OUR JOURNEY

Early Signs

I held my annual holiday sale early this past December. I have been doing this with a group of women artists for well over 30 years. Only three of us original artists still participate in the sale. It actually started as a spring sale that we called a Tea Party. The first art sellers included potters, painters and me, a drawer and picture book creator.

Soon we decided that the holidays would be a better time to sell our work so we host a sale on the first Sunday after Thanksgiving. As I packed up my books, doodles and art this year, I thought about how much I miss Barry’s help in getting ready for the sale. He used to handle the whole thing for me. He packed up all the supplies, got cash, organized the posters and ordered the books. The day of the sale, he packed up the car, then unpacked it at the venue. Together we would set everything up. Then once all was ready to go, he would sit down, pull out the Sunday paper and relax until the doors opened. Then my job started — talking to everyone and signing books. Barry handled all the money. We made a good team. As I packed up for this year’s sale, a memory popped into my mind out of the blue. The memory, I now realize, was about an early sign of Barry’s frontotemporal dementia (FTD).

We were living in Kenwood, renting a very expensive carriage house with a tuck-under garage. I knew we were in financial trouble, but I had no idea yet how serious it was. Barry had been acting strangely — the car had dents everywhere, and he spent much of his day waiting for the mail to arrive. It was also during this time that I noticed he was eating two or more breakfasts each day, usually just yogurt with honey and granola. When I asked why he was eating again, he would just say that he was hungry. An early sign of FTD.

I remembered that on day of the sale that year, he packed up the car early in the morning. I remember being irritated with him because he didn’t seem as organized as usual. I went to the venue before him to nab a parking place near the door. He pulled out a bit after me and left the garage door open so anyone could just walk into our place at any time. We lived on a busy street with lots of walkers heading to the lake. This was not good. When we arrived back home at 6:30 p.m., I was in a panic when I saw the garage door open. I flew out of the car, praying our computers were still there, and our bikes!  The odd thing was that Barry showed no emotion at all. It turned out that everything was fine inside and the bikes were there in the garage. But finding the garage door open would have sent Barry into a panic years before, but not now. Who is this person? I also remember thinking that it was odd that Barry just went inside and turned on the Vikings game on television, forgetting even to help unload the car — until I yelled at him. It would take another couple of years for me to finally take action and figure out what was going on. This behavior was new and I knew then that something was not right with my husband! I also thought to myself that this would be the last time he would ever help me with my sale. I just could not depend on him anymore.

There was one more odd thing that I remembered as I thought about the garage being open all day. It was springtime and we were still living in the rented place in Kenwood, although we were broke and struggling to keep up with rent. Barry could not get a job, and he didn’t seem to care. I was working nonstop, becoming a bitter wife. One day while working up in an extra bedroom that served as my studio, I heard the garage door open. I peeked out and saw Barry talking to a couple. I figured he was just checking the mail and people walking to the lake stopped by for directions. I went back to drawing. After a while, I heard the garage door close again.

bikeWhere’s my bike?

The next day when I wanted to go for a bike ride, my beloved mountain bike was gone. It was the bike that I rode for hours on trails up at our old cabin. I ran upstairs to see if Barry knew anything about it. Again with no emotion at all, he said maybe some teenagers took it out of the garage. I went down to look again. I noticed my bike lock that was usually wrapped around the bike handlebars was laying on the garage floor. A kid stealing the bike would have to know the lock combination. And we stored beer in the garage. Wouldn’t a kid take that too? Plus I was really careful about keeping the garage door closed now. I knew right then and there that yesterday Barry was selling my bike to that couple. I knew it for certain.

At the time, Barry was slowly selling everything of any value on Craigslist, but he always asked me first. I tried to check his computer to see if he had posted the bike, but I was locked out and didn’t know his password. I confronted him countless times about that bike; in fact, I houndedhim about it all summer. Whenever I was mad at him, which was all the time, I brought up the bike. I felt a little like Michael Corleone in the movie “Godfather: Part II” during the scene in Cuba on New Year’s Eve. Michael says, “I know it was you Fredo. You broke my heart. You broke my heart!” No matter how dramatic I became, Barry never showed any emotion — and he also never denied it. He just refused to answer me. I loved that bike, but looking back, it was just a bike and we did need the money. I spent way too much time being angry about that bike.

Maybe my time would have been better spent trying to figure out why Barry was acting so odd. I realize now that it was the FTD starting to take hold of his emotions. This selfishness and lack of emotion would get a lot worse — a whole lot worse.

For anyone on this same journey, know that these early signs, such as hunger, eating the same thing continuously, lack of emotion, selfishness, lack of a conscious and disorganization, are all typical of FTD.

Posted in Our Journey Tagged with: , , , , , ,
7 comments on “OUR JOURNEY
  1. Karen Bauer says:

    Nancy, this has surely been a journey for you. In describing how your husband lost emotions, it seems it brought them out more in you. Anger, frustration, confusion as to why this was happening. I can’t imagine the heck you’ve been through, but your descriptions are disturbing, and sad. What a rollercoaster you’ve been riding! Your sharing of this makes any reader more aware of the condition, hoping not too many recognize it in a loved one. You’re becoming a very independent woman. Wishing you the best, and none of what I said is meant to be a criticism, just observation. Happy New Year! Karen

  2. And yet, and yet we have to live our lives forward. It’s so how hard to know if knowing more would have changed anything. Keep living forward.

  3. HOW FRUSTRATING to have your anguish have NO effect on him so you must have imagined he was just being pig-headed for NO reason! Argh. AM a little worried now when I am hungry though. Hope you will visit me in Red Wing soon. Happy New Year Nancy

  4. Sheila burns says:

    My dad gradually became demented but he was always selfish so we
    didn’t recognize what was going on. A family friend who is a doctor hadn’t seen him for several years. She knew immediately. You might have realized something was wrong, but you wouldn’t have been able to guess the cause. We all look back and see things we would have done differently.

  5. Kathy Klis says:

    Thank you for your difficult, emotional and educational postings. Your love for Barry is beautiful.

  6. claudine coughlin says:

    Hi Nancy, So sorry that it took so long to put all the pieces of Barry’s behavior together and that you had to suffer with all the loses. I hope you have a very successful Happy New Year. Love, Claudine

  7. Joan Mooney says:

    Thinking of you and hoping 2016 is kind and rewarding to you, Barry and your lovely family. You are deeply admired for your understanding and perseverance when the dark gets darker, you forge on and still allow happiness to grow in your heart which is evident in your work.
    You are remarkable!
    xoxo,
    Joan

Leave a Reply

Your email address will not be published. Required fields are marked *

*