Ruth's Story

A Journey Through Dementia

Dementia is an insidious malady that robs people of most of their mental faculties, personality and health. So it is with writer Bob McGinn's wife Ruth.

By Bob McGinn May 17, 2024 Published in the May-June 2024 issue of Sarasota Magazine

Dementia arrives quietly. Maybe it’s a misplaced word, or an instance of what people call “brain fog” or a “senior moment.” At first, it’s no big deal. Most people ignore it. Then, as time passes, the momentary lapses increase in number and duration, and family and friends start to notice—even if the individual does not. 

Dementia is an insidious malady that robs people of most of their mental faculties, their personality and their health. So it is with my 77-year-old wife Ruth. She worked as a speech therapist, earned two master’s degrees and became an assistant professor of public speaking at several colleges. After she and I retired, we moved to Florida and began an idyllic life in Venice. Now she is in the final stages of dementia—at home, in hospice care, with limited verbal ability. 

After a few years here, Ruth’s symptoms began to develop. Friends and acquaintances never noticed—or if they did, they shrugged it off as typical senior behavior. But I noticed, and became concerned. We were both very familiar with dementia because Ruth’s father developed vascular dementia from a botched heart operation. Just a couple of months after the procedure, he was admitted to a long-term care facility and lived for another five years. Ruth’s mother also developed dementia, probably Alzheimer’s, and also passed away in a long-term care facility after a couple of years. Both were in their 80s when they died. 

Dementia ran rampant in my family, as well. My father’s sister Liz was the first in the family to exhibit symptoms. One day, when I was around 30 years old, she put a frozen dinner in the gas stove without removing the packaging. Sensing the potential danger, my parents asked me to move her to a facility. Her physician gave me a single high-dose Valium and asked me to drug her before the move. I watched my mother cry as Liz was taken away. 

 My uncle Jim was the next to go. He was so creative that he escaped from his facility while wearing a hospital gown and hopped on a bus to Boston, about 50 miles away. 

My father was the last to exhibit symptoms. His case was different because he had a spouse; the others didn’t. He made life hell for my mother by chasing her out of bed and denying he knew her. We tried keeping him at home, but it was futile. My brothers helped shoulder the responsibility of caring for him and found a place for him to live while I managed the family property. Dad had the unique accomplishment of being the only resident to leave the locked facility in which he ended up. He memorized the key code and the staff found him in the parking lot. After several other placements, he passed away from pneumonia—one of the most common causes of death for those with dementia. 

Given all that family history, when Ruth began to exhibit symptoms, I knew I needed help, and I spent four years looking for resources for her. Sarasota has an older population and an abundance of treatment and support options for people with dementia, but that didn’t make the process easy. Some resources are excellent; some are moderately helpful; some are a waste of time. 

I started with Google. After some searching, it seemed that the symptoms Ruth was exhibiting would be classified as mild cognitive impairment, or MCI. I noticed an ad for a seminar being held at Sarasota Memorial Hospital and led by noted neurologist Dr. Alan Grindal, who would be discussing MCI and dementia. 

Dementia is an umbrella term for a number of behaviors that involve a loss of functions, including Alzheimer’s, vascular dementia, Lewy body, Parkinson’s, frontotemporal disorders, white matter disease or any of these combined with brain atrophy. The condition can be brought on by proteins in the brain or plaque that grows and blocks neurons from completing messages. Vascular diseases and drugs can also be a factor, and genetics play a role, too. 

 Ruth was reluctant to go to the seminar. I think she sensed the implications. But we did attend, and it was a thorough and enlightening presentation. The major point that Grindal made was that, for many people, MCI is simply a way station along the road to dementia. According to Grindal, mild difficulties might go on for several years, and then the person might decline rapidly. Grindal also stated that the type and source of dementia—except for Lewy body dementia and Parkinson’s—cannot be positively identified until an autopsy is done. It wasn’t the most uplifting seminar, but we needed to hear the truth. 

Hoping to learn more, I turned to Dr. Miguel Rivera, a Sarasota physician who describes himself as the “dementia doc.” He explained that there are three main challenges that people face when living with dementia. The first is cognition, which includes memory struggles, poor driving and difficulty solving word problems. Second are activities of daily life, like going to the grocery store and making decisions. The third is behavior, which can be disrupted by disorders that cause disinhibited behavior like loud speech, cursing and aggression. Dementia occurs when one’s symptoms become severe enough that the individual’s ability to function is severely diminished.  

Ruth as a new mom in 1976
Ruth as a new mom in 1976

After Grindal’s lecture, I learned about memory screenings being held in Venice. To ease Ruth’s wariness, I told her we should both take the test to establish a baseline, and she agreed. 

The test is called the Montreal Cognitive Assessment, or MoCA. It consisted of connecting dots, repeating words, identifying pictures of animals, naming the day, month and year, and more. It measures one’s short-term memory, visuospatial skills, executive functions, attention span and orientation to time and place through a mix of written and oral tests. A score of 30 is perfect; anything below 26 is considered evidence of MCI. I scored a 26. Ruth scored a 22. 

That prompted the test administrator to refer Ruth to SMH’s Memory Disorder Clinic. This was before the beginning of the Covid-19 pandemic, and we were still told to call from the parking lot before entering. That, plus the somber attitude of the staff, gave me a sense of foreboding. First, Ruth was asked to take another MoCA. This time, she scored a 10. 

Over the next month, Ruth underwent blood tests, was evaluated by a psychologist and had an MRI performed. The MRI indicated significant damage to the white matter in her brain caused by restricted blood flow to the area, a condition known as white matter disease. 

The hospital’s team came back with several recommendations. Ruth needed to begin taking a cholinesterase inhibitor to block the breakdown of a neurotransmitter known as acetylcholine, which manages brain functions like attention, learning and memory. The team also suggested an exercise program, eating healthier and engaging in more stimulating activities. 

At first, the recommendations seemed overwhelming. Ruth hadn’t exercised regularly since high school, so we began taking long walks around our neighborhood. She used to do mental games, like crossword puzzles, but had pretty much stopped reading because it became too difficult for her. I was told to keep Ruth away from the stove, so I became the family chef. We were already following the Mediterranean diet, so eating healthier did not present a major challenge. What was difficult was convincing her to stop driving. 

I began to investigate assisted living facilities, because I felt that, at some point, one or both of us would need one. Essentially, there are two types of facilities: those based on religion and those owned by corporations. Some require entry fees; at others, you pay month to month. While both types of facilities provide similar services, in one that operates on entry fees, you are usually guaranteed residence for life—meaning you won’t be asked to leave if your savings are exhausted. 

But entry fees can be steep. At one facility in Venice where Ruth and I began living in 2019, the entrance fee was $400,000. Add $5,000 a month for room and board to reside in the independent living portion of the facility and it’s easy to understand how one might run out of money quickly. 

Before moving in, we visited every option within 20 miles. Newer facilities tend to be more resort-like, with amenities such as swimming pools, movie theaters, good dining options with alcohol service, exercise rooms and more. One big advantage of the newer facilities is the education level of the staff, which is generally higher. Many staff members are trained in dementia care. 

However, budget constraints and the profit motive may negate those advantages. According to recent reporting by Jordan Rau of KFF Health News, a national newsroom that reports on health issues, while roughly 850,000 Americans live in assisted living facilities, the high cost leaves many more shut out. Rau found that annual profits of 20 percent are standard in the industry, and that some facilities charge residents for services like blood pressure checks and injections in addition to the monthly fees. According to Rau, the nationwide median cost of assisted living is $54,000 a year. 

Ruth and I ended up staying at our facility for just eight months because of the cost, and then we moved into our own home. But, a few years later, Ruth began wandering. One day, I found her three houses away, being confronted by a neighbor who did not know her, and she would often walk around the house at night. Because of that, in February 2023, I decided to move her into a memory care facility, but she lasted only 10 days before I decided it wasn’t a good fit. The same thing happened last July, when Ruth moved into another facility, which she left after just two months.

Amid all this, we began to visit The Living Room, a day care center operated by Senior Friendship Centers. It’s open five days a week from 8 a.m. to 3 p.m., with no set time for when you are supposed to arrive or leave. Ruth was apprehensive about attending at first, but soon made friends among the 15-20 clients who are there on a typical day. 

There are usually three aides on hand who help clients make crafts, exercise, celebrate birthdays, listen to music, engage with service animals and more. Lunch and snacks are also provided. There is a cost, but at $16 per hour (at that time), it was quite reasonable. Ruth attended for 14 months, spending between 18 and 20 hours there each week. As soon as I drove close to the facility, she would balk at going in, but once inside, when an aide would call her name and hug her, she would smile and join a small group of other women. She made friends easily, and other clients liked her, as well. Upon leaving, she would hug everyone in sight. 

Ruth at age 3
Ruth at age 3

It was sad for me to see this woman, who earned two master’s degrees, making a small craft project like a first grader. But Ruth was proud of what she accomplished, and that meant the world to her—and to me. (Her works are now on display in our living room.) Most dementia experts agree that socialization and activities are crucial, and The Living Room provided her with a wonderful way to have both. Unfortunately, after Ruth developed incontinence, she had to leave. 

This has been Ruth’s journey, and it is nearly over. Today, she lives at home with me, with regular visits from a caregiver and a certified nursing assistant. In meeting with men and women who have lost a loved one through dementia, I find there are two recurring regrets: People tell themselves that they should have done something sooner or should have done more. Because of the emotional and physical stress that caregivers experience, many pass before their loved one. Caregiving is no easy task, and it takes a toll. 

Like most caregivers, I imagine, I feel frustrated there are no medical advancements that can delay or reverse Ruth’s condition, and it’s difficult to accept that all I can do is watch her wither away. I am grateful for the 50 years we have had together, and the support she has given me throughout our life together is immeasurable.  

This experience has given me a lot of time to reflect on what was, what is and what will be, and to make the most of the limited time we have. We’re passing through another chapter in the book of life, and for Ruth’s benefit, I have to deal with that. I just wish I knew how much she understands of what we say when we’re near. 

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