My wife and I are marketing and business professionals. When my father said to us, “Promise you’ll do everything you can to keep Momma and me out of those nursing homes,” we agreed—though at the time we had little idea of what lay ahead. As our intelligent, boisterous, gregarious parents aged into needy shells of their former selves, we struggled to fulfill our promise.
There are so many things we wish we had known.
When our parents went into mental and physical decline, my wife Julie and I took them into our old, 1850’s era Victorian, home in a New Hampshire village. We built an apartment in our home for my parents, thinking we would help my 80-year-old father care for my 78-year-old mother, who had Alzheimer’s. But shortly after they moved in, Dad was diagnosed with a degenerative brain disease, Primary Progressive Aphasia (PPA), aka Frontotemporal Dementia (FTD), and within two years his needs surpassed Mom’s. Six months after my parents moved in, my wife’s 90-year-old mother broke her hip and joined our household … and our adventure in caregiving.
“By 2050, 27 million people will need long-term care in America. The vast majority … want to age at home,” says Ai-jen Poo of the National Domestic Workers Alliance. Caregiving is a multibillion-dollar industry. Politicians see a social and economic tsunami on the horizon; recent attempts to include over $150 billion into the Build Back America Act illustrate their concern. According to the Alzheimer’s Association, 6 million Americans have Alzheimer’s, and in the next 20 years that number is expected to double.
Each family or situation is unique, and full-time caregiving is an option many people simply cannot make, for a variety of reasons. Many who want to offer compassionate care eventually set limits on what tasks they will take on. Diaper changing is often the line they won’t cross, landing their loved one in a nursing home. The Caretakers: An Extraordinary Journey of Love, documents an extremely personal experience that millions will share. It’s a wake-up call for anyone who will need to provide late-in-life care. This story shares our blunders, bumbles, and tears, as well as joys, comical moments, and triumphs. It inspires readers to ponder, Could I do it? And would I want a loved one to give me that kind of care?
The Caregivers chronicles the seven-year journey as we cared for them until their deaths. I was a businessman with no experience in diaper changing, medication dosing, feeding, bathing, wheelchair transport, doctor’s visits, and other necessary tasks. Our experience is shared by millions of caregivers across the world. We made sacrifices. Our family and friends took sides. Our hearts broke, again and again. We fretted and doubted. Yet the exhausting experience also gave us moments of comedy, pure love, and joy. We did our best.
Dad – Leo Good
Dad was born in Albuquerque, NM in 1932. His father was a traveling salesman for such products as Fuller Brushes, Watkins Products and Minnesota Woolen. Being raised with four sisters it was always Dad that bore the scars of an abusive father. His sisters were treated differently. The family was dirt poor and in the midst of the dust bowl in the frigid San Luis Valley of Colorado they suffered near starvation. Dad entered the Marine Corps and was subjected to nuclear bomb tests at the Nevada test sites < see video >. He used his GI Bill to get his initial BA degree from the University of Colorado. A BS would follow from Adams State College and an MS from the University of Rochester.
He married in 1960 and had three boys over the course of three years. As a father he flourished, learning from the mistakes made in his own upbringing. As a guidance counselor in the Denver Public Schools he spent the summer months fishing and camping with the family in the Colorado Mountains and beyond. His guitar was his constant companion at all such outings. Sing-alongs were the norm for that period. He was an avid gardener and always had a very productive garden. He cherished his ability to provide for his family even if it was the basic necessities.
Upon retiring from the Denver Public Schools he and Mom relocated to a small town outside Cortez, Colorado (at the base of Mesa Verde National Park). Lewis was a farming community where they purchased twenty acres to build their retirement dream home. Dad expanded his vegetable garden and they sold their organic vegetables at the Cortez Farmer’s Market every Saturday in the season. The proceeds from this venture were used to cover the cost of their winters spent in San Felipe, Mexico in their camper. They enjoyed thirty years there until Mom was diagnosed with Alzheimer’s disease.
This is where our journey begins.
This is considered a very rare disease that affects less than 50,000 people per year. According to numerous media reports it is the diagnosis recently given to actor Bruce Willis.
- According to the Mayo Clinic Primary progressive aphasia (uh-FAY-zhuh) is a rare nervous system (neurological) syndrome that affects your ability to communicate. People who have it can have trouble expressing their thoughts and understanding or finding words.
- Symptoms begin gradually, often before age 65, and worsen over time. People with primary progressive aphasia can lose the ability to speak and write and, eventually, to understand written or spoken language.
- This condition progresses slowly, so you may continue caring for yourself and participating in daily life activities for several years after the disorder’s onset.
- Primary progressive aphasia is a type of frontotemporal dementia, a cluster of related disorders that results from the degeneration of the frontal or temporal lobes of the brain, which include brain tissue involved in speech and language.
- People with primary progressive aphasia eventually lose the ability to speak and write, and to understand written and spoken language. Some people develop substantial difficulty forming sounds to speak (a problem called apraxia of speech), even when their ability to write and comprehend are not significantly impaired.
- As the disease progresses, other mental skills, such as memory, can become impaired. Some people develop other neurological symptoms such as problems with movement. With these complications, the affected person eventually will need help with day-to-day care.
- People with primary progressive aphasia can also develop depression or behavioral or social problems as the disease progresses. Other problems might include blunted emotions such as unconcern, poor judgment or inappropriate social behavior
The video on the left below shows my father playing his guitar and singing “Bobby McGee” four years before moving to our home.
The video on the right shows him trying to sing the same song three years after his PPA diagnosis.
Mom – Martha Good
Mom was born in Denver, Colorado in 1935. Her mother moved her to Denmark, South Carolina after her father left them. Relatives in South Carolina tried to help her with the two children (Mom’s newborn brother, Jack Allen) and offered adoption but instead she placed them in an orphanage as she struggled to survive. Mom would stay in the orphanage for ten years suffering many emotional scars. Once back with their mother the two siblings had to care for themselves as their mother worked. It was mom who basically raised her younger brother. She did all the household work, cooking, cleaning the house, washing the clothes etc.
Her mother moved them back to Denver during Mom’s junior year in high school. She was placed in Denver’s South High School where she made many lifelong friends.
She married dad in 1960 and became the best mother three boys could ever ask for. Her life was devoted to her family. She doted on her boys. Every holiday was celebrated together and summer camping trips were adventurous and memorable. She was a chaperone for all school functions, which irritated her sons from time to time. She was the proverbial “Kool-Aid mom”.
Upon Dad’s retirement from the Denver Public Schools they headed to their 20 acre retirement paradise in the small town of Lewis, Colorado (the Four Corners area). They would enjoy their lives there until Mom was diagnosed with Alzheimer’s which is where this journey starts.
According to the CDC In 2020, as many as 5.8 million Americans were living with Alzheimer’s disease.
- Alzheimer’s disease is the most common type of dementia.
- It is a progressive disease beginning with mild memory loss and possibly leading to loss of the ability to carry on a conversation and respond to the environment.
- Alzheimer’s disease involves parts of the brain that control thought, memory, and language.
- It can seriously affect a person’s ability to carry out daily activities.
The video below shows mom during one of our four daily walks through the house and the power of music on someone in the non-verbal stage of Alzheimeir’s.
Mother in-law – Anna Schwan AKA Ma Schwan
Born in 1925, on Long Island New York as Anna Marie Knipfing, she was the oldest of three children. She married John “Jack” Schwan in 1948. His education from Alfred University in floriculture eventually landed his family in Rhinebeck, NY where he became renowned in the creation of hybrid anemones. They had two children, a son Paul and a daughter Julie five years later. They lived in Rhinebeck for 40 years. Jack passed away unexpectedly in his sleep in 2002. She remained in her home until 2015 when she fell down a flight of stairs and lay there for 18 hours before she was found. She begrudgingly found herself living with us in Hinsdale, NH, which is where her life becomes part of our journey in caregiving.
Diagnosis: mild autism, (paranoid) schizophrenia
Ma Schwan’s challenges in life could best be described as very similar to that of Russell Crow’s character, John Nash, in the movie “A Beautiful Mind”.
In 2021, the CDC reported that approximately 1 in 44 children in the U.S. is diagnosed with an autism spectrum disorder (ASD), according to 2018 data.
- Studies suggest that schizophrenia affects between 4 and 35 percent of adults with autism. By contrast, schizophrenia affects an estimated 1.1 percent of the general population.
Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. People with ASD often have problems with social communication and interaction, and restricted or repetitive behaviors or interests. People with ASD may also have different ways of learning, moving, or paying attention. It is important to note that some people without ASD might also have some of these symptoms. But for people with ASD, these characteristics can make life very challenging.
More information: https://www.cdc.gov/ncbddd/autism/signs.html
Schizophrenia is an uncommon — but widely known — condition. Experts estimate about 85 people out of every 10,000 will develop this condition at some point in their lifetime. Worldwide, there are about 2.77 million new cases each year.
- Schizophrenia refers to both a single condition and a spectrum of conditions that fall under the category of psychotic disorders. These are conditions where a person experiences some form of “disconnection” from reality.
The video below shows Ma Schwan at the dinner table explaining to Julie and me that two children had followed her out of her room. The hallucination was obviously vivid to her.