I have borrowed one of Sarah's (spacie1) sayings for my title. I have just been chatting with her and I know Gary is so much worse than Ray and yet I was pouring out my troubles to her as if she hasn't got enough of her own without the burden of mine. But I sure need to tell someone exactly how life is for me somedays, without the sugar coating, without the :"I'm fine thanks and how are you?" and without the blank look that comes over a non-caregiver's face when you tell them the trials you face each day looking after someone who is physically and mentally disabled.
I am finding it hard to read other people's blogs today. Because I feel so down today I can't get that whining tone out of my voice. Because I feel so down today what other people are going through seems so trivial. Like talking about a hangnail when the person in the next bed is having a leg off.
I am just so upset about what is happening in our lives. I have tried so hard to look after Ray and yet we now seem to be at the stage where it is all getting too hard. I am coping yes, I am enjoying life no. I need a break and yet I am afraid of what others will say when I take one. The snide remarks that HE was in care but SHE was out enjoying herself. I know a couple of people that will say that. And they are not part of the crowd observing the day-to-day activity here, but a couple who ring occassionally and tell me what an angel I am to take on such a heavy burden and do such a good job of it. Angels may exist in heaven but the rest of us do the burden of the dirty work here on earth.
The first thing I smell of a morning is urine. Ray has a bottle by his side of the bed but is not always good at using it so he has a mat which I wash that the bottle sits on. That is one of my first waking thoughts:"Has Ray gone past the bottle again." This morning he had an "accident" on the way to the toilet. Why do I keep on calling them "accidents" when he does it so frequently? Isn't there some other word I can use? Maybe I can call it a frequent fecal event? He didn't clean it up, he never does, that is my job. Afterwards he doesn't even acknowledge that it happened. It is as if he doesn't acknowledge it then it didn't happen. So when the doctor asks him does this type of event occur frequently he answers:"no". And as it is not in his memory when I answer "yes" he frowns and shakes his head.
He has a lot of bad habits now that he didn't have before at least not the the same intensity. The trivial , annoying ones, leaving taps dripping, leaving the milk out on the side, not wiping up spills. It is as if there is someone just waiting somewhere to clean it all up. That mysterious "mother figure" that we all need who will come by and sweep, clean, mop and dust so we have no responsibility to tidy up for ourselves. I know to a certain extent that was there most of Ray's formative years. He always had someone to clean up after him. Now it is beginning to grate on me. I want him to at least attempt to tidy up or acknowledge that there is a problem. Instead of him just walking away.
And I could go on and on listing his faults until you were so tired of reading this rant that you were grateful for the little irritations of your own lives. And I realise for some people my rants are trivial in the extreme and what you are coping with as a survivor or caregiver is much worse and I do apologize.
Usually after I get this far through the blog I back out and don't publish it. I wonder what you would feel if you could see my raw emotions, my tears of self-pity. But maybe if you tiptoed into the next room you could see Ray laying there asleep, quite oblivious to the turbulent emotions I am feeling. Because even when I yell them at the top of my voice he never acknowledges that he is in any way to blame for how I feel. "What are you so cranky about?" he says. What indeed.