I just joined the site as I am at the end of my tether.
I am the sole full time carer for my mother, she’s 76 and had a stroke roughly 15 years ago.
I’m 48 years old and now the only son. (I live in her house)… well in reality it is now my house legally (but in my mind it’s still hers)
my father had been her carer for 14 of those years until he passed away. (in reality I was the sole carer for both for the last 2 or so years of his life) he was a stubborn man and just would not admit that he couldn’t cope
about 5 years ago I had to put my foot down, so I sold my flat and moved back to the family home because it was becoming far too much for my elderly father to cope with
January 1st 2017, my brother died (only 50 years old, my brother had been wonderful in helping out with mum and he would give you the shirt off his back), April 2017 my father died. then to top it all off my only (remaining) friend in the world (my dog) died 6 months later.
I’ve not even had time to grieve.
so I was left in the position of being the only person who could care for mum. (nobody from social work even asked if i wanted to do it, it was just assumed that I would as I was already living in her house by that time.)
I got zero training or direction and was basically just left to get on with it.
after dad died I gave up my job (which I really liked) to care for mum
I have zero life, zero money of my own (unless you count the pitiful £64 a week carers money.) if you total it up I do about 96 hours a week. I’ve paid taxes my entire adult life for this pleasure?
thankfully mum and dad had saved well for their later lives so there’s plenty to care for mum.
mum is paralyzed down her left side and cannot do anything for herself, she cannot even get out of her chair.
we have carers who come in 4 times a day to deal with getting her washed and changed (for obvious reasons mum doesn’t want me doing that)
they get her dressed and out of bed in the morning and again at night getting her ready for bed.
I then do the lifting to transfer her from her chair to her wheelchair and then into bed.
(we have a hoist but it really needs 2 people to operate so I am left using a manual stand aid)
I have severe back problems now because of this (but I struggle on)
mum usually wakens up most mornings at 6am (I know because she makes sure to tell me) I let her lie there until I get up at 8am to give her meds (I need at least some sleep) she goes to bed at 10:30pm
once mum is in bed is the only real free time I get so I end up sitting way later than I should and wake up next day exhausted
I do all the cooking, all the cleaning, the shopping, all the laundry, the ironing, the financials, collect her meds, dispense her meds ,arrange all her appointments. basically i do everything.
(I do have power of attorney to enable me to deal with her bank etc)
all she does all day is sit and watch the same programs on tv day in day out, I can’t even properly clean the house because she complains that she can’t hear the TV when the hoover is on. (so i have taken to giving the place a quick run over at 10:30pm which isn’t ideal but it is the only time i can do it without her losing the plot)
I’ve tried many things to get her away from tv… buy her books, bought her a tablet, tried to get her into some simple hobbies she could do to at least keep her brain occupied (crossword books and the like) it lasts a day at most then she’s back to her normal.
I cannot even open my mouth when she’s watching something or I get stern looks and tuts and eye rolls and the volume turned up.
(I’m supposedly just meant to be seen but not heard)
she has absolutely zero patience and barely lets the words leave her mouth before asking me again.
the carers are supposed to come in at 8pm at night and every single night she starts getting nervous at about 7pm “oh no they are not coming” she is a nervous wreck (I mean shaking and hyperventilating at the slightest triviality) even tho they have never missed a visit in 15 years.
we’ve visited the doctor regarding this but he was no help at all and just tried to tell her she was the only one who could change it (I felt like screaming in his face “SHE’S BRAIN DAMAGED YOU COMPLETE MUPPET she doesn’t think like other people, she needs meds to calm her down” (but she is already on a ton of meds so probably why he didn’t want to prescribe more)
I cannot commit to doing any of my hobbies because you can guarantee that the second I start doing something she will shout on me. (she obviously doesn’t mean to do this but its no less infuriating)
last year I managed to talk her into going into respite for a week and that was great (for me) but she hated it.
(nurses won’t jump to attention the way she expects me to)
I’ve been trying to talk her into going again for about the last 3 months but any time i mention it… hysterics
I’ve never been so stressed (and angry) in my life
I tried talking to my GP but again he was about as much help as a chocolate fireguard
“you just need to make time for yourself” and gave me a ton of leaflets for clubs and things I could never attend.
anyways sorry for the long rant but I just needed to vent a bit to get all of this out of my brain and onto “paper”
I’m wondering if there is anybody else I can contact to deal with MY problems besides my GP or social work (they are close to useless and seem content to pass you from department to department with no resolution.)