Hi Purdy - thanks for the reply, and I'm sorry your family has been through this too. It is just horrendous. You said your dad told you he wanted nothing to do with you - that must have been so upsetting to hear, even knowing that he didn't really mean it. How long was he hostile towards you? Lewy Bodies is just awful - none of us can believe the speed at which it has taken my poor dad and just debilitated him, both physically and mentally. Is your dad disabled by it, or is he still mobile? Yesterday I asked one of the nurses who has years of experience working with patients with this particular type of dementia if dad would end up like one of the poor people I see in the home who are bed-ridden and unable to communicate, and her reply was, 'It wouldn't be fair to lie to you. Yes'. I cried in the car after leavng to go to work. Since January, dad's condition has deteriorated by the week - the condition is changing faster than we can keep up with and none of knows how to handle it. He has started choking on everything he eats, as well as on water - the first time it happened I went into a total panic and didn't know what to do. His voice is getting weaker all the time and is now barely a whisper - I have to lean right in to hear him and he gets frustrated if I ask him to repeat anything.
I'm glad you and your dad get moments of clarity, and that he knows you love him. I hope dad will come to realise the same for us x
I'm glad you and your dad get moments of clarity, and that he knows you love him. I hope dad will come to realise the same for us x
Hi Northern,
Just wanted to give you a bit of support. My poor dad also suffers from Lewy bodies. He has been in care now for two years. What a rocky road. This awful awful illness has totally taken his dignity. At first he was so hurtful to us saying we had stitched him up and he wanted nothing to do with us. It was was an awful situation. His behaviour is challenging to say the least. Anything that would be your worst nightmare he has done. He is now in a challenging behaviour unit we still have struggles, ups and downs. However I would add I visit at least three times a week and he is well cared for by a team who understand his illness. I know exactly how you feel and the hurt and guilt but you also need to look after your immediate family and mum. It is heart wrenching I know but this illness holds no prisoners, your poor mum, your sister and yourself will be worn out. My Dad is well cared for and he knows we love him. He recently told me he only now realises how much I do for him! This means so much as he cannot normally string a sentence together. Good luck and very best wishes. I know exactly how you feel. X