In Sickness and in Health

Terri Hetterly, one of our many valued clients, has courageously shared her lived experiences as a caregiver with us in hopes of reaching others who may be in similar circumstances. It's a story of patience, perseverance, and love.

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Our journey began several years ago when George’s dad was diagnosed with frontal temporal dementia (FTD) shortly before he died. We had watched him doing things that frustrated the family without understanding why he was doing them. It was very unpleasant for everyone. Then we learned George’s chances of developing this type of dementia were 50/50. I vowed that if he did get it, I would do everything in my power to prevent him from going through the fear and frustration his dad did.

I began noticing George slowly starting to display similar behaviors and actions to his father’s around 2013 when he was 63 years of age. After reading about FTD, talking to professionals about it, and living through George’s journey, I realize it started much sooner. In George’s 40s, he slowly began to lose interest in things he previously enjoyed like skiing, car racing, and socializing, and he became frustrated more easily and displayed less and less empathy.

By 2014, I was definitely seeing more changes.

They were mainly related to problem solving, planning, organization, and decision making. I tried to talk to George about what I was seeing but he would only get angry because he was unaware of any changes. I later learned people with FTD are incapable of having self-awareness of their disability due to a psychological impairment to the frontal temporal area of their brain. This condition is called Anosognosia.

In 2015, since we both were retired and owned a fifth wheel travel trailer, we decided to travel to the Maritimes, down the Appalachian Chain to Florida, over to Louisiana, and home. Memories of this seven-month trip helped us through the years to come. I was also able to use the upcoming trip as an opportunity to get our wills, power of attorney, and health directives in place – a very important step in planning a meaningful future for George.  

On this trip, George was quite content to do the driving and sightseeing and leave all the planning and decision making up to me. I learned to take things one day at a time and be well organized so I could guide him when something unexpected would come up. I became a master at navigational skills!

In the seventh month of our trip, it was evident we needed to return home.

George’s judgement about distance, directions, and parking spaces was declining. He would start to get nervous if I didn’t stay calm and keep repeating what to expect ahead when he was driving. This was so hard to watch because he used to race cars, had a 1A license, and was an excellent driver.

Thus, began the first and hardest of the four stages of the disease: the early stage or supportive phase.

I refer to it as the hardest stage is because it was a time of trying to digest the diagnosis, determine what team had to be set up to support us through this journey, and devise coping mechanisms while trying to understand what was happening day-to-day. The goal I set at this time was to keep George as comfortable and content as possible, while allowing him to lead as normal a life as possible for as long as possible.

I had to really watch how I phrased things and stay a step ahead so I could prevent him from getting into situations that frustrated or threatened him. I would have the neurologist or psychiatrist introduce the difficult topics to George so he could consider them the bad guys and continue to trust me and look to me for support when he needed it. Physically, he was starting to show balance problems and began to fall when changing direction or bending over. He also began having problems controlling his eye muscles, especially the up and down movement. For the first two years, I was his only caregiver as he was not willing to take supervision or direction from anyone else. As more brain cells began to deteriorate, he became easier to deal with.

He entered the end of life stage in June of 2021. Even though there was a rapid and marked deterioration in his condition, he always knew who everyone was and felt he was only getting a bit forgetful and clumsy. After 71 years of life, 37 years of marriage, 35 years as a parent, and 14 years as a grandfather, he calmly left us on September 10, 2021.

Throughout this time, George and I were on parallel journeys.

His journey was not emotional for him because of his unawareness of having a disability and the support he received. Mine, as his primary caregiver, was a long, lonely journey of losses and new responsibilities. George slowly lost all the things he was able to provide me throughout our marriage – skills he had that I didn’t, like technology; home and vehicle maintenance; and, sharing enjoyable pursuits, such as travelling and socializing. I had to slowly grieve his fading partnership, emotional support, decision making assistance, and conversation that I had come to depend on for so many years.

I have always found I can cope better with any challenges in my life by educating myself about it. I contacted the Alzheimer Society of Saskatchewan after hearing from an acquaintance that she found them very informative and supportive. I immediately felt comfortable and as if I had found someone who understood and genuinely wanted to help.

The Alzheimer Society’s “Just-phoning-to-check-how-you-are-doing,” phone calls reminded me there was always someone available to talk to. Their workshops provided me information about dementia and coping tips such as:

• Connect – don’t correct;
• Blame the disease not them or ourselves;
• Use humor to help both of you deal with difficult situations.

I learned that we, as supporters, have to adjust our behavior and expectations because the person living with dementia is not able to. Other key takeaways I learned from the Alzheimer Society were: to grieve each loss as it happens so it isn’t so overwhelming at the end, and to make sure to take time for and care for yourself as a caregiver.

Being a caregiver provided me with an opportunity to gain insight about myself and hone my skills or develop new ones. I learned to be more patient and less controlling, to ask for help, and to not take things so seriously. My journey taught me that I can learn to take on any task if I take it one step at a time and educate myself about it – yes, even technology! I look forward with anticipation to using these insights and skills in the next phase of my life.

I will never regret sharing this journey with George, our family, and friends.

-Terri Hetterly 

Read Terri’s full story here.