Passions and hobbies are often things that disappear fast in frontotemporal degeneration. People with FTD show an alarming lack of enjoyment or focus on things that were previously their passion. Even lifelong passions and pursuits. In my husband’s case, his deep love of ‘the Beautiful Game’ became less and less important as time went by. It was as if he had completely forgotten how much he loved it. Despite the fact that he had been a huge fan practically since he could kick a ball. Not only a fan, but a coach and mentor. Even made his living from it for a while.
Football, or soccer as it is known in the US, is a British Institution. Originally the pursuit of the working classes at the end of a hard work week, football has developed into big business. As in most sports nowadays, players are bought and sold for millions of pounds, dollars, euros, whatever. But increasingly, the working class are often excluded from games due to the price of entry even for the least expensive seats.
When football was first played in England in the early nineteenth century, the spectators stood on terraces. No-one sat down to watch. Part of the thrill was to stand in a large crowd of your ‘tribe’, cheering your team on and verbally abusing the opposing team or the referee. The tribal loyalty has started fights, ended marriages and caused lifetime family feuds. Such loyalty to your team is a cultural phenomenon to soccer. The leaning to one team or another is historically driven by community and local ties. Teams don’t move cities or change their name. They are rooted in communities where their fans live and work. Once a United/City/F.C./whatever fan, always a fan. You don’t change teams whatever happens, win or lose. This can make for some very ecstatic or deeply depressing days! I offer this explanation to illustrate the seriousness of the passion.
Up until the middle stages of his FTD, my husband’s loyalty to his team, Manchester United, remained steadfast. After that, the focus required to even watch a game on TV was lost. He would get up many times during the game and wander off around the house “pottering” then come back and sit down. He would look surprised as if he had just realized we were watching the game. He would only make a comment on some bad or good element of play by echoing our son’s comments. It was as if he was incapable of independent opinion any more. He could not follow the run of the game. This was very distressing for us as football had always been a common love between everyone in our family. We were used to him yelling and shouting and joining in the excitement.
The passion extended into his working life. He coached football in England and in the U.S. He was thrilled he could be paid for doing the thing that he loved the most. His passion and love of the game was evident in every aspect of his life. It got him into trouble more than once.
However, once he no longer understood the realities of everyday life, his memory of even the most deeply rooted loves and passions slowly disappeared. This was incredible to those of us in his family who knew how much it meant to him. It was almost unthinkable that he could forget that. He was even oblivious to the familiar pictures of his hero, George Best, that we placed in his room at the first Care Home he went to. We were astonished that he paid no attention to the things he loved. Including us. That is one of the most hurtful things about FTD or any other kind of dementia. It was as if he knew we were people that cared about him and were kind, but he was not sure who. Actually not even sure how to ‘be’ around us. At any age, I am sure this kind of non-recognition is hurtful, but in your 56-year old husband and father, it is particularly distressing.
We would pore over albums of family photos. We would bring the grandchildren to play in the garden. We would flip over the pages of a book about Manchester United that he had always loved. We would talk about familiar things & people. The strongest reaction we got was a sort of benign smile and nod. There seemed to be a spark of recognition for a while, but this disappeared too after a couple of months. With no insight into the deterioration, this flat affect seemed cruel, passionless. Like he didn’t care. About anything. He had been a vociferous and passionate man. With extremes of emotion – love, hate, anger, pleasure and joy. Such cruel and blatant stealing of the soul is a hallmark of FTD.
Passion was a thing of the past. Passion was dulled by the thief. Passion was killed by the blindfold of FTD.
Love however is made of stronger stuff…….it cannot be killed by the bastard disease.