OUR JOURNEY – Money for nothing
More early signs
The other day when I purchased a health drink made with acai berry, I remembered a very desperate time for us. Some memories of years ago are so clear, yet today I can walk into a room for something and not remember what it was that I wanted to get. When I think of a doodle idea these days and don’t write it down that minute, the idea is lost somewhere in my poor cluttered brain. Anyway, that acai berry drink spurred detailed memories of events that were unfolding for us just as frontotemporal dementia (FTD) was very quietly beginning to affect Barry.
It was a strange and scary time for us. We were struggling to sell our house and keep afloat. During this time, Barry’s mind was just starting to get a little confused. Our house had been on the market for two years. We had put our savings into updating and remodeling the house, including a new roof and new carpet that we hoped would help the house sell for a whole bunch of money. We planned to buy a smaller place and then everything would be cool. At least that is what Barry kept telling me. But unfortunately, the great recession was knocking at our back door — not buyers! Another year would go by before we finally sold the house, and by then Barry had started to borrow money from people. I found out later that he also was getting quick loans for the cars we owned. I am sorry to say now that he was able to hide most of the problems from me.
Dreams of winning big
One day he came into my studio and said, “They are having tryouts in Minnesota for Who Wants to Be a Millionaire? and I am trying out!” This was so out of character for Barry because he never liked being in the spotlight. He did watch the show religiously every night, which I remember being slightly irritated about. FTD was just starting to play with his mind by then and trying out seemed perfectly normal to him. I was very skeptical when he said, “I know I will makeit on to the show because my name is McCool. They will just love my name!”
So he practiced what he would do at the tryouts. He came up with funny quips and come-backs. He stopped working on anything else for a few weeks. He dreamed of winning a million dollars, and it was clear to him that he would win! In reality, Barry was not a dreamer like this. Instead, he was always quite methodical about making decisions. But because of the house situation and how tough things were, I bought into the idea, too — maybe because I have always been the dreamer in the family.
After a few weeks, Barry got up at 3 a.m. on a cold morning, put on layers and layers of winter clothing and headed to the casino where the show tryout were being held. As Barry told me later that cars were lined up for a mile to park. People had been there all night and the line led way out the door as other dreamers stood in the freezing cold, spending that million dollars in their imaginations. It took all day, but Barry finally got his chance to try out for the show. Sadly, he didn’t even make the first cut. He told me they weren’t impressed with his name even though he really tried hard to convey how cool it was — maybe too hard. Thus began the first of many, many disappointments as we headed down the FTD trail of heartbreak!
Back to the acai berry! Barry had stood in line with a very perky, fun young woman who made it to the next round! Barry was really excited about that. As they talked for hours in the cold, she told Barry she was selling a health drink made from the acai berry that was supposed to cure everything! It would make you live longer and feel like a million bucks. This then became Barry’s next big thing! He would sell this health drink alongside his new pal from the show tryouts.
Soon we were hooked on the stuff and feeling like a million bucks! At least in our imaginations! We had joined the ranks of people looking for a way to make a buck in the recession. As I look back now, I understand that this was a pyramid scheme guaranteed to fail. Nevertheless, we held sales meetings at our house with Barry’s new friend from the tryouts. Barry told me that this scheme would solve all our problems as he mapped out what we would do with our first million dollars.
But people we knew weren’t willing to pay the high price for a bottle of the stuff when they could get the miracle acai berry in lots of other health drinks at a fraction of the cost. He tried very hard to make it work. But then things went south, and we couldn’t even afford a bottle for ourselves. He gave up and, thankfully, our house finally sold. In the meantime, I had no idea that he was going to loan places and asking people for money as we packed up the house and held garage sales. I remember one night asking him to clean out drawers as we prepared to move, but instead I found him watching Who Wants to Be a Millionaire? I was extremely irritated, so I pulled out the drawers and brought them to him. He just dumped all the contentsinto a moving box without going through any of it. “Why move junk we don’t need? Go through the stuff,” I yelled at him as I shut off the TV and squashed his dream of being the big winner! I realize now that it was just FTD making an early appearance, indeed it was a preview of what would soon come.
I have no idea what happened to the perky gal whom he met in line. She never made the final cut for the show. I wonder if she is still selling the miracle drink. As I look back, I have to admit that I will never forget the excitement Barry felt as he tried to get us out of the financial hole we were in. I wonder now if that was the last time Barry ever had big dreams, even if they were just the dreams of a guy with FTD.
It does sneak up on you without raising the red flag immediately. I cannot tell you how many times my husband did something foolhardy before I caught on. Now, with the garden variety of dementia, I understand, and regret the anger and misunderstanding I went through, and how I failed to understand and support him. Although I still get frustrated, it falls into place, and fortunately he is good natured and never remembers. It must have been so difficult for you and your family. Take a deep breath, enjoy your family and tranquility when you can. No one else can really understand, but they will love and support you. Thank you for sharing your soul. Christine
Nancy, Again you did a beautiful job telling your story. I hope writing these stories about yours and Barry’s journey on the road to full blown FTD are helpful for you to relive. It sure brings back all of your difficult times. I know that reading these can certainly be helpful to others traveling this journey.
You are blest to have such a great family and precious grandchildren to enjoy and help you along your journey. Know that your friends, that includes me, are here for you anytime you need us. Fondly, Claudine
Thanks again for your heartfelt sharing! It is touching to read and consider your journey. How could you know then?? You couldn’t!! It all gets put in perspective now as you look back at those memories.
So sad and so true. Like a frog being slowly boiled and we’re not aware we’re the frogs along on this crazy ride. When we come to our senses slowly we can’t jump
Out of that boiling water. I do wonder if my mind just slowly accepted the craziness I was experiencing with my husband or if it was just a survival technique.