Reply To: my father is paralysed neck down.

Im so sorry about your mother.

i understand and feel your struggle, the only way i personally manage to take care of my own father is by sacrificing many things that came my way. luckily i have 3 siblings, they are all married but work around my dad’s comfort, they have families and children, my two brothers come in the morning to help me wash him and my sister takes over on weekends, i’m homebound i allow myself a break once a week but my dad requires 24/7 care so leaving his side is not an option for me. with you it can be exactly the same, i suggest you do as they wish, let them live together and make arrangements with you sister where you swap shifts arounds, you do mondays she does tuesdays and so on. but before you do any of that you need to accept it all, i’ve learnt the hard way that pretending like its not happening is not going to help stay strong, i had to absorb it all in and accept that my dad is bed bound and accept the fact that he needs support even in the tiniest details,only when i accepted things i managed to fit my life around his.

don’t give up hope, once you do you end up like i sometimes do, curled up on the floor crying my heart out. it is so hard! hope is all we have, even if it ends the way it is we need to stay hopeful, think about doing part time work so you can look after your mum properly, you can’t forget yourself too.

as for the pump in the foot, when my dad did his plasma exchange his toes started to wiggle and he is picking up light strength everyday, I’m not sure that cider affects the speech, i don’t actually think it does, you might want to look at a different diagnosis?

we only have each other, yes our loved ones are affected by cidp but we suffer as well, i’m here for you to pick you up if you need anything, this is our 4th year with dad so I’m kind of getting used to it..where do you live if you don’t mind me asking? i only ask because in the uk we have a government scheme that helps people caring for sick parents or members of family

let me know and i’ll explain it all to you