Caring with no treatment or cure

By Pat Boyes
BBC Wear contributor

Donating brains for Alzheimer's

Before Roland, my husband, was diagnosed with Alzheimer's disease in 1995 we had a good life.

He had been the first Euro MEP for County Durham in Brussels and, in 1984, became an MP in Westminster, representing Houghton and Washington.

He was successful and well respected and we had a good family life.

I was a school teacher with 30 years experience and it was a job that I really loved.

We had two sons who were both married and we all had homes in Peterlee, with my brother and his wife living nearby.

As the disease took hold of Roland his personality began to change.

Roland and Pat Boyes

Instead of the dominant, confident, charismatic man I knew he became insecure, angry and very depressed.

I was constantly trying to lift his spirits and would take him out in the car to change his mood.

Once I found him sitting in the lounge looking so miserable. I asked him what he was feeling and he said it was like being in a dark place but the sun was shining.

'That lovely Yorkshire accent was heard no more'

In May 1995 Roland was given the drug Aricept which certainly improved his condition [though he had to stop taking it two years later] and he gradually became more confident and happier with himself.

I tried to make things better for him by taking him away on holidays to Cyprus and Spain where he felt more relaxed. We also went on cruises to Egypt and the Mediterranean.

I knew that the quality of our time together was limited and we had to pack in as many trips as we could.

I also wanted him to enjoy everyday life experiences like riding in the car, going to the town, having a meal in a restaurant.

Roland Boyes in 1992

I knew that all these activities would soon be impossible for Roland to enjoy.

As well as his wife I was now his carer and, as the months went by and the disease took its toll, I also became his nurse.

Not only did the disease erode his personality it also slowly chipped away at his motor skills.

First the talking stopped and that lovely Yorkshire accent was heard no more.

Then his walking steps would falter and he would trip and fall and, after a few weeks, he couldn't walk at all.

'No treatment and no cure'

By now Roland was confined to the house and I bought as many aids as I could afford to make his life easier.

An expensive power-motor wheelchair, which helped to lift him, and a hoist were the two main machines.

I was very determined to keep him here with the family taking care of him rather than send him to a nursing home.

Even in the advanced stages of Alzheimer's disease he knew he was here at home with us, surrounded by a loving family.

Terry Pratchett is highlighting Alzheimer's Research Trust

We had nurses calling weekly to check on Roland's health, and also mine, asking if I needed help. It was good to see them regularly, to chat about problems.

Looking back over those terrible years between 1995 and 2006, at his death, I have a feeling of such sadness that a disease like Alzheimer's can strip away a person's skills until the body can no longer function without help.

I also feel anger that, despite all progress in medical science, we have a disease with no treatment and no cure in 2009.

In the last few weeks of Roland's life the nurses were invaluable and true angels. The doctors came at short notice and the end was peaceful.

It was a relief for me that his suffering was over but such sadness that this wonderful man with amazing gifts had come to the end of his life like this.

I was very proud that we, as a family, had kept him here till the end. We were honoured and privileged to look after this great man who we loved dearly.