It is a long time since I last wrote a blog post. Oh I have written many in my head; some very interesting drafts are created in that moment between awake and asleep at night when you recap the day. I often plan sharing the changes I haven’t coped with, the sense of loneliness as another bit of the lovely man I married leaves us and new ways of completing tasks that we have discovered.
I find the constant change difficult. Don’t get me wrong, I know my husband does too but he only has the change to cope with in that moment. I have the change, its consequences in that moment, my emotional reaction to the outcome and long term plans to consider. Let’s try a couple of examples.
We are trying to complete a number of home improvements and decorating tasks that have been outstanding for a long time; I just couldn’t cope with that on top of everything else when I was working full-time. Normally my husband would have done all of these and the planning for them but not now. He is aware that he cannot do as much as he used to and is a little depressed about that so I am trying to involve him as much as I can. Yesterday I decided he could probably cope with putting primer on the wood we are using in the fitted wardrobes. I retrieved the bench from the garage (to prevent damage to the motorbikes when he misjudges how high to lift it), set it up on the lawn (to avoid issues with paint on the drive or the patio), put the plank of wood on the bench from the hallway where it had been (to avoid damaging the decoration inside the house as he misjudges how long the piece of wood is), placed the brush and tin of primer on the lawn next to the bench (to avoid him opening the tin of primer and walking around with the tin open looking for the brush), ensured he had overalls on (to avoid obvious potential damage to clothes) and having done all that, went to do some ironing while he primed the one plank.
A few minutes later I hear the water being run in the utility. I go downstairs to see white primer everywhere in the sink and bowl and surrounding surfaces. Having finished the plank, he had forgotten there were some other bits to do and was cleaning up. What was the change? He had completely forgotten that the paint residue would stain the bowl and some of the surfaces. He would normally have washed it in a particular bowl we have for such tasks. I now have an additional mess to clear up. I needed to be able to rant at him about the damage to the area, I needed someone to care about my home, I needed to walk away and calm down. I had to take a deep breath and pretend everything was fine. I had to remember that in the grand scheme of things this was nothing. I had to make a mental note that I needed to put the washing bowl on the lawn as well next time and perhaps stay in sight.
Yesterday he couldn’t remember the damage that paint could do.
During the last month he completed a cycle challenge for charity. It was 100 miles. The actual event was to be ridden with our two sons but training was done on his own. Scared of traffic, my husband stuck to very quiet roads for his two hour rides. However, increasingly he was getting lost. Some days he couldn’t remember the route he had told me he was taking, he couldn’t remember the name of villages he went through, he couldn’t read the signposts, couldn’t remember the geography of the area to find his way back. Other days he was fine. He had a computer on his handlebars that had a ‘get me home’ function but he couldn’t remember how to use it.
One day I had a phone call to say he had a puncture and he wanted collecting in the car. He was on the ‘back road’. I tried to discover which back road but the more questions I asked, the crosser he got and just demanded I come and pick him up. Eventually a description of the cottages gave me the clue I needed and I drove out. He was still cross when I arrived. My emotional response at his rudeness was driving me to just get in the car and drive off and leave him to cool down. But, I needed to remember this was the AD talking and not my mild-mannered, loving husband. I needed to get him home before he did something stupid (he was already wandering around in the road as he gave voice to his frustration). In the longer term, I will be joining him on cycle rides with a puncture repair kit in my back pocket.
I am stuck in this circuit where the easiest thing to do is to not give him the freedom to make the mistakes. My goodness I would save myself considerable angst. However, this is not good for my husband’s mental health, his self-esteem and the slowing of the progression of his AD . I am having to balance his mental health against my own. To add to the dilemma some days he can manage these tasks with no problem!