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Regional Contacts

Have You Seen My Sister? 

Have you seen my sister ?
Her name is Dawn
A rugged, boisterous, "Full of Life" girl
I can't find her anywhere, she's gone.

Her mind is a prison
Where she's locked up tight.
Is she frightened and alone, unable to fight
Her way out of this plight ?

What is this terrible affliction
That's robbed her of so much
That's taken away her ability
To respond to a loving touch.

That condemns her to look with unseeing eyes
At those she knows so well
That will never allow one moment
Of escape from this Hell.

She'll sit in this prison
Till the end of her days
Unable to comprehend
This judgement that's passed upon her
That will not allow her to mend.

What is the reason, how did it happen
Is something she'll never know
And those of us who love her
Stand helplessly and watch it grow.

Perhaps she is already with God
And feels no actual pain.
But this judgement stands, there is no reprieve
I will never find my sister again.

Veronica Lowney

Barry was 29 and I 22 when we married in the Swinging Sixties. He was tall and slim and always on the go. I never knew there was a genetic family illness, and I believe his family did not realise there was one. His father, however, had suffered greatly with Buergers Disease and had lost both legs and some fingers due to amputations by the time I met Barry. Barry's mother had asked the doctors if Buergers Disease could be passed on genetically and the doctors said no. We married in 1964 and had one son born in 1967.

Not long after the birth of our son Barry started on the first of his many obsessions. He was able to buy Welsh books in London, and although he had not been brought up to speak the language by his family, he taught himself, and rapidly acquired a huge library of Welsh books. After that came a craze for naturism. We had moved to Kent and there was a naturist club nearby. Barry joined and could not see why we should not all go to the club, despite my not being very keen. He even booked a naturist holiday, which we went on under protest, although I myself did not join in, having a good excuse owing to the weather.

There then followed a much better obsession. Barry discovered competitions. At first he only won minor prizes like tea towels and aprons, but he soon acquired the skill of writing winning slogans and teasmaids and television sets were soon being delivered to the house. Several holidays abroad (to Istanbul, Greece, South America and New York) followed. He was entering 40 competitions a month in addition to commuting to his job in London.

After moving to a larger house in 1983, Barry seemed much quieter. We did not realise he was slowing down. He used to visit the doctor frequently over various minor things including his feet which developed corns and callouses. His arches in his feet dropped. He soon had to wear specially made shoes.

In the late eighties he was spending more and more time in the bathroom and developed hand washing problems. At the end of 1990 he had the chance of retiring early at 55 because the firm was being sold and were moving, although he was offered alternative employment. He decided to take redundancy and retire. At first, he was still out and about a lot, going round the shops looking for competitions, but after a while he slowed down and decided to do Bingo in the Sun newspaper instead. He collected masses of bingo cards and spent a good part of the day checking them.

This went on for several years. We did not realise how much he was slowing down. By 1997 it was very noticeable Barry had slowed down so much there was something dreadfully wrong with him. He stopped feeding himself at lunchtime or making hot drinks and he had difficulty getting out of a chair. The GP thought it was an under-active thyroid, but despite having two thyroid tests, this wasn't the case. I asked the doctor what he thought it was and he indicated it was something to do with the mind, but was not going to do anything about it until I protested. A neurologist was suggested, but we were told there was a waiting list of 9 months at the local hospital. I was so worried, I said something had to be done and all the doctor could do was write a letter for Barry to see a neurologist privately.

This we did, and he arranged for Barry to be scanned at Kings College Hospital in London. Afterwards the private neurologist put Barry on Sinemet Plus, a drug used to treat Parkinson's Disease. Barry started to improve almost at once, and the occasional incontinence he also suffered from seemed to clear up. I was told to give him one small aspirin a day as well.

By this time Barry had stopped going out and about by himself and waited for me to come home from work to take him out. He liked going out in the car and round the shops at weekends. We took him to Lanzarote every year. He had a holiday in Wales every summer, a week down on the south East Coast and sometimes we went to Wales at Easter as well.

From 1998 onwards incontinence was a problem, but not all the time. I began to make sure he was wearing protection every day. At the end of '98 the stiffness became a severe problem. Barry had to use a small bath seat and then we bought him a chair that lowered him into the bath. He was unable to bath himself and had to be assisted at all times in case he fell. He had a lot of falls due to the Parkinsonism. Sometimes I would manage to catch him and prop him up, thus alleviating a fall. I felt Barry was very lonely. He saw no one except for our son and myself. I asked Social Services if there was somewhere he could go etc. The only place that it was felt suitable for him was the Bromley Branch of Alzheimer’s and he started going one day a week, being collected in a mini bus and brought home again at the end of the afternoon. This was increased to two days a week before very long.

During our holiday in Wales in August 1999 we attended at Manchester Royal Infirmary with Barry's sister and family. His sister was also showing signs of mental deterioration. They were very interested in the brother and sister case and did some tests. It was found they both had the tau gene.

After our holiday in Wales Barry deteriorated further and was sleeping most of the day and all night. The Incontinence Nurse produced some "bags" for him to wear at night and these were very helpful. I had been getting up several times in the night previously to take him to the toilet. He could not be left to his own devices, as he would probably spend the whole night washing his hands.

One night he fell over and hit his head on the door latch which resulted in him being taken to hospital at 4am in case his head needed stitching.I reduced my working hours to have a day off in the week to rest. I also arranged for a nursing agency to send someone in at lunch times when he was not at the Alzheimer’s day centre to make sure he took his tablets. I had great difficulty moving him. I had to lift him off the bed and out of chairs (and out of the car) and he was very heavy. My right arm became very painful as a result of this. A social worker did come to the house and arranged for additional rails to be fitted on the stairs, for a pole beside the bed, and for his chair to be raised 4 inches. I said I needed a hoist, but I never got one. I was told to make him get up himself, but he was unable to.

The last few months of 1999 Barry hardly spoke. He would answer "yes" or "no" but did not initiate conversation with any visitors to the house. He seemed all right up until Christmas, and I took him to the Alzheimer’s Christmas Party. After Christmas he developed a cough, and during the night of 31 December Barry suffered a stroke which we knew nothing about until we came to get him up the following morning. We had to virtually carry him downstairs and we knew he was ill. The emergency doctor was called who prescribed antibiotic, and Barry had a temperature. We found it impossible to get him up and down the stairs so he had to sleep downstairs.

His conditioned worsened. I begged social services to get him into a nursing home, as I could not manage. The GP came and examined him and said he was OK to go to nursing home. On 5 January we set off for the nursing home and he was in there one night. The sister in charge then said he was not well enough to be there and that he needed hospitalisation. He could not swallow. He was taken to Bromley Hospital the following morning. He spent a whole day and night in Accident & Emergency, sleeping throughout. They x-rayed his lungs but said nothing showed up.

The following morning I called in on my way to work and was told everything OK. I was horrified however, to be telephoned by one of the doctors saying that they "thought he was at the end of his dementia" and there was not a lot they could do and "do you want him left here or taken back to the nursing home?" He had only been in hospital 24 hours and they didn't want the bother of him. He was taken back to nursing home where they stated he needed hospital care and that he wouldn't survive at the nursing home. He needed a drip and oxygen. It took all day to get him readmitted to Bromley Hospital where I had to say that I was dissatisfied with his treatment and that he deserved another chance. Two doctors came out and saw us in a private room and apologised.

We had to leave Barry on a trolley but in the morning he was put on a ward and they did do their best for him in the end. Sadly to say he spent 24 nights in hospital, and although rallying slightly in the middle of January and eating liquefied meals, could not overcome the pneumonia and passed away on 30 January 2000 aged 65.

We donated brain tissue to the Maudsley Hospital and now know he suffered from frontal temporal dementia with tau mutations. My brother in law has delved into Barry's paternal family history and discovered that the grandfather and all his children died of brain disease, and it even goes back to the great grandmother. Apparently Manchester Infirmary know of another family who originate from North Wales who have the same genetic problem, and they are trying to discover if the two families are connected. That is why my brother in law has done so much research. 

We do not know whether our children will develop the illness. My son and niece stand a 50% chance. Looking back, I realise I went through all this with not much help. I can remember a young social worker ringing me at work one day and saying she was going to take us off her list as we did not really need help any more (now that he was going to Alzheimer’s). I was absolutely gobsmacked, as by that time Barry was getting increasingly disabled. We only succeeded in getting the full mobility allowance a month before he died.

Nine months on and we miss Barry very much. I am glad we took him on all those holidays. Since May I have visited a medium every six weeks at the Spiritualist Association of Great Britain in Belgrave Square and Barry has come through every time. First he said his illness was hormonal, another time he said his body lacked copper. He says our son is not affected, also that a cure will be found for this illness. He can see into my future and sees me setting up a charitable trust, and he is very pleased I have some holidays planned.

Audrey Williams