As ours was just a normal family living a simple, Midwest life, I never would have imagined our story would be anything out of the ordinary. But that was before FTD (Frontal Temporal Dementia) came into our lives.
Keith was diagnosed at the age of 52 with Behavior-Variant FTD (BvFTD) in November 2009. Though we had never heard of FTD and knew nothing about it, I now know FTD can affect people as early as their 20’s and people into their 80’s. Keith’s diagnosis came in just slightly under the median age of 55, when the majority of patients are identified. Like many caregivers, I had seen subtle changes over the course of 4 or 5 years that I attributed to empty nesting or midlife changes. Looking back, it was certainly the early symptoms of FTD.
Keith and I grew up on our families’ farms in Iowa, attended the same schools, graduated a year apart, and took our first jobs in the same, small town. After our marriage we moved to the Quad Cities and bought our first house, starting our own lives while remaining close enough to help with our parents’ farms during high-volume harvest times. Things got a little rough for us when in the 80’s Keith was temporarily laid off from his job at Caterpillar. He found work where he could, sometimes juggling 3 jobs at once. He even spent some time as an over-the-road truck driver to help make ends meet. The kids were small, and I juggled working and being there for them.
In 1989 we both got another opportunity to go work for Caterpillar, this time in far away Illinois. Difficult as it was to leave our families, values were instilled in us at an early age that the job was what provided, “so follow the job.”
Our two kids were growing, and we fell into the rhythm of summer softball and baseball teams that kept everyone busy. Keith was always the first one to offer to be a coach, sometimes for both kids at the same time. When our daughter, Kelly, joined marching band in high school, Keith jumped at the chance to help build the props, eventually retrofitting a moving van trailer to haul all the equipment and sets. Once they learned of his truck driving experience he was invited to drive the band semi for the competitions, so you can imagine how we spent our fall weekends. Our son, Ryan, also ended up with the marching band for a couple of years, so we spent those high-school years closely connected with our teens.
After both kids graduated, Keith and I looked forward to planning our empty nest and what we wanted to do after retirement. Those short, 5 years became filled with confusion as I was noticing that Keith was just not “my guy I married.” He was changing, moody, not the fun-loving guy jokester I had always known him to be. Where he had always been focused on family, Keith was distracted. This progressed to him turning into a self-centered guy, uninterested in things he used to enjoy and even people who we had been friends with. Keith became more demanding and impatient, while at the same time, he seemed to ignore me and my needs. More strange goings-on included a couple of minor fender benders, and the time he went fishing for 4 days with no sunscreen, ending up with 2nd degree burns on his feet and lower legs. There were so many uncharacteristic changes I shrugged away, from his tone of voice to his impatience and the occasional aggressive hypersexuality.
It was at my son Ryan’s wedding that our family finally saw Keith’s behavior as symptoms we could no longer ignore. It was a beautiful fall day, with all the family lined up outside for picture-taking. Everyone was chatting and catching up between takes, excited about the wedding, and happy to all be together. Keith was standing beside my dad, who suddenly fainted from a dangerously low sugar level – he has diabetes and had not eaten on schedule as he usually did. Keith watched him go down, didn’t react, didn’t attempt to catch him before he fell, didn’t offer to help him up off the ground. He just kept talking to the family members beside him. Keith disappeared after the reception dinner – gone without a word, he vanished and didn’t come back to the reception. After a time we set out looking for him, and finally found him sitting in the car, wondering why everyone wasn’t leaving. This was my wakeup call that the behaviors I’d noticed over the past few years were adding up to something not normal. I had him make an appointment with his doctor and was fully expecting that Keith’s diabetic meds needed to be checked out, or that there was some other simple explanation for the odd changes.
I went with him to the appointment and told the nurse there’s something going on that I can’t ignore. He has changed from the happy-go-lucky guy to something I can’t describe, but small changes are piling up. I jokingly asked the nurse for every test, including a pregnancy test, to find out what is happening to him. As the doctor entered the exam room Keith had an episode that is hard to describe - he just seemed to half close his eyes and seem to not be really there, just ignoring our conversation, in his own world. That episode was the first planet aligning for us to get the ball rolling on a diagnosis. An MRI was scheduled and reviewed, after which our Doctor said, “I can’t say what is going on for sure, but your brain looks like the brain of an 80-yr old. I have made a referral to a neurologist.”
Our second planetary alignment came with us being sent to a practice 60 miles away to keep us inside our insurance network. This particular practice was larger than any in our town, and the neurologist who saw us had previously worked with two patients who had been diagnosed with FTD. Amazingly, he was able to give us a preliminary diagnosis during our first appointment with him. A PET scan and hours of neuropsych testing confirmed the diagnosis. After sending Keith down the hall to check his gait, and discreetly asking me a few more specific questions, that neurologist told Keith that he thought he had an incurable brain disease, and until they knew more, he couldn’t drive. Keith just looked at him said, “OK,” then turned to me to say, “Ok, let’s go.“
I would later learn from many people in the FTD community, a diagnosis as fast as ours is called a “unicorn.” So many others spend years getting a correct diagnosis, with misdiagnosis and many wrong turns being the norm, not the exception, with this disease.
When Keith and I went to work the next day, I went straight to HR to get the FML paperwork started for both of us. We waited in the cafeteria while our forms were reviewed and our diagnosis confirmed with our doctor. After a while, our HR representative came looking for us, and let me know Corporate HR determined their liability was too great to allow Keith to work in the factory, or anywhere else on their properties. So that was his last day of work.
For the better part of a year, Keith stayed home alone while I went to work. I was comfortable leaving him in the house alone, as I’d not see any dangerous behaviors, and we were in the remodeling process, with our contractor friend coming to the house every weekday. Keith wasn’t home alone, and for the most part was a help to our contractor and his staff, rather than a hinderance. I was grateful that our contractor knew what was going on with Keith and was willing to keep me updated on anything new or worsening in his symptoms.
Eventually, Keith began to wander from the home, and we came to the conclusion that Keith needed more supervision than our contractor friend could handle alone. I found a local Adult Day Care that would take my strong, tall, young husband and help fill his days. An ADA city bus picked him up each morning and brought him home in the afternoon. This worked for a while, until his wandering became more frequent, and more dangerous.
Keith started to wander farther and farther from home, as if he was on a mission when he walked to the gas station across from football stadium at our local college. He would fill up a huge cup from the soda machine, hiding in the bathrooms to drink it. He did this despite having a little bit of money in his pockets for just such a purpose. Somehow, he didn’t find it necessary to pay, perhaps more satisfying to sneak. When I finally found out this was happening, I knew I had to get more help in the home dedicated to keeping an eye on him. To buy some time while I was checking out home help agencies, I made up a flyer and took it to the gas station and the local McDonalds, places I knew he was frequenting. A few days later, Keith went to McDonalds, and the manager called the police, showing them the flyer I had given them. The young officer who handled the call knew “The Look” of dementia. I found out later when we spoke, his grandfather had mixed dementia and had once driven himself 12 hours away in another state before he was found.
That officer was kind when he explained how he was required to do a home inspection for safety. He explained that APS would be involved if Keith continued to wander. His patience with me and explaining the full impact of APS in your life made it clear, I was one incident away from heartbreak and disaster. I finalized plans for an agency helper to come the next morning so I could go to work and leave Keith with full supervision until the bus came to pick him up. I was lucky that the day care was full days, allowing me to work and cover the few hours I was not home with either the contractor or a home health worker.
What I thought was a plan only lasted 7 months. Because there were elderly women at the Day Center who were frightened by Keith standing over them with that mad stare, they asked me to find another place for him. With some luck, I located a memory care facility that also had a day program. As my work was 49 miles from home, dropping Keith at this new facility solved numerous problems - I avoided the issue of sporadic no-show companions, and longer hours were possible, allowing me to even let Keith stay for dinner if he needed or wanted to. This was also a saving grace for me when I had to work any OT (factories must be staffed).
Keith’s disease progressed during those months of care, and the staff at the center could tell the grind was affecting me physically. It was at this time they suggested a week or two of respite, with Keith staying 24/7 at the facility. It seemed to them, Keith would have no problems with it because he had never tried to get out or wander any time during his day care time. Plans were made for a week; I dropped him off Sunday, and on Monday I got a call asking if I would like to transition him to full-time care. The administrator for the facility realized, Keith was currently inhabiting the last open bed for a male, and they suggested I grab it while it was available, rather than going on their waiting list. If I declined, he would still be able to go for day care, but respite wouldn’t be a possibility again until there was an open bed. I called Keith’s siblings and our kids, and everyone was wholeheartedly on board. When I asked him if he liked sleeping there, Keith got a big smile and said, “Yep I like being here more than at home, so can I stay?”
That facility became home for Keith for 5 ½ years, where he was content for the most part. There were, of course, bumps in the road with other residents, usually new residents that didn’t adjust to him, he in his 50’s and they a generation older. He had plenty of Mommas who doted on him and a couple of them thought he was their son, a few who didn’t care for him, and one who would slap him because “she owned the place, and she didn’t like him.” There was another who found him to be her “hunky, young boyfriend” and was very intent on him coming to her room to spend the night. By that time, he didn’t understand what her intentions were, but he let her take him by the hand, guiding him to sit by her in the great room. Staff had their hands full with my Keith. He happily paced the hallways, listening to the iPod they gave him and singing the songs they had downloaded on it. In a crazy FTD twist, the staff discovered that Keith could SING, sounding just like Jonny Cash and Garth Brooks as he sang their songs. Before FTD, it was a running joke that the only way Keith could carry a tune was when he hauled the Marching Band instruments.
I will be forever grateful for the ease it gave me in knowing the staff cared for my husband the way they did, calling him their “Dad” and treating him with such kindness and dignity. He passed away in his sleep, 2 days before his birthday on November 11, 2017. He wasn’t considered end stage when he passed, as he was still walking unaided and eating regular meals. Nonetheless, Keith had already lost most speech and needed assistance with most of his ADLs.
Now that my sweet husband is gone, I’ve thrown myself into the role of Grandma to 3 beautiful granddaughters. I am sad that they will never know their loving grandfather, but I will do my best to teach them about him, and what he meant to each of us. I also have thrown myself into advocacy with FTD CarePartners, a social media-based support group of caregivers who lend support to those on the FTD journey. My passion for advocacy was ignited by meeting Sharon Hall at a conference in 2015. Her drive to spread awareness and remove stigma around FTD lit a fire in me and gave me the drive to be there for those coming behind us. In addition to frequently speaking to first year Med Students about FTD, I coordinate a local, in-person support group and also have a presence as an admin of some of the virtual FTD support groups on Facebook.
I am committed to educating caregivers and the general public with the knowledge I’ve gained during my own journey. I have always heard it takes a village to raise a child, I now say it takes a village of those who know that FTD isn’t a flower delivery service to make it through. We are a village of “Redwoods,” who know how unpredictable, painful, and possibly bizarre caring for a person with FTD can be. Caregivers are no longer alone in their journeys when they find our group, they have the support of those who have lived it.
