You were always on my mind

I think that one of the hardest aspects of being a caregiver to someone who is terminally ill, is coming to the realisation that no matter how much of yourself that you put in, no matter how much you love, no matter how much you care, you still, in the long run, are not going to win. It is incredibly easy to beat yourself up over the little things. Like when you have just sat down to relax in what you consider to be your time & your darling pages you for something. To be moved a bit in bed, the BIPAP on/off. If you're a caregiver you will know what I mean. Somehow, you find it within yourself to stifle that first burst of annoyance because you have just started a conversation or a game on line, or in my case just sat down for your half hour practice on the guitar. After all, lets be brutally honest here. YOU have chosen to do this. Nobody ever said it was ever going to be easy. On the contrary. Professional caregiving , I guess, must be hard enough, but when all is said & done, the emotional attachment isn't quite the same, no matter how caring & compassionate you might be. Also, you get to go home after 8 hours & be a normal human being.

Caring for a loved one is a full time & very scary commitment. Not only are you responsible for the care & wellbeing of another person & , in my case, their spokesman, as Jude cannot speak, there is the emotional aspect of it as well. You deeply love the person that you are caring for. It's not an easy thing to see them wasting away knowing that no matter how much effort you invest, nothing you can do is going to reverse the situation. Don't get me wrong here, I'm not really wallowing in self pity, or at least I don't think that I am. Although it is always in the back of my mind that, yes, I am going to lose her & no, its not going to be easy, I do know that in my darkest times I can console myself with one thing.

That is, that I am doing the utmost & absolute best that I can for her. No "ifs buts or maybe's" I'm doing the best that I can. I don't have any nursing or palliative care experience other than what I am gaining on the job, but I do have a caring, compassionate & very able team supporting me. That helps a lot. Thanks guys.

Jude decided to come shopping with me yesterday. There were one or two things that she wanted that she couldn't really describe to me, so she came. Its always good taking her for groceries. We put her in her wheelchair, grab one of the special trolleys that clip on the front of the chair & off we go. She sits there like royalty holding the shopping list & points out the stuff that we need as we go. I don't know, but I guess that it helps her to feel useful. Anyway, we had just about finished when we met a lady that we hadn't seen for a number of years. She was visibly shocked when she saw Jude & how much she has deteriorated. Thats OK, but then she proceeded to tell me in a very loud voice how sad it all was & how sorry she felt for me etc etc etc. All the time totally ignoring Jude. Maybe she thought Jude's mental faculties were gone as well. Thats a particularly nasty cross that MND sufferers have to bear. The loss of control in the facial muscles produces a very vacant look. Not so, as we all know, but it's quite annoying when people just talk over the top of her as if she isn't there.

Anyway, I'm going to leave the last word in this post to Willy Nelson. I think he sums the whole thing up well..