It's taken me a while to write this one.
A little while ago, whilst on Twitter, I saw a post by the wonderful Lee. It had an article from the BBC News (read me) and it really, really set me thinking. I don't go looking for things about Dementia online. I tend to keep my head buried in the sand, sometimes because things don't really relate to us and others because I just don't want to know. There are lots of people on Twitter that I value dearly, and when they post things on there I do have a look because what they post is informative rather than some of the waffle you can get online.
It's taken me awhile to write about this post because it really pulled at my heart strings. I read it with tears rolling down my cheeks. I read it from a stranger's perspective, but then realised that for all we're strangers, we're not because it was a mirror image of our house. The young diagnosis, the young children, the young wife. We were diagnosed a year earlier and we're coming up to year four of this illness, if you don't count the couple of years prior to the diagnosis where hubby was showing signs of it.
We're nowhere near where the family in this article are yet, but I'm well aware that we will be someday. We've gone through the telling of our beautiful girls and the struggles that they have coming to comprehend this awful illness. I'm not convinced they comprehend it at all, but in our simplistic explanation of daddy's memory doesn't work properly, they have a grasp of it. We go through the financial struggles all the time, constantly. I often think that our situation would be a lot easier to deal with if we were financially stable.
I know of the life expectancy. I know it's between 7 and 10 years, and we're coming up for year 4, but for whatever reason we seem to be stemming the decline because of his unparalled response to Aricept. It hasn't stopped everything, we still see the illness, but it also makes me wonder if it means we're storing up an almighty decline that will come all at once and rapidly.
I worry about the future. Hubby, the girls, his parent's and sibling's. I stress about the finances, about how I will afford to care for him, to keep a roof over our heads and all of the bills that will still need to be paid when it's just me. Even the thought of a funeral and the costs surrounding this. I worry about hubby having to go into "an old people's home" at a young age, but then my sister-in-law pointed out that if that was necessary it would be because he would be in the same position as the old people and he wouldn't notice the difference. I hadn't thought of that.
I swing between two thoughts about hubby. Now don't get me wrong, I love him dearly, I love him to pieces, but I swing (selfishly) between the thought of him dying young and me being left as a young widow with everything to deal with on my own, things like him missing the girl's weddings etc, and then I swing to the other side of the spectrum with the thought of him living on into his 80's and the thought of having another 40+ years of dealing with this illness, and how I'll manage and then the thought of him missing the girl's wedding because he's too ill. It's a very sad state of affairs, and sometimes I think I focus too much on myself and the effects this Dementia brings onto me, especially since my brother told me that I use the Dementia card to gain sympathy (something I will never, ever forgive him for).
I would like to think, as in the article, that I could keep hubby at home till the end. I'd like to think that I would be sufficient enough for him and manage to care for his every need, and this is the approach that I will take, unless it proves that I'm not enough, but for now that is my thought process on that matter.
Whilst I think a lot about my feelings, I sometimes forget what he must think about this illness. I will never know because he has never told me, and I don't imagine that he ever will. The only way I can imagine it being like, and I'm probably way off bat on this one, but I imagine Dementia to be like being a puppet master. Dementia hovers above you and holds the strings, and sometimes it falsely lets you think that you're in control, but then it pulls the strings and you are played like a puppet as Dementia sees fit. You are no longer in control, but at the whim of Dementia and trying to keep control, and be in control becomes more and more difficult as the puppet master grabs the strings tighter and tighter. I can't imagine this. I can't imagine my thought processes being taken out of my control, my precious memories being removed from me, and whilst I think that all of the physicalities that Dementia also removes from an individual, I think that removing your being "you" is the most awful aspect of this illness. It's simply cruel.
I'm not sure what I've gotten off my chest here, or even why, but thank you to Lee and to the family in the article for making me sit back and think, and for letting me write things that I hadn't realised that I'd even thought.