Of course I could be wrong...afterall Dad can't really express himself...I think his yells mean anger and his laughter means happiness...but what do the involuntary jerks mean, what does it mean when he reaches up to my face and then scratches or hits me...is that really a kiss he gives my mother when she leans into him or is he opening his mouth involuntarily (it really does look like he is forming a pucker tho), when he says Babababa...is he referring to me, his baby...or is this just some random noise that comes from him, but seems to come more often around me...and when he is really trying to talk to me??
But I am sure that was a look of love from him the other day. I am sure he was listening keenly interested in what I was telling him when I talked about a tv show I saw where a man with cerebral palsy after not being able to talk or control the majority of his movements most of his life, was finally able to communicate with the help of a computer and it turned out he was completely normal with regards to his thoughts.
I ask Dad to let go of my hand and if I wait a minute he does...if I tell Dad that there is a step up in front of him, if I wait a minute, he lifts his foot higher. What about the time I told him that he had homework, that my brother was coming to visit and that he had to think of something to say to him, or some reaction to show...and have it ready for when my brother walked in the door...and when my brother did arrive, my dad said 'Oh boy, oh boy, oh boy!' the most words in a row he had said for at least a year and hasn't said as many since?
When he leans back on the chair after I have just told him that he can lean back because the seat has a back...is that coincidence or is that evidence that he can understand and react to what I say? When I tell him my mum is coming to visit soon and he turns to me and suddenly says a solitary 'when?' is that coincidence or did he understand what I said and wanted to know when?
I've been thinking these thoughts for a few years now, since Dad no longer 'talks' and has no obvious control over the movements of his arms and hands. And I think I've decided...he's still in there. We talk around him, the nurses manhandle him...but he knows what is going on.
The good thing is, unlike the rest of us, most of the time he seems to be ok with that...our idea of happiness is completely different to his. We can't imagine that he could be happy in an old folks home unable to communicate or look after himself. But his idea of happiness is seeing his family come to visit, having some illegal biscuits and chocolates (he's only supposed to eat mushy food - but has been eating the contraband for the past 2yrs with no ill effect), and going for a walk with us all around the home and outside it too. His idea of happiness is hearing about the latest scientific progressions towards a cure, or other technological innovations. His idea of happiness is seeing us get so excited about him managing to lift his foot for a step, or seeing him laugh.
The whole situation still tears me apart if I think about it too much,..but I try to take heart that these days its more me that is hurting because I miss the old Dad, because I worry that I could be doing more for him. I can no longer claim that I am crying because of his pain...because if truth be known, he seems to have come to terms with the whole thing far better than I have! Thats what it seems...and 99% of me is sure it is the case.
But I am sure that was a look of love from him the other day. I am sure he was listening keenly interested in what I was telling him when I talked about a tv show I saw where a man with cerebral palsy after not being able to talk or control the majority of his movements most of his life, was finally able to communicate with the help of a computer and it turned out he was completely normal with regards to his thoughts.
I ask Dad to let go of my hand and if I wait a minute he does...if I tell Dad that there is a step up in front of him, if I wait a minute, he lifts his foot higher. What about the time I told him that he had homework, that my brother was coming to visit and that he had to think of something to say to him, or some reaction to show...and have it ready for when my brother walked in the door...and when my brother did arrive, my dad said 'Oh boy, oh boy, oh boy!' the most words in a row he had said for at least a year and hasn't said as many since?
When he leans back on the chair after I have just told him that he can lean back because the seat has a back...is that coincidence or is that evidence that he can understand and react to what I say? When I tell him my mum is coming to visit soon and he turns to me and suddenly says a solitary 'when?' is that coincidence or did he understand what I said and wanted to know when?
I've been thinking these thoughts for a few years now, since Dad no longer 'talks' and has no obvious control over the movements of his arms and hands. And I think I've decided...he's still in there. We talk around him, the nurses manhandle him...but he knows what is going on.
The good thing is, unlike the rest of us, most of the time he seems to be ok with that...our idea of happiness is completely different to his. We can't imagine that he could be happy in an old folks home unable to communicate or look after himself. But his idea of happiness is seeing his family come to visit, having some illegal biscuits and chocolates (he's only supposed to eat mushy food - but has been eating the contraband for the past 2yrs with no ill effect), and going for a walk with us all around the home and outside it too. His idea of happiness is hearing about the latest scientific progressions towards a cure, or other technological innovations. His idea of happiness is seeing us get so excited about him managing to lift his foot for a step, or seeing him laugh.
The whole situation still tears me apart if I think about it too much,..but I try to take heart that these days its more me that is hurting because I miss the old Dad, because I worry that I could be doing more for him. I can no longer claim that I am crying because of his pain...because if truth be known, he seems to have come to terms with the whole thing far better than I have! Thats what it seems...and 99% of me is sure it is the case.
