Thinking about it, there was something one day, a long time ago. It was a mood change, a relationship change. He wasn’t the same… there was a moving apart. His attitude towards me wasn’t the same. I put it down to age at the time. He started not to finish the last words of his sentences. It was just casual, to start with.
We were always together, in everything we did and the way we thought we were together. On this particular day, I was sewing and he came in to see me. I said to him, “Why have you changed?” He said, “Well I can’t help it.” I don’t even think he knew that he had. I find it hard to describe it now. He wasn’t cross – nothing had happened – but something didn’t click with us. We weren’t as close. I thought he was more casual with me; it was just a feeling. Then, looking back, I did wonder why he wouldn’t use his mobile properly or try to learn anything new like the computer. Maybe he knew mentally he wasn’t up to it, and yet if ever I asked him the meaning of words he could always give me an answer. He retreated from social skills like conversations and playing cards in the last few years. He started making excuses not to go to bridge club. He knew he was losing his memory and he started to get frustrated.
He would behave strangely sometimes. For example, if we went on holiday, he would just get out of the bus when we had reached wherever we were going and leave me, almost like he had forgotten about me. He would talk to someone as he got off the bus and then go off with them, not noticing I wasn’t there. Eventually, he would realise I wasn’t there and he would start looking for me. Then there was the time there was a bit of trouble with the suitcases and we had to put ours on last because we wanted them off first. I just wanted to wait to make sure our cases were put on; I knew I was getting more responsible for things. It was easier for me to get on with things myself rather than to remind him. I waited until the cases came; he was talking to a group of people and got on the bus with them. As soon as I had made sure they were on, I got on the bus. Then, just as the last people were getting on the bus, without saying anything to me, he marched off the bus and stood outside. Something had triggered in his brain that there was something he should have checked or done. Someone asked him what he was doing outside and he said that he wanted to make sure the cases were on the bus. I told him I had already done it and he was quiet. Little things like that were oddities.
Later, he started to get paranoid about things and would take it out on me. He would come and apologise later; he had an awareness at some level that his behaviour wasn’t right. The real sad thing is that we couldn’t communicate in the end and he was so frustrated and confused. He just couldn’t find the words. Going to visit him was so bad in the end. It was a fight and so stressful, but I had to keep going.
He lost interest in his hobbies a long time ago. The only thing that interested him was the garden, but he could only potter as his health was worsening with the MDS. He had no energy and his breathing was deteriorating. The last three years were very different, but it had started a long time before that. I thought he had had a stroke because of his speech and he had started to shuffle and drag his feet. I took him to the doctors and they asked me why I had gone with him. I said I had to go to do the talking for him. That’s when they decided to test him for dementia. I had tried to keep him doing things at home to keep him going – chopping the veg and making cups of tea. But his ability to follow processing through was deteriorating, and in the end I had to do everything for him.
He made an effort with other people and he got cross with me for talking to other people when they came. But he never joined in conversations so it was left to me. He had never been a sociable person when we went out. He would talk to one person, never in a crowd. He never liked using the phone, but near the end he wouldn’t answer it anymore as he struggled to speak.
The sad thing is I struggle now to remember the good times we had together, as the end was so bad and he had deteriorated over so much time. Towards the end, his behaviour was aggressive and demented – so out of character. He was nothing like the man he had once been. He did know me to the end, which is one good thing as very often that isn’t the case. That would have been awful. It’s a very cruel thing to take someone’s personality away. The end is so drawn out that you can only remember the bad things, and other memories seem to be too far away.