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My husband Terry was aged 42 back in 1995 when he mentioned to our G.P. during a routine visit that he was having trouble with his speech. He told her that he couldn’t think of the correct words to say and found himself stuttering during conversations.

A referral was made to a Neurologist and a subsequent brain scan led to a diagnosis of Primary Progressive Aphasia. The Neurologist explained to us that this was a de-generative brain disease affecting the language area of the brain and would result in a gradual loss of ability to speak or understand language. He told us that this was likely to have a slow onset and its duration may be decades.

That was how we understood the diagnosis - Terry would one day not be able to speak or communicate but it was to be a long way into the future. We then went home and explained things to our children then aged 16, 14 and 13.

From then onwards Terry saw the Neurologist at six monthly intervals and was also referred to a speech therapist in the hope that exercises might prolong his abilities to find words. Terry voluntarily retired from his work as a betting-shop manager in 1996 when he knew that he could no longer cope with the demands of the job. He had hoped to be able to do some other type of work but it became clear that this would not be possible - the ability to communicate was proving to be necessary for most things.

Terry had not had a pension scheme with his job and we therefore become dependant on state benefits and disability allowance for our income. I had a small part time job and was receiving invalid care allowance for Terry. Despite this, it never occurred to me that I was a ‘carer’ - things were just as they always had been for our family.

Terry was now at home and spending his time doing jigsaw puzzles - they kept him occupied and he soon became extremely proficient at them. He always took a photograph of each one once completed and took a great pride in showing them to any visitors. He also grew vegetables at an allotment along with my father - our neighbours regularly sampled his produce!

By 1997 Terry was no longer able to speak, using instead a notepad to write down anything he wished to say, using both words and numbers. When he went out alone he carried a small card to let people know that he could not speak but he could understand. We were still determined to live as fully and as happily as we possibly could. This ‘Aphasia’ was not a problem and Terry never once displayed any anger, frustration or depression - he was content and we were happy.

In 1998 Terry was invited to attend a new group for younger people with ‘memory problems’ - a group for people with early onset dementia. Terry attended for one day a week and undoubtedly benefited from the social interaction. It also allowed me to continue to work for that one this until late 1998 upon which time I felt that I needed, and wanted, to be at home for Terry as he was becoming more dependant - it was now becoming more difficult for him to understand things.

Terry had not had an appointment at the hospital for sometime as the original Neurologist had left the job and it was not until two years later, in 2000, before he was seen again. The Y.O.D. group had advised a referral to a Psychiatrist who requested that a brain scan be carried out. An appointment was also arranged with a new Neurologist who explained the latest findings from the scan. Changes in Terry were by now very apparent and we knew that his illness was no longer likely to be limited to the language area of his brain. The Neurologist told us that he suspected Terry may be suffering from something known as Pick’s Disease, although this could not be proved during life.

Pick’s Disease - a dementia - was something to be researched so that we could learn how to cope from now on.

The Psychiatrist, who I had by now learned was a Psycho-Geriatrician, offered Terry day care for two mornings a week at an E.M.I. unit. I was reluctant at first but Terry settled well there and routine was by now what he needed.

As things became more difficult respite care was suggested but we knew that Terry could not adopt to the change of routine - he did not understand and was so used to me. I bathed him, helped him to dress and prepared his meals - if this were to change he would become distressed. He could not accept care from anyone else.

Our family reluctantly faced the decision of long-term care for Terry in the hope that his increasing need for routine would allow him to settle and alleviate later suffering. The only facilities available were EMI hospital wards and a special unit in an EMI nursing home. We placed Terry into the latter but brought him home again after just a few weeks as it proved to be inappropriate for him.

Unfortunately Terry had to be re-admitted once again six weeks later as an emergency as he had developed severe constipation and urinary tract infection and he was near to collapse. Terry was placed into a different room from that previously, which caused him severe distress, and as a result required sedation for a number of days.

Terry spent the next three months at this nursing home where he underwent severe neglect in a most inappropriate environment. Moving him temporarily would have caused him yet more suffering and I could not risk bringing him home again with the increasing possibility of re- admittance.

The doctor in charge of Terry’s care told us that there was nothing else available for him and Social Services could not find an appropriate facility anywhere. We would not accept this and set about finding somewhere suitable for Terry to live. During this time the Picks Disease Support Group Newsletter had advertised a new nursing home in Milton Keynes registered for age 40 years onwards catering for sufferers of any kind of dementia. I telephoned them and we visited shortly afterwards, being very impressed with the owner’s knowledge and experience. A specialist unit such as this would not be cheap and I did not have the financial resources to fund myself so I went back to the doctor to let him know that we had found somewhere for Terry. The response was negative - the money was not available and so the fight began.

Letters were sent to the Health Authority, Social Services, local MP and even the Health Secretary and the Prime Minister. The eventual result was a medical report being sought from another doctor leading to a case conference with Health Authority officials in which an agreement was made for funding to be available from both the Health Authority and Social Services. Terry moved to Bluebirds Nursing Home in Milton Keynes on 25th July 2001 and although he is continuing to deteriorate within his condition, he is receiving excellent care individually tailored to his needs.

It is incredibly difficult for us all to accept that Terry has to live 70 miles away from his family but the knowledge that he is safe and cared for helps us to cope. I cannot be with him everyday as I would like, but visit him twice a week and take each day at a time. I have also moved home and now live together with my mum and one son Kevin. When Terry could no longer live at home our income was taken away leaving my son, who is now 20, to pay the mortgage and bills. My mother has sold her home and paid off the mortgage in order to help us over the financial burden incurred when illness strikes younger people.

I am very fortunate to have a close and supportive family as I can continue to commit myself to Terry as I wish to do and can start to build again in my own time.

Val Bywater

Email: val@pdsg.org.uk

Annual General Meeting - March 6, 2002

Nick Fox, MRC Clinician Scientist Fellow, Institute of Neurology, has kindly agreed to speak. Nick will talk about our different dementias and in particular understanding language problems. There will be lots of other speakers as well. For more information and to place reservations please phone Penelope or Carol. Price £10 including lunch.

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