HINSDALE, N.H. — The number of people in the United States age 65 and older reached 55.8 million in 2020, or nearly 17% of the population. That is estimated to grow to 73 million by 2030, and by 2050, it is estimated that 27 million people will need long-term care.
That figure may be low.
At some point in their lives, statistics say that 70% of adults 65 and older will require long-term care, with an average stay of 3.2 years. That could number over 50 million people by 2050.
For Victor Good and his wife, Julie, of Hinsdale, New Hampshire, taking care of their aging parents in their home became their life, as they cared for his mother and father and Julie's mother.
During the final eight years of their lives, all three parents suffered from some form of serious dementia.
Victor's father, Leo Good, was diagnosed with frontotemporal dementia (FTD) - the same disease actor Bruce Willis has been diagnosed with - and died in February 2019 at age 87. His mother, Martha, suffered for 18 years from Alzheimer's disease, which worsened with time and eventually led to her death at age 85 in December 2019.
Julie's mother, Anna Schwan (or "Ma Schwan," as the family called her), had paranoid schizophrenia, and died in 2022 when she was 97 years old.
The experience of caring for their parents in their home, what they learned from it, and what caregivers can do to improve the experience for everyone is chronicled in Victor's newly released book, The Caregivers: An Extraordinary Journey of Love.
This independently published book offers an honest look at both the humorous and the horrific aspects of aging and of the Goods' all-consuming efforts to help their parents spend their final years at home, despite each of them suffering from conditions that only worsened as the end of life drew closer.
Victor Good's major conclusion will surprise no one. His family's experience, he writes, "showed us how unprepared we as a society are in caring for our aging [populace]." He said, "Our healthcare system can't begin to handle this in any way."
Yet, at the same time, the Goods discovered ways to bring joy to their parents' last years, as well as gain a sense of personal satisfaction that they were doing their best for their parents under the circumstances.
Enjoying their retirements
Victor writes that his father and mother had enjoyed a long and satisfying retirement before they moved to their son's home in Hinsdale.
An educator, musician, and master gardener, Leo Good retired in his mid-50s. He and Martha had planned well and bought a retirement home on 20 acres in rural Colorado in Lewis, a small town near Cortez.
For over 25 years, they enjoyed their life there. They were active in a number of groups, from gardening to painting. His father grew crops and sold them at the local farmers' market.
They owned a much-loved recreational vehicle, which Leo used as his "man cave" for reading or napping. They traveled with it extensively, taking it to the Sea of Cortez in Mexico and living in it there during the winter.
Victor said that his parents truly enjoyed their retirement life. They loved where they lived, loved traveling, and loved the numerous activities they were involved with. Both of them told him, "Our dreams came true," he said.
Even after Martha was diagnosed with Alzheimer's, Leo was able to care for her on his own for quite a while. But taking care of both a 20-acre property in rural Colorado and a wife with advancing Alzheimer's - and living literally hours away from any major medical facility - would eventually prove too difficult.
Victor and Julie talked with his parents about moving to their home in New Hampshire, where the couple would be able to help. It was a hard decision, but their parents eventually agreed to the move, his father requesting of him that Victor do what he could to help "keep them out of a nursing home."
The move was fortuitous, as was its timing.
Little did they realize that shortly after the move was completed, Leo Good would be diagnosed with FTD and would deteriorate rapidly. Within two years he would need even more care than his wife.
Preparing for final years
Victor and Julie Good had done marketing and worked as business professionals and entrepreneurs in Florida. Semi-retiring early, they bought a large 1850s Victorian fixer-upper house in Hinsdale in 2011 to be closer to Julie's mother, who lived a few hours away in New York state.
The plan was to restore the house, which was in need of a great deal of work. Those plans called for creating a small apartment for Victor's parents, then eventually converting a carriage house into its own separate home for them.
Both projects proved to be formidable, expensive, and time consuming, especially with the Goods doing much of the work themselves.
When the carriage house renovation was finished, the Goods did their best to make it as much like his parents' Colorado home as they could. The same photos lined the hallways. Easy chairs and the television were set up just as they had been back home. Even the kitchen cabinets matched those in the Colorado house's kitchen.
Victor said that he felt a sense of relief when his mother, mostly non-verbal at this point and given to spelling out words, walked into the completed house and spelled out "H. O. M. E."
On the other hand, Ma Schwan, long widowed, was living on her own in New York in a two-story home, with her bedroom on the second floor - hardly a suitable setup for a 90-year-old with growing stability issues.
Shortly after Victor's parents were settled in their new home and the family had worked out a viable routine, they got a call that Julie's mother had taken a bad fall off her steps and had lain injured on the floor for at least 18 hours after the fall.
In the hospital, X-rays showed that Ma Schwan had a broken hip, bruised ribs, a broken toe, and a concussion. After surgery, she recovered remarkably well and quickly, but it became obvious that she could no longer return to her home or live alone.
Thus, a third aging parent moved into the Goods' home. She would be there seven years until her death.
The reality of caregiving
The Caregivers gives an honest, detailed and, at times, painful account of those years caring for parents at their end of life.
The book chronicles the selling of a much-loved family home and the process of dismantling lifelong collections of books, tools, family heirlooms, beloved dolls, pictures, knick-knacks, and family china. The decisions of what to save and what to give away or get rid of proved heartbreaking at times.
The Goods learned a truth that all caregivers and aging people come to realize - the majority of the things you collect over a lifetime are important only to you. You may have treasured memories about the items, but those feelings are unlikely to be shared by your children or grandchildren - a harsh and difficult reality.
The disruption and transitions can cause considerable friction in a family. Some can be more concerned about an inheritance than about the well-being of their relatives.
The Goods found that even their decision to care for their parents at home in their final years instead of putting them in an assisted living facility or nursing home became controversial.
"My wife and I were variously loved, condemned, ostracized, praised, hated, admired, despised, pitied, and shunned by members of our community," Victor wrote in the book's preface. "One thing we never saw coming was the division that formed between family and friends as Julie and I did our best and sacrificed the most to care for our parents."
Victor said that he still finds himself second-guessing some of the decisions they made. Their intense personal care certainly extended their parents' lives - but they have been criticized even for that effort, with some saying that it might have been better if their parents, with their quality of life declining, had died sooner.
He said that their quality of life was a constant concern throughout this journey and that he knew his parents were pain free and still experiencing real moments of joy, happiness, and love daily.
"I was with them every day," Victor said. "We got to experience the laughs, the smiles, and the hugs."
He also said that for a variety of reasons - physical, financial, emotional, and psychological - many families facing similar issues about elder care will make decisions quite different from the ones that he and Julie made for their parents.
The choices will vary from family to family, and there is no right or wrong way to do things, he said - and that principle must be recognized and respected.
Victor remembers his father saying - as many, many others have - "When I can't wipe my own ass, I don't want to live any longer." Yet, when things got to that point with all three of their parents, they made different decisions. Aging forces families to confront some very difficult situations.
By discussing these concerns freely in his book, Victor hopes that the conversation will move others to talk openly about these important issues - one of his reasons for writing the book.
His conclusion about his and Julie's decision to care personally for their parents until the end remains solid.
"Most importantly, though, we were loved and appreciated by my parents," he said.
Lessons learned
The Goods said they learned a number of important lessons during their caregiving years. On their website, they have published "Advice for Caregivers," which they intend as a useful, practical, and extensive list that touches on topics ranging from how to communicate when someone has dementia to how to use Hoyer lifts to evaluating brands of adult diapers.
Finding qualified medical help was key. They said they were very pleased with the help they got from Brattleboro Area Hospice and the Hallowell Singers, from help who came to their home to assist with their parents' care, from the people and programs at Brattleboro Memorial Hospital, and in particular from Dr. Tony Blofson of Maplewood Family Practice, who shared his extensive experience in dealing with dementia in his own family.
Victor said that music had been vital to his parents, who enjoyed playing, singing, and dancing.
At one point, Blofson wrote a prescription that read "1 song - 3 times per day - voice and guitar." The doctor handed it to Leo and told him, "This is the best thing you can do for yourself and for your wife."
When playing guitar, dancing, and singing became impossible, the Goods created a daily "evening balloon time," where from 4:30 to 6:30 their parents would sit together in a circle, listen to music, hold hands and move to the beat, while getting some exercise by bouncing a balloon around the room.
Music often elicited a response, including even singing, when nothing else seemed to work.
"Music was shockingly, amazingly effective," Victor said. "It seems to awaken the brain when they are trapped in there."
Movement and walking were vital. Doctors told the Goods that even something as simple as helping a parent walk around their apartment a few times a day would have a dramatic, positive effect.
The Goods said they saw those benefits for themselves, noting how it helped heal and prevent the recurrence of bed and foot sores.
One important lesson they learned from Blofson was how he treated dementia patients with dignity, including them in conversations about treatment, talking to them directly, picking up on their nonverbal cues. The Goods incorporated those lessons in their daily interactions with their parents, talking to them, giving warm, meaningful hugs and "I love you"s several times a day.
And one vital lesson the Goods learned that they've been applying in their own lives is to make plans for the final stages of aging before it happens.
• Downsize. Prepare your home for declining physical abilities. Simplify and minimize your needs, home, and possessions. Get rid of clutter, and recognize that things you may value are unlikely to be as valued by others. Don't leave it to others to decide what to do with your possessions.
• Give away treasured or valuable items to friends and family members who will appreciate them. Often, doing so will be far more personally satisfying than leaving them in a will. If accumulating possessions is one of the pleasures of one's early life, make giving possessions away one of the pleasures of the end-of-life years.
Aftermath
With the death of Ma Schwan in 2022, Victor said that he and his wife went through an empty nest period. So much focus had been on the parents, he said that he hardly recognized himself in the mirror.
"It's a true shock to the system," he said.
Round-the-clock care for their parents over eight years had taken a toll.
"You're so involved in the day-to-day routine," Victor said, "that you don't have time to socialize. You don't realize how much it ages you. Since they've passed, we've spent a lot of time traveling around the country and reconnecting with friends and family."
They also have begun taking their own advice and downsizing and planning for their later years.
Victor concluded that all these issues around aging "are a discussion people need to be having."
The recalibration of their family also gave them a renewed sense of purpose.
"We were acutely aware that we've got to finish our lives," Victor said. "It became very clear to us that you have to live your life as good as can while you're here."
For photos and videos, extensive information, and resources on aging, and to order the book ($48.99, hardcover or $9.99, e-book), visit The-Caregivers.com.
This News item by Robert F. Smith was written for The Commons.