This week I was told that it was no longer appropriate for the boys to be left alone with me because it placed to great a responsibility on them. Here isn't the place to voice my opinions on this viewpoint, but irrespective of whether the decision is correct, it has left me feeling redundant and resentful. It's going to make it difficult for Tracy to go out without coordinating it to when a carer is here or my mum being available to come over. This obviously is going to impact Tracy's ability to go out which isn't good for her and I don't want to be responsible for that. Throughout this illness I have aimed to minimise the impact of it on Tracy. I (with the help of carers) try to be self sufficient in terms of care and organising everything related to MND. I will be honest by saying that my determination to do this is largely driven by a trait I have always had, which is hating being indebted to anybody. So until now I like to think that whilst Tracy is now effectively a single parent with the stresses that brings, I have minimised any additional work relating to my care. Being able to mind the boys when she goes out meant that she had one advantage over an actual single parent, but it will no longer be the case.
Being told effectively that I am no longer fit to look after my own sons is something I wasn't prepared for; that a carer, a virtual stranger is more suitable than me to care for them is difficult to comes to terms with. Like being PUT to bed at 9-30pm, it makes me feel like a criminal. Accepting the direct physical effects of MND is difficult enough but these consequential side effects which rob me of my freedom of choice or limits my participation beyond the limits imposed by the disease directly, are the hardest to bear.
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About Me
- Steve Evans
- OK, should have done this two years ago when I was first diagnosed with Motor Neurone Disease but better late than never. I thought it would be a good way of keeping anyone who was interested up to date with what's going on with us. Communication is getting harder and whilst I want to keep texting, emailing and chatting to everybody this seemed a good way of saying more things to more people more easily. Typing is a slow process (this has taken 20 minutes so far) so a once to many approach seemed good. I hope to keep it up to date with various stuff including whinges about things MND related as despite trying to "keep positive" it does affect (in a generally f**ks it up kinda way)almost everything I do! For those of you who really want to, you can check out my "status" on my web link. Finally, PLEASE leave comments, even if brief as its the only way I know its being read!!
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6 comments:
x
sorry steve, I won't try and say something that probably won't help, so I just wanted to let you know I'd read this and am thinking of you.
Brenda x
erm, Steve - time to get the big guns out. How DARE these people? Who said it? What is their legal basis? I am sorry, but this is unacceptable. This reminds me of doctors getting women to have caesareans by statementing them mentally. I would seek some legal advice. You are their father, you are a great father, Tracy needs her time and this is foul. Please fight.
Completely nuts!
We too are thinking of you mate
Phil & Laura x
Sorry to hear this Steve, so sorry. MND takes everything eventually. So close to fathers day too. No matter what age the children are when MND comes calling there are advantages and disadvantages (in the age they are at), I never had to face this dilema though. I don't even know where you get the bollocks to write about it. Roch
Not to be ableist but a blind person could see that you continue to parent (verb) as their parent (noun). I echo the call to challenge this idiocy. Common sense and legal autonomy should prevail.
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