A while back, when at the carer's meeting there was a lady who was from the NHS. I think she was some sort of Neuro-Co-ordinator. Really great fiesty lady. The kind you would want looking out for you. Anyway she said that when she heard the stories around the room she was amazed at the amount of love the carers had for whoever they were caring for and that she didn't know if she could do it. My knee jerk reaction was - 'love?? no we are just stuck with it' (see I never said I was a nice person).
Since then I have reflected on what she said. Why do we stick around? yes, im married...in sickness and in health and all that. In reality however I could just up and go. What's to stop me? I could have a care free life again for a while. I'm certainly not here for the lifestyle...not my thing. Nor for the money...ha ha to that one. So why am I here? Well, whilst I know I could not walk away from this. Even if I lived elsewhere I would constantly be wondering how he was. Had he taken his meds. Has he been attending appointments. I would want to attend his appointments with the specialist. Let someone else go instead? no, I dont think so....too much of a control freak,me. I wouldn't trust anyone else. I would worry about my kids. Is he still being a good Dad? I want to make sure he listens to them and knows every detail of their lives.
The thing is Mr W is still my best friend (yes HD you havn't taken that yet) he is still the person who never left my side once whilst I gave birth (ok once to go to the toilet and even that I told him off for). He is still the person who has loved me unconditionally for the last 20 years or so. So now he is different but he is the only person I know who could be so brave in dealing with this disease. Never doing self-pity (and comforting me when I wallow in mine). He is still giving 100% of himself to this family (even when 100% is not much).
So, what is it then that makes us stick around? I guess it is love.
p.s thank you to everyone who is continuing to read my wafflings and thank you for showing you care xx
A while a go a heard a story about a woman who took take of her husband for many years, and although he did not have HD, he did have some kind of neurodegenerative disorder. She talked about how she stuck around, and at times didn't even know why, and caring for him got more and more difficult as the years went by. Well he got sicker and sicker and eventually died. SHe said that as soon as he died, all the pain of taking care of him for all the last decade or so of his life, disappeared. SHe said that for the first time in years she could see him clearly as he actually was, not as the disease had made him. And she was so thankful for that, she said it made all the tough times completely worth it.
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