Dementia and a New Normal

I can’t precisely circle a date on a calendar, but my family has been drifting away from what we considered “normal” for many years. My father and his brother were the first generation in an immigrant family to attend college. My mother went to college and was a newspaper reporter until I came along followed by my brother. They did well for themselves over the years as my dad progressed at his job. They built a strong network of friends, put the kids through college, drove nice cars, were active in their synagogue, did charity and community work, and had what anyone would consider terrific lives. There was no disruptive trauma, family drama, substance abuse, or the like. My parents settled into a traditional family where he was the breadwinner and she managed the household while he could still refuse to eat his veggies. Everyone knew their role. My father actively stopped accepting promotions at work which required relocation. Normalcy was established.

Happy Times – I could never get my parents to kiss without them laughing.

After college and first jobs in the frigid north, my wife and I moved back to Atlanta. My brother moved back after graduation as well and as a group, we undertook the task of establishing our own normality. We had a couple boys who act like I remember being while younger, my brother got married and now has a beautiful daughter. We all did family rotations at holidays to make sure events happened and we were together. Atlanta traffic made sure that we could see as much as we wanted to of each other yet not too much.

The pretty normal family

Through all of this, my dad remained the patriarch. He always wanted his children to succeed and prosper so that each generation could improve on the previous one. He loved his grandchildren and his granddaughter was extra special. His greatest triumph was the day he was offered a severance package for a year’s pay and benefits (plus the company car for $1) when his math told him he only needed to work another year before retiring. He played a lot of golf, sold that company car and got my mom a Lexus, and they traveled quite a bit. The only slight hiccup was when he took my brother and I out to lunch one day and told us he’d just gone through successful treatment for prostate cancer. That was both a huge relief and a shock. He’d gone out of his way to hide something so serious from us because of his pride and the idea that the kids didn’t need to know even though we were both well into our 30’s. Somehow it helped him keep an aura of invincibility up which was important to a guy who’d worked out his whole life.

Fitness First: Unfortunately, the gym doesn’t do much for what happened.

That incident was a telling sign of his personality. He became more proud of his accomplishments and a little more macho than he had been. The cars, travel, and leisure activities weren’t byproducts of success anymore. They were the definitions of it.  At family dinners, my brother and I started to notice that there were conversations going on which he seemed to miss out on for just a bit. He’d be focused on eating, then within a few minutes he’d start talking about the topic afresh. It was almost like the discussion needed to seep into his consciousness before he could pick up the ball and run with it. My mother would write it off to some hearing loss he had – which he didn’t want anyone to know about. Still, it felt… off.

The shrine: Grandchildren, Rocky, race cars, and WWII books.

At still other family occasions, he’d start telling stories about points of interest he had. While this is generally pretty normal, it morphed over time. He used to blend current events into the talks and they used to be two-way conversations. The newer context started slipping and the bi-directional exchanges moved more to lectures. The number of topics also shrank. This could get a bit awkward but it was often shrugged off because he may not have seen that person in a while and really wanted to talk with them. When my folks would go on vacation, this seemed to go into overdrive. His career was in sales and sales management so he never had an issue talking with people. On cruises my mother would notice him going into his schtick with a  group of people and would be glad he had new sets of ears to chat with. The last couple trips this got to be more of the one-way monologuing we’d seen at times. Instead of drawing people in, it was driving them off. New situations seemed to throw him off more and more which brought out his alpha-dog/invincible patriarch side.

He’d also draw more inward with his own priorities. When he turned 70 and 75, he hosted nice birthday dinners for family and friends. Then when my mom was about to turn 75, we couldn’t get him to focus on having something for her. My wife and I ended up hosting a party at our house and even then he pointed out that he was about to turn 77 which is a lucky number. A couple years earlier he challenged me over the guest list at my oldest son’s bar mitzvah and aggressively asked me if I wanted to run the show here. At the time it seemed ridiculous since it was our occasion and he wasn’t the one writing the check. At the event he was amazed that there were so many people whom he didn’t know. It was like he didn’t consider that we had our own lives and friends to celebrate with. Incidents like these became more and more common. Our definition of normal was starting to change.

Things finally became undeniable last year. My folks went on a European cruise and my mother swore she returned with a different person than she’d embarked with. He ended up driving people away while they were on the ship as he retold the same stories over and over without letting others speak. He focused intently on their passports and money while not allowing them to be locked in the hotel safe. That caused a confrontation with a museum guard who couldn’t allow visitors with closed bags into the exhibits. The more he was out of his comfort zone, the more insecure he got and the more aggressively he acted in response.

Later that year my mother had to have surgery to remove a lump of breast cancer. He seemed to be missing out on why she needed the treatment, just that there was something wrong. When it was time for her to be discharged he needed to pull the car around to pick her up. My aunt and I were very specific that he needed to look for signs leading to the Women’s Center but he kept focusing on what he called “the back of the hospital”. The result was my dad disappearing for about an hour while we waited and he parked the car in “the back of the hospital” rather than driving to the well-marked turnaround with a fountain. He insisted that the nurse was wheeling my mom to the wrong place and actually stepped between me and the wheelchair when I suggested that I take her home while he stopped by the drugstore. (The surgery was successful and she’s doing great.)

This led us to make an appointment with a neurologist which was difficult because my father is insistent that he’s in perfect health and far better off than anyone else his age. While he’s in great shape physically, even the argument that going to the gym doesn’t keep people from getting other ailments wouldn’t get through. He developed a distrust of doctors who might say there was anything wrong with him and took anything they’d say positive as indicative of his overall health. An EKG meant he was good head to toe. We did get him to the initial neurologist meeting and there was an MRI scheduled as well as a follow-up appointment to review it. Getting him to the MRI initially seemed like it would be easy then he stormed into my mother’s bedroom at 4:30AM shouting obscenities and that he wasn’t going. That led me to go over to their house that morning to help talk him into it. He appeared confused, disoriented, and unable to make any points clear to us. Logic wouldn’t work and I’m not sure what finally broke through. He relented and was actually docile and chatty during the procedure.

Unfortunately, the follow-up appointment was a nightmare. He was told he had frontotemporal dementia and possibly some previously-unknown brain trauma. He tried to explain that he was in great shape until the doctor said that this meant he’d become unable to manage his own financial affairs and care. Then my dad got physically aggressive with the doctor and my brother and I had to pull him away – twice. On the way home from the doctor’s office my dad accused my mom of damaging the family and threatened to take it out on her.

The source of the trouble

My brother and I had her move out and the next half year was decidedly NOT normal. He was unable to comprehend what was happening and wasn’t able to take great care of himself. We’d all go out with him and every experience was like déja vu. The same conversations happened over and over with him unable to absorb new information. We eventually got him to another neurologist who did a phenomenal job of explaining what was going on. My father was unable to grasp the concepts even when shown his MRI next to a healthy brain scan. The doctor told us in a side conversation that this was what he expected and that my dad was actually extremely dangerous as a result – especially since he collected firearms.

Fast forwarding, this led us to file for an emergency guardianship and to start taking away the guns and access to money behind his back. We knew that these were pillars of stability for him yet these and the ability to drive were getting increasingly dangerous. Even with our best efforts, this led to him becoming completely unhinged and enough of a threat that we had to have him taken into custody by police so we could get him care. If you ever hear stories about the rants that someone with dementia may let loose and doubt them, let me assure you that it’s possible. Never in my wildest dreams or nightmares did I ever have to be concerned with the man who raised me becoming a possible public menace.

I wrote this for a few reasons. First is that many friends who have voiced concern wondered exactly what’s been happening over the course of the year. The primary reason is as a voice of caution. The second neurologist said that he’d never had to have a conversation like that in his career which started in the early 90’s. My family’s situation has been an extreme one and it took quite a while to truly surface. Anything along the way could have changed the journey and made it easier. The disease turned what were likely his best attributes though his entire life against him which is tragic. What really happened though is that we continually created a new normal without even realizing it. We compensated for and avoided his slippage or were simply powerless to do anything because of the distrust he developed of doctors and his own conviction that staying fit would ward off any signs of aging. In the end though, there’s not a complete understanding of his condition and there’s not a way to slow, stop, or reverse it.

What you can do is to watch for signs such as those I pointed out. Don’t be paranoid but also don’t be so afraid of hurting someone’s feelings that you end up on a path which is headed off of a cliff. It’s great to have pride in yourself and your accomplishments but too much pride can be a terrible thing. Always be accepting of help and always look to give it. If you can’t trust and can’t take the advise of those whom you put faith in then you’re going to end up in a lonely place.