It’s been a while. What can I say, I’ve been busy. May is Huntington’s Disease Awareness Month and I decided it was time for a new post. My focus in the past has been Kev. However, as the blog is called Kev, Me and HD, I thought it was time to talk about me. The carer and my life now.
The last couple of weeks have been difficult. I am starting to notice the decline in Kev’s cognitive functioning. But it is the way this is manifesting itself that I have had difficulty with. Kevin is regressing. He has become more focused on self. Everything has become about him. In an adult, you would call this paranoia or delusion. He is having extreme emotional responses and angry outbursts over what seems to be minor and insignificant situations. It is worse when he forgets his meds, when there are changes to routine (like all of us being home for school holidays) or when he doesn’t sleep. I was beginning to worry that he may be developing some form of psychosis.
Then my teacher brain kicked in. His social and emotional intelligence is also declining with his cognitive ability. He no longer has those social filters most of us learn as we develop into adults. How many times have I explained to my students: “just because you think it doesn’t mean you have to say it.” He no longer has the reasoning skills to process his emotional responses. The normal cognitive behaviour therapy statements don’t work and often make him more agitated because he can not understand the question. “Why does it matter?” “What is getting angry going to change?” “What control do you have over the way other people act?” Kev can no longer make sense of his responses or these questions. And for a while, neither could I. Finally my teacher brain yelled to be heard over the sadness, hurt, confusion and finally the penny dropped.
Sadly, I will have to apply the theories of childhood development in reverse. Changing the way I deal with it has helped. Now, I don’t engage in discussion when Kev is distressed. When the outbursts are hurtful or out of character or just plain distressing, I remind myself that it is the disease and not the man. It is not personal. I do not engage him, reprimand or cajole. I remove him from the situation (or the situation from him) and wait for him to calm himself down. Then we deal with it when everyone is calm. Sound familiar to any of the teachers out there. Unfortunately, I am not doing this with the hope that my student will learn more self control and emotional maturity. I am doing this with the knowledge that it is going to get worse. And by the way, in case you’re worrying, I checked with his doctor and it’s not some form of psychosis.
HD sucks! No one should ever have to use their understanding of cognitive development in reverse.
Fortunately or unfortunately (depending on how you look at it), only his immediate family get to see this. He is still good at his public game face. Except when driving.
My new mantra is: IT IS NOT THE MAN IT IS THE DISEASE
Sorry. This blog post sounds quite bleak. I am a cup half full girl (remember that even when ’empty’ the glass is still full unless it exists in a vacuum). Now that I know what to do, this situation has stopped being so distressing. Now that I have the words to explain it to my children, it is less confusing for them. Now we have a plan to deal with it, it is much less difficult.
And Kev is not always like that. He can be wonderful, thoughtful, caring and kind. I know this part of the disease is his biggest fear. This is what he dreads most. The loss of his emotional intelligence. But after going on a HD camp this week, he can see that he still has it and is better off than some who did not have a high emotional intelligence to begin with. I am convinced that it will never leave him completely. It didn’t for his mum. We may just have to try a little harder to find it.
IT’S NOT THE MAN IT’S JUST THE DISEASE!