Long, long ago, back 41 years ago in fact I was pregnant with our first child. Somehow I picked up food poisoning and for twenty four hours or so rarely left the bathroom. I laid on the floor, went into the shower stall or alternately put my head over the basin. I was really, really sick. My husband Ray rarely left my side, as I was sick he went off and got clean clothes for me and I washed myself off. In the end I felt better and got out of there.

Sometimes when I have been cleaning up Ray over the last few years I have thought of that time. He didn’t complain about helping keep me clean, so why am I complaining? My guess is that it is the “always” factor – I feel as if I am always doing it, showering him, washing his clothes and changing the bed. But it in not true, each incident is separate and each time I need to remember that long ago, he did it for me.

It is the constant nature of caregiving that gets to me and probably to most long term caregivers. There is no let-up. The person you look after does not wake get up one morning and is well for a day, strong, competent, and cognitively sound. You wish they would, you dream they could, but it doesn’t happen. Just like a survivor dreams they can walk and run and not fall over, the caregiver dreams life is back to normal and cries. Or I do anyway, not often but sometimes, after one of those vivid dreams, that life has suddenly returned to normal and Ray is restored to full health again.

Ray has been only occasionally incontinent of late, always wet but not soiled now. The changeover from metformin to insulin did that, just as the kidney specialist said it would. Giving him insulin twice a day, checking his blood sugar etc is a nuisance but it is better than constantly doing laundry. I wish the urologist had been as successful with the fluid problems but he wasn’t. Some things you just have to accept.

We went to the orthoptist and got the new AFO (brace) today. The disadvantage of the new one is that I will have to put it on as it has an ankle strap as well as the one at the knee. This is to make doubly sure there is no movement and no friction so another diabetic blister does not happen. This means a change of routine for me and for the carers as he cannot put it on tightly enough so we will have to do it. I will probably complain about that from time to time as it is another “must do” and I have a lot of them.

I get tired of doing all the things I have to do and I get upset when someone pulls me up on something they think I should have done. The orthoptist doesn’t like Ray’s current shoes and asked if I thought them satisfactory. He would like me to buy a much more expensive brand and have them professionally fitted which can be quite expensive. I will probably have to do that. The same problem over and over, Sue must do this, Sue must do that. If Ray gets another blister it will be Sue’s fault. I guess that is right.

Mum was funny yesterday. I was with her for an hour and a half. For once when I put my hand in hers she gripped onto it and when I spoke she turned her head to face me. The therapist was doing hand massages. She turned up some more lively music and we started to talk. Mum would turn her head to Michelle when she spoke and back to me when I spoke as if she was following the conversation, she occasionally made some noises herself as if she was joining in. All the time she held on tight to my hand. It was the first time for ages I felt as if she was an active participant in what was going on. It is not often I leave the nursing home feeling better than when I went in but I did yesterday.

I have to “take the swings with the roundabouts” as my Dad used to say. I think that means you get to have what you like and want sometimes and other times you just have to have what is available. I understand that. Caregiving is a bit like being at school, you might not like what you have to do but you have to do it anyway, day by day, and in the end you find it was giving you an education.