As regular followers will know, I am the full-time carer for my partner who has young onset Alzheimer’s. I have shared many ups and downs but just recently I don’t like who I have become.
I love my partner, always have, always will. I sometimes find myself not liking the person that Alzheimer’s portrays him as, the changes it has brought to our relationship or the situation it has left me in.
I was not forced to give up work to care for him but he was deteriorating fast and I knew I would not have long with him if I did not play a more active part in his life. We have had quite a number of successes, we feel we have turned the clock back a little, we have fun.
However, the role is full-time. There is no let up and recently he has become very clingy, not leaving my side, often sitting outside the bathroom when I am in there. I think he has probably been fighting an infection and is finding the world a little more confusing than usual. I think he feels vulnerable and needs reassurance. But I found myself just wanting to scream; I felt like I couldn’t breathe. He was warning me of dangers that weren’t there. Standing inches away from me while I was trying to cook. Worrying about everything.
I got snappy. I hated myself for it. He was hurt and, of course, got worse. We were into a vicious circle. The problem could not go away, there was no space, no time off. I shared with a friend on-line. She asked what she could do. I asked her just to listen, to let me share.
I have a couple of hours off one evening a week when a sitter comes in. A chance to be me, unguarded, without having to look over my shoulder or listen for problems. The friends I meet agree the situation is s**t, only going to get worse and hug me. They tell me my reaction is reasonable. I am not losing it. Why do I still hate myself for it then? Am I reaching burnout point or am I just being a human being with human reactions to an inhuman situation?
It is a very long time since I have posted. Life has not necessarily been easier but maybe different.
I have always been a fairly practical person. I was my husband’s mechanic when he raced motorbikes and a willing assistant to my Dad when he did joinery in the evenings. But there were always some things I never did. I never had to do. This is changing as my husband loses his ability to understand what his eyes are offering him. He is also appearing to lose common sense.
This latter point might need some explanation. Common sense, I have come to realise, is the application of our accumulated memories in a logical sequence. Some of those memories go back to experiments with sand and water and bricks when we were toddlers that enhanced our understanding of our world. Start removing random bits of those memories and there is no logical sequence through so understanding the balance point of things on a trolley, putting a spade in front of the dust and broom rather than to the side or the difference between here and there, are all annoyingly, frustratingly difficulties.
So in recent weeks I have had to use a Stanley knife for the first time to cut up the old carpet in the garage and lift very heavy crates because he can no longer understand how to hold them. We have between us though, successfully refloored half of our garage. The garage is important to him.
I have had to research someone to repair and paint the side panels for one of our motorbikes. I am gaining quite a collection of local trades people who can help. Not all of these were tasks that my husband could do anyway but he would have done the phone calls and the running around. It is important we make progress on restoring the motorbikes.
Whenever we went fishing I was always content to be handed the rod already set up and baited. I never got involved in the tackle and requirements. As part of sorting the garage we needed to sort the fishing gear that was in a terrible mess. We had inherited equipment from his late Dad and Grandad which had never been checked. Over a number of afternoons we went through and dredged up memories, looked on YouTube and generally sorted so that he now has a working rod and reel for each type of fishing, along with two boxes of suitable extras. The rest has been binned, sold, passed on or is in the process of. It meant that he was recently able to join an old friend fishing. Important time away from me, just being another fisherman. I can now fix reels to rods, tie hooks, and affix floats. I might even go fishing again one day.
These may not seem like big skills or tasks but they are new learning for me. Things I never expected to need to do. A level of involvement in someone else’s hobby that is important to their wellbeing if not mine. Now the running we have both started doing, now that is good for me as well as him.