, and carved wood. One of his favorite creative outlets was playing guitar. Dad taught himself to play when he was young, and he loved all types of music. He played Beatles’ songs as we kids did the dishes in the kitchen, and we sang along. He played Country & Western ballads for friends and family. As we got older, Dad played guitar with my brother, and eventually with my son. Dad wrote his own songs for different occasions, including one that celebrated my son’s favorite TV show at the time, “Alex Mack.” Over the years, Dad amassed quite a guitar collection, which he enjoyed displaying. He just always loved music!
Dad started showing signs of Alzheimer’s in his mid-sixties. Mom noticed it first. Dad was always so outgoing and gregarious, the rest of us didn’t catch on right away, and Dad did not want anyone to know. But eventually it was apparent. Mom did everything she could to keep life as normal as possible. She and Dad took a couple more long driving trips over the next few years. When that was no longer feasible, Mom made sure they took walks outside, saw friends and family, and listened to lots of music.
I live in Illinois, and my parents lived in Florida, where I was raised. Being so far away from my parents during this time was hard. My husband and I took our normal annual trips down to visit, but that was definitely not enough. So, with my husband’s support, I left my job and started traveling down to stay with my parents every month or so. My first thought was to use these trips to support my mother. The caretaker’s role is just incredibly hard, with so much stress and worry about doing the right thing and making the right choices. It can also be lonely. I wanted to help Mom out in any way I could by visiting her frequently.
I believe my trips did help my mother. But what I didn’t expect was the absolute joy I derived from spending time with my father. I will forever cherish the memory of those visits. I stayed close, and I am incredibly grateful that I did. Even as Dad progressed through the disease, I tried to engage with him as he had always engaged with us. I took him on walks. I read him the stories we enjoyed when I was a child. I made the funny voices for Mrs. Piggle Wiggle and Penrod and Sam and Just So Stories , and Dad laughed. We listened to lots of music, and Dad snapped his fingers and tapped his toes. I sat very close and rubbed his arm and held his hand. And Dad would smile. He smiled a lot. And I did, too.
Dad passed away a few years ago. I miss him very much – we all do. Mom, with some help in the house, had been able to keep Dad at home. Mom is truly incredible. She still worries if she made all the right choices, but I know Dad’s life was happy and comfortable until the very end.
My hope in telling my story is that everyone will stay close to an affected loved one. It can be scary when this happens to someone you care so much about. You may subconsciously start to pull away. Don’t. Instead, get closer. Your loved one still enjoys all the activities they did prior to this happening to them, and I encourage you to continue as many of those activities as you can. You will positively impact your life just as much as the life of your loved one.
Youngsters should stay close as well. Children may not understand what is happening to their loved one, and there can be a tendency to shelter our children from seeing their loved one decline. But children can help and children want to be helpful. I wrote a children’s book to share this message with as many youngsters as possible. “Grandpa Doesn’t Remember My Name” is available on Amazon. I hope my book opens dialogues about how children can help loved ones suffering from dementia.
Alzheimer’s is something we never thought would affect our family. My mother-in-law Gerry was diagnosed in 2010. While it took her memory and elements of her personality with it, her spirit remained until the very end of her life.
Gerry, though my mother in law was more than that to my wife and I. When I am speaking about Gerry, our feelings for my father in law Fritzie were similar. They were our parents, friends and supporters throughout our lives. We all read articles that purport this and we say to ourselves “yeah right”, well you could ask many people and they will agree, they were special; loving, non-judgmental and fun loving.
It was so easy to be with both of my wife’s parents. Respect and love was how we always interacted. When I married my wife, I gained 2 more loving and beautiful parents. They always put us first and supported all of our life’s decisions without judgement.
Fritizie passed in April 2016 as a result of long term heart disease and COPD. One of the ways we believed Gerry dealt with his passing after over 50 years of marriage was to live in the past and sadly, but fortunately Alzeihmers facilitated that. The disease progressed to the point she didn’t remember she was married or at times who we were. However most of the time she kept her fun loving spirit and sense of humor.
We have no regrets, we were able to care for both Fritize and Gerry in their home with the aid of a caregiver and in our home with the love and patience they showed us for over 30 years. We moved Gerry to a local facility when her disease could not be managed safely in our home. She passed in hospice, in our living room in October 2017.
We are learning so much about the etiology of Alzheimer’s and so many other diseases. I am now a Food For Life instructor, have my own teaching company (www.letseatgreat.com) and am licensed by PCRM (www.pcrm.org). I teach people the benefits of a whole food plant-based diet. A vegan diet shows promising outcomes in reducing the development of Alzheimer’s according to studies published in journals such as the American Journal of Clinical Nutrition and The Journal of Nutrition, Health & Aging. My hope is that I can help some people and their families and spare them from the ravages of this disease.