Expect the unexpected

Dealing with this disease is a bit like dealing with a very young child. Last night as I was putting away Christmas ornaments I was alarmed to see my ceiling preparing to disintegrate. Turns out he had turned the tap to face the back wall in the bathroom and left it running so that it flooded and was coming through the ceiling. Added to that he has wandered now twice so the question must be faced, Is it time to consider placement. What a dreadful choice that is. It is probably the loneliest and hardest decision anyone can make and yet I think the time does come when it sort of makes itself.

One Day at a time

One of the upside things of this disease is that it forces you to take one day at a time. It is heartbreaking if you look back and compare him now to what he once was. It is equally fruitless to think about the future because you know the disease's progress. Instead you have to focus on this moment, this day. All in all that is not a bad thing.

Decisions

This week I have billeted artists for a local music festival. At first I wondered if it would be too much for my husband and then if it would be too hard for those billeted but I have to say both have worked out wonderfully. I shouldn't be surprised. The sensitivity it takes to be a good musician exhibits itself in other areas as well and both could see behind the present state to the giant that lives within and while my hsuband could not initiate conversations he certainly responded positively to the guests' stories. More importantly they made him laugh, always a good thing.

Tough decisions

Adrian's case worker came for a visit and we discussed the possibility of a short term stay in a suitable facility. On an intellectual level I know it is becoming necessary for my overall health but in the heart it is a very difficult decision. I know he would be well looked after but I fear he might take it badly. She reassured me that the first eight hours are difficult but then they settle in. Apparently they recommend respite like this every three months. That seems so unrealistic given how long I have gone without. A day here, two days there but no sustained break for almost three years!

Anger management

For the first time he let his frustrations out. I could not understand something he was trying to tell me and I asked him three times to repeat. He got very angry and told me it wasn't his fault if I was ignorant and stupid. I know that it is the disease talking but it was very shocking nonetheless and for the very first time I felt a weariness that extends to my very soul.

In my memory locker

Sometimes just out of the blue he makes the most amazing statements. The other day he told me that he feels " his light is fading " but that he wanted me to know when the darkness begins to descent his last thought will be of me and all that we had together. what greater gift could he give me?

Reading material

Sometimes despite the severity of the situation you have to laugh even though what you are seeing is tragic. This was a man who wrote sonnets, cantatas and could quote numerous of Shakespeare's soliloquies. But yesterday enjoying the sun, he took out some reading material and was completely engrossed. It was the phone book.