New to forum, sorry to start with such a negative. I’ve been caring for my mother with advanced MS for almost four years now, she’s deteriorated so much over this time. Now she can barely use her hands for anything, we were hoping that it might be a temporary thing but it doesn’t look that way anymore.
The past 3 weeks she has been recovering from an infection, if you have experience in caring for someone with MS you’ll know that infections can make an MS sufferer delirious and so for this period of time she has needed virtually round the clock care.
I have been there with here Every. Single. Day. She has other carers but they come and go. These past few weeks when she was ill I was there all the time. Her other carers get to leave the responsibility behind at the end of the day, I don’t have that luxury.
Today is supposed to be my day off. This is something we agreed in the summer when I quit my job to better be there for her needs, Tuesday would be my day off. Someone else gets her out of bed in the morning, someone else comes to give her lunch, someone else comes to put her to bed. It’s my day off.
Rang about an hour ago to check on her - she was supposed to have a phone appt this morning, same time every week, my sister is supposed to help her make the call because of her useless hands. She chose not to do this and has apparently been sat in her room ignoring all calls and hung up on me when I tried to ring her about it.
So I get yelled at down the phone by my mother. I get to feel guilty and ashamed for wanting just one day for myself. I get to worry about what the doctor is going to think about the fact no one answered the phone (we’ve had problems with NHS services because of this in the past)
I hate my life. I hate being the only one in our family responsible for Mum. I’m beginning to hate and resent her and I don’t like feeling like this. We used to be good friends, now I look at what our relationship has been reduced to and I just feel so much anger and loss.
I used to dream about travelling the world, how is that ever supposed to happen for me when she can’t cope a single day without me?
I’m meant to be zooming a friend in less than an hour, currently curled up in bed in floods of tears. Is this really all there is to life?