Woman to Woman

Morning Glory is hosting Woman to Woman again today, and this time the topic is about coping with enduring health problems in our families.

Those who know me, will know that the past year has been dominated by the collapse, illness and sudden death of Geoff. A man who never went near the doctor, except for his marine medicals every year. I could write a lot about that, but I am not going to this time.

Instead, I am going to tell you about my father, and his battle with Diffuse Lewey Body Disease. This is a very rapid form of Alzheimers, and I had never heard of it before Dad was diagnosed. He and Mum used to visit us annually from South Africa, and the week before they were due to come in November 1997, he was diagnosed. He was absolutely determined to come and "see his girls" and so the consultant told him he could go, but that it would be the last trip he would be able to make. Personally, I think he was determined to get Mum to me, so he could be certain that she was looked after. He never did get to go to see my sister in Switzerland, but she came over regularly to see him. We all supported each other.

The saddest thing about the disease, is that he had moments of complete normality and then in a second could be hallucinating. He was convinced that Mum was an imposter, and not the girl he had married. I think at one stage, he was sure that he had been married 4 times. (Memories of different stages of their life together). They had just been here a few weeks when the doctors here told us that he would never be able to fly again, as he was too much of a risk. Mum had spent the entire 12 hour flight wide awake and on the aisle seat in case Dad decided to go for a walk. At 35000ft. She was a wreck when they arrived, and Dad informed us that the plane had crashed into the terminal in the snow and everything was on fire. No no and no. My son looked at me and said...what did you say this disease was?

I deal with all medical dramas by trying to learn as much as I can about the disease, and so I had contacted the Alzheimers society and had spoken to people who knew, and read the leaflets and just about anything published. Before they arrived. I needed to be prepared. Our GP told me I knew more than he did, and would I please do a summary for him. We learned together.

In his moments of lucidity, Dad asked me what the prognosis was, and whether he had hurt anyone. I was reluctant to tell him, but in the end, I did tell him, and gave him the leaflet from the Alzheimers society. He kept it in his pocket for the rest of his life. He had made notes in the margins. I told him he had never hurt anyone, and he asked if he could. I said yes he possibly could, but that I would make sure that never happened. He told me to promise to do whatever I had to do to make sure.

One of the most important decisions we made was to tell everyone. Friends, of course, and especially neighbours. They all helped so much. I used to put notes in his pockets with my name and phone numbers on, and medical instructions, so that he could still go for walks, which he loved. I would track him by phoning friends and asking if he was going left or right as he passed them, and then go and pick him up after a while. I told all the local shops who he was and gave them my number in case he needed me. He ran away at times, and that was difficult. The hallucinations are a huge part of LBD, and I never knew what he was really seeing. He tried to pour water over the tv one night, because he saw the red light and thought it was on fire. Sometimes he did not sleep at all, and so neither could we.

I was "the authority" in his life. Mum was his wife. I could not just be a daughter. I had to be someone he could trust to be in charge. He was used to being an "authority", so when he demanded to see someone important, that was who I became. I learned very fast that there was no point in trying to correct him, or saying that he was imagining things. People with dementia live in a unique world. If he saw wild animals in the road, I didn't say no, Dad, that is just your imagination. Instead I thanked him for telling me, and suggested phoning the zoo. That worked. If I said I would go out and show him no-one was there, he would have flipped out, worrying that I would be attacked. So I had to go into his world instead. Not always easy. Change is the biggest difficulty for dementia patients. Christmas trees were really not a good idea. We found out.

At the same time as we were learning to cope with this horrible illness, I was flying back and forth to South Africa to sell their home, and wind up their affairs, and also making plans to add on to our home to accommodate us all. It was a complicated time. Luckily, my sister could be in Cape Town at the same time as me when the house was sold, and we packed it up together. We decided to put Dad into respite care for 2 weeks, in the April of 1998, and he had only been there a few days when we were told he would never be able to come home, as there was too much risk of him becoming violent.

My Dad was a gentle strong man, who was a chartered civil engineer, and who had a masters degree in town planning. He was a world class athlete in his day and very well respected, and to think that he could harm any of us was dreadful. But I remembered what I had promised him, and so he stayed in the care home until we found him a lovely nursing home a year later. I still remember what he said when we took him in for the first time. He said quietly.... this is a strange place for an engineer to end up. It nearly broke our hearts.

Mum and I visited him daily, and he died a couple of months after their golden wedding anniversary in 2000. Both Mum and I were with him. By then, he didn't know who we were, and yet he was content in his own little world. By the time he died, he was so thin and frail, and nothing like the big strong man I had known to be my father. I am amazed at his strength and determination to make sure Mum was safe and I am sure he made a conscious decision to come to us.

He was an amazing man. My Dad. Today would have been his 84th birthday.