Frontotemporal dementia support

Slow frontotemporal dementia

Bob’s story told by his wife Ginty Fay

My husband was a G.P. and had to retire early eight years ago aged fifty-seven. The first sign that there was something wrong was the fact that he could not recognise people he had regular contact with as patients. Also he was finding that he could not “process” the answers to questions that he asked patients. He described it as feeling as if his brain was a computer screen that had “gone blank”. I was very worried about his driving which had become very erratic and careless, one could even say dangerous. He also seemed to get excessively tired – little wonder when you think how hard he was having to battle to keep his brain going to perform the daily tasks of a G.P. let alone normal daily life.

Bob was first diagnosed as having possible early Alzheimer’s disease, but as his performance on testing actually improved over time the diagnosis was withdrawn. We were left in a no-man’s land of no diagnosis. No interest was taken by the specialist in trying to find out what was wrong.

One of our most worrying times was the financial implications of withdrawing the initial diagnosis followed by a lack of commitment to finding the true diagnosis. All our financial provision and government benefits were in total jeopardy and the worrying harassment continued for years. Once branded as a possible fraud you never shake off the label. However having made our own private arrangements with the help of our very concerned G.P, we finally saw a consultant at a specialist centre where the diagnosis of FTD/Pick’s was made. Our situation was at last taken very seriously.

It was a great help to be reassured that Bob had a genuine illness and that we were not imagining it. We have over the years discovered that Bob’s type of the illness is extremely slow in its progression. He is still, eight years on, able to put on a very good show socially so that it is not readily apparent what major limitations he has. This has proved to be a huge difficulty with many people saying “Oh he looks fine to me” and “doesn’t retirement suit him?” etc. On the other hand when he loses his cool which is very much a feature of the disease and not a feature of his character before, others view him as being a rather difficult, nasty, rude person. They cannot relate it to the disease. The social implications of Pick’s disease/FTD are wide ranging.

We have had great difficulty with neighbours not understanding despite being told of the situation. We have had complaints to the local council about timing and frequency of bonfires and we then had threatening letters from the council. With FTD you don’t connect any problem with the neighbours hanging up her washing and you in clear view choosing that moment to light your bonfire.

When I was at particularly low ebb I was confiding in a close friends and their response was to try and help us by giving Bob some counselling (similar to marriage guidance I think). And I really thought they understood the disease. Some people have actually said that Bob looks better now than he used to – I wonder if this may be because he has a full time carer who is constantly trying to be two jumps ahead whilst walking on eggshells and find fulfilling things for him to do as well as keeping the environment around him as stable as possible!

There is the ever present problem of how to pass the time. We live four miles from our nearest town and not being able to drive means that Bob is very dependent on me for getting about. We go to evening classes together to learn weaving and that is a huge source of enjoyment for Bob at home too. He does gardening in the summer, we have a very “Pick’s garden” as a keen gardening friend once says to me. Six foot plants in the front of the border and six inch plants at the back struggling for light. As soon as something is beginning to be established it is rooted up and moved somewhere else. Fortunately the only thing I care about is that Bob spends hours of time and pleasure in the garden. Reading was a huge help but unfortunately novels have to have simple plots with few characters now – library books are frequently put aside after a few chapters these days.

One of the hardest things is the affect that the disease has on our children. We have four children who were 12, 14, 17 and 18 when Bob went off sick. So teenage years and now young adulthood have encompassed friends, boyfriends, wives etc. having to become acquainted with, and having the ability to cope with sudden outbursts, the inappropriate comments or the misunderstood threads of conversation. I must admit that young people never fail to amaze me with their willingness to try to understand – it puts our long term medical friends, in particular, to utter shame.

Bob also has a tendency to withdraw emotionally when there are too many threads to the conversation. This gives the impression of a lack of interest which when you have previously been a father who has taken 100% interest can be very distressing.

One of our children in particular was very badly affected and at the age of sixteen was diagnosed with anorexia. This was thought by the eating specialist to be a direct result of the changes taking place in her father. It was heartbreaking when it was advised that she could be helped by becoming a weekly boarder in her school which was just down the road.

During the eight years we have had to fight for support. Life has been a real battle and everything we have in place is only there because I have fought for it. This includes regular contact with a CPN or a carer support worker, a social worker (only as recently as nine months ago did I realize we should have one). Two days per week are spent in the woodwork department or the mental health day centre and now after a recent crisis Bob has two separate weeks respite per year. There is absolutely no provision for this in our area so we have to travel to the other end of the country and the funding for it is the latest fight that I am in the middle of now.

During these eight years alongside this, mother developed AD; she needed huge support while trying to live independently 4 miles away and is now in full time care. My physically disabled, unmarried brother’s condition deteriorated before he finally died tragically 4 years ago. A huge amount of time had to be spent winding up his affairs. Naturally of course there is also the continuing hurly burly of 4 teenagers growing into adulthood.

The stresses are manifold and you need to access every possible support available (and kick and scream until somebody hears you!)