Frontotemporal dementia support

FTD Presentation with Motor Neurone Disease

Tony by his wife Ann Freer

Tony and I married in October 1961. He was 26 and I was 19. He was intelligent, ambitious and worked hard, but was also a very practical man and much-loved and admired by our families. We had a happy marriage and were blessed with three children.

Until 1985, you would describe Tony as a successful businessman and a devoted family man. He was happy in his work, happy at home and lived life to the full. His job took him to many countries, particularly the Far East, and he loved the travelling, experiencing new cultures and the socialising that went with it. At home, he did all the decorating and repairs needed to the highest standards of a person who had studied these trades. He could also service and repair our cars as needed and was always involved in some project or other. Tony was full of energy; he never did anything slowly or quietly and was always cheerful. Everyone liked him.

In 1985, his employers closed their UK office. Tony was made redundant, but first had to close down operations which took six months. Although devastated, he managed this professionally and our children were not aware of the circumstances until he finished work. Incredibly, he was unable to get another job; but he was 50 and too often in those days, solid experience and ability in the older workforce were not valued and respected. He continued his profession for another year on a freelance basis but it was clear that times were tough and this finished in late 1986.

In 1987, he decided to do an evening course in book-keeping but it became clear to the family that he was struggling with this. He blamed the tutor when he failed his exam. Tony decided to change track and put his practical skills to good use doing odd jobs for friends and neighbours and getting work by word of mouth. Although he would never admit it, he was a broken man. It was about this time that we all felt he began to change. There was something different about him but we put this down to the strain of the past few years.

In January 1989, Tony had a heart attack and was admitted to hospital. He never accepted that this had happened. It brought to a head many concerns that I had for sometime: he often could not remember the names of certain things (he would say petrol, instead of milk); would use odd, but almost appropriate words (he would say his nose was “all wettyâ€? rather than that he had a runny nose) and sometimes he couldn’t think of the word he needed at all and would just laugh.

Tony’s difficulties continued and in August 1989 we went to see his GP about his memory loss. We were referred to a specialist centre and had our first appointment there in October 1989. It was to be the first of many. In June 1990, he spent a week there undergoing tests and in the following October we were told that he probably had Alzheimer’s disease and there was nothing that could be done. This diagnosis was changed to probable Pick’s disease. By this time it was clear to everyone, not just his close family, that Tony had severe memory problems. Tony joined a research programme and was always expecting the doctors to `put him right’. We stopped attending when I could no longer cope with him on the buses and trains.

Tony did not accept that he was ill or that he was losing the ability to do safely many of the things he loved. He refused to stop driving and who could blame him? It got him out of the house and it was something he felt he could control. But we also knew that for safety he had to take another driving test and dreaded the inevitable result that he had failed. He was getting more and more moody and in his limited way would argue that he could drive perfectly (we would hide the car keys so that there was no danger of him driving off somewhere).

Without a car, Tony started riding a bike. We liked the fact that this was good exercise but were sometimes anxious about his safety. He would often go to the local market and come back with a bag full of peppers. He’d carefully place them on the table admiring the bright colours.

His desire to travel and get about also led him to the local railway station to see if anyone had thrown away a valid travel card. He was always delighted when he found one and would head off on a train, sometimes coming home late and unable to say where he had been or what he’d done. At other times he would have to be collected from police station miles away in the early hours. On one occasion, he travelled on a bus and refused to get off at the destination. The police were called and Tony was arrested and locked in a cell. He found this very difficult and it was a depressing episode for all of us. The lack of understanding and concern for his condition by those involved was very hurtful. Unfortunately, it remains typical for those suffering with mental illness and brain disease.

Around this time, money became a fixation for Tony. He would go to the bank most days and get a mini-statement from the machine (he could remember his pin number). He would collect these statements as if they had some value in their own right. Several times he withdrew £100 from the building society and it just disappeared.

To try and keep Tony occupied the community psychiatrist arranged for him to do some therapeutic work at the Springboard Industrial Centre. This began in October 1991 and he attended two days a week over six months until they were no longer able to cope with him. He liked the Centre because he got paid a small amount for the carpentry that he did. Unfortunately, as his condition deteriorated, he refused to do the work but still wanted the money!

Over the next year, Tony’s vocabulary and understanding became very limited and he could not communicate with anyone. His close family had the best idea of the needs and wants he tried to express through single words and pointing.

In 1992, I made some initial investigations into Enduring Power of Attorney but we decided as a family that the process seemed long and complicated and we were worried that Tony’s condition had deteriorated beyond the point where his signature would be accepted as proof of knowingly giving Power of Attorney to me. It was not an issue at this stage. Fortunately there were no major financial concerns so I was spared the bureaucracy for a while. In 1994, the consultant wrote to the effect that Tony could no longer manage his own affairs and that I was his representative. This satisfied all the appropriate authorities until 1997 but more of that shortly.

In terms of his condition, it got to the point where Tony was unable to go out unaccompanied. Instead, he and I spent hours in doors every day playing scrabble. The children would also take their turns when back from work, university or school. It was a game the whole family had once enjoyed, but now it was a nonsense, however Tony didn’t notice. By chance, we found that he could still do jigsaws. He could do them quickly and no-one was allowed to help. The challenge was to find enough jigsaws to keep him occupied!

As well as the mental deterioration there were also physical changes in Tony. He changed from a fastidious, well-presented person to someone who was scruffy and unclean. He didn’t like water and didn’t like to be touched and there was no way he was going to let me near him to wash him. Enter our social worker. She arranged for Tony to attend a day centre once a week and the staff bathed and shaved him. He refused to travel there in the ambulance so I would drive him, but he was quite happy to return home in the ambulance. He took no part in the activities at the centre and never socialised. He sat in the same chair and always alone. In fact, if ‘his’ chair was occupied when he arrived he would stand in front of it until it was vacated. His days at the centre were gradually increased until he was attending six days a week. By now he was looking smart again and, on a few occasions, he would be standing by the locked door at the centre and would slip out when someone entered – if they didn’t know him they probably thought he was staff or a visitor. Luckily, he was always found making his way home.

At home I would put Tony to bed at about 8.30pm. I managed to undress him and put on his pyjamas but he would often reappear 10 minutes later; sometimes with his day clothes over his pyjamas or with his clothes on inside out. Tony didn’t sleep well and would come into my bedroom and stand by my bed for several minutes then do the same to our youngest daughter who still lived at home. In the morning, I always found him asleep in his own bed, fully clothed even with his shoes on.

In the final stages of Tony’s living at home he stopped using the toilet and would urinate over the bedside cabinet or the table. He ignored his bowel movement so there was a lot of changing and cleaning to do. This was exacerbated by the fact that he still did not like to be touched.

He developed a taste for very sweet and soft foods. It was as if he could not bother to chew. Most of the time he just used a spoon to eat with and over time just picked food up with his fingers.

By now he was virtually mute. He had called me Darling for many years (I think he had forgotten my name) but this stopped. The last two words he uttered were `OK’ and `alright’. He used these in response to anything that was said to him.

By 1997, it was clear to everyone that Tony had deteriorated to such an extent that he would need to go into permanent care as I could no longer care for him at home. He moved into a specialist residential care home in September. He settled down well and the staff were excellent. We were very lucky. Tony had his own room on the ground floor and could soon find his way to the lounge and dining room where he commandeered an armchair and seat at the dining table as his own and would sit nowhere else.

At this point, I had to revisit the Public Trust Office and apply for Power of Attorney. With his move to residential care Tony’s social security needs were transferred to Guildford. This office would not accept the letter from the hospital and in order to enable his continued support they insisted that I have Court of Protection. This was an extremely painful process, hindered by the lack of coordination by the authorities and the ignorance of some of those involved. It took almost a year to arrange but at the time I felt that it had aged me many more. My main priority was Tony’s well being and security. I had been married to him ‘for better or worse’ for over 30 years yet I was treated as someone ready to profiteer from their loved one’s illness. Until his death, I had to maintain a record system for expenditure and was subject to an annual assessment, for which I then had the pleasure of paying.

Over the years of his illness, Tony had put on a lot of weight and also wore a cross expression on his face. However, the staff all called him the `gentle giant’ and were very fond of him. By now he was completely mute. He also had a great dislike of noise and would cry silently. Tony also had many ischaemic heart attacks while he was in care and eventually became quite unstable in his movements, at first needing two carers to walk with him and then a wheelchair.

The Tony who we loved and admired so much had gone long before he died peacefully in his sleep in the early hours of 7th January 2001. He was just 65 years old.

His brain tissue was donated for medical research. The autopsy revealed that the degeneration of Tony’s brain was not due to Alzheimer’s or Pick’s Disease as was the best guess during his lifetime. In fact, he had Motor Neurone Disease type dementia, an extremely rare condition, especially when no other physical degeneration typical of MND is apparent.

Tony’s death certificate states: cause of death, 1. Pick’s Disease, 2. Ischaemic Heart Disease.

He is still much missed and we talk about him often. He has two granddaughters, too young to remember him but who ask about their Grandad Tony and will light a candle for him at church on Sundays.