Hi
Anyone else working full time and caring? Ive come home tonight and lay on top of my bed a while, just whilst Mum’s carers were there. I could’ve lay there til the morning. Could easily have gone without dinner
Managed to drag myself up and go to the kitchen and stick something in the microwave. Meant to be eating it now, but can’t really face it.
Have a bit of time to myself til 8.30 then I’ve to start doing things again
Time to work out where to go from here. You are not invincible. I shall always believe that my husband had a fatal heart attack due to the stress of caring for his parents, my parents and our brain damaged son. We all have a breaking point. I’ve met mine. Tell us a bit more about mum’s needs.
@Shelly1 I used to juggle full-time work and caring. Now juggling part-time work and caring.
Totally identify with your exhaustion - often I could easily do the same (lie down, nod off and not bother cooking a proper meal …
Wouldn’t want to give up work totally though as I think my brain would go stir crazy (plus I couldn’t claim UC as have I have savings, and Carers allowance is a pittance.)
Thanks. She has progressive ms. Her balance isn’t great so she’s not to use the stairs any more. Lots of different people such as physio, OT, doctor said that. But she wouldn’t listen and used to go upstairs looking for things. She has to sleep in the living room on a hospital type bed, and the Carers wash her in the downstairs loo as theres no room downstairs for a shower.
They assessed the house for an extension but it couldn’t be done due to building regulations as its mid terrace. They looked at installing a through floor lift but again it couldn’t be done due to the construction of the ceilings. They’ve said she wouldn’t be safe to use a normal stair lift due to the ms.
I’ve noticed the ms getting worse over this last year. Her speech has got harder to understand, though this varies so times its ok. More bladder problems. Can’t walk very far outside of the house any more as gets very tired. Some mornings she does haven’t energy to get out of bed, and the carers have said some of those mornings she’d be a bit confused. Which isn’t like her. Blood tests and urine tests all clear. Some weekends she doesn’t have much energy and might have to stay in bed til near lunchtime. Other times she’s ok. It varies.
I spoke to the ms nurse and the ms consultant and they said its to be expected
Thanks. I’m glad you’re managing to keep up your part time job. I hope you’re looking after yourself. You’re right about the pittance of carers allowance.
I’m so glad to have my job. It gives me a break from home, and I enjoy spending time with my work friends. I feel ‘normal’ at work, worthwhile. At home, familly sometimes make me feel like rubbish, and not a good enough daughter.
You’re right. I remember reading your story here before. You certainly have been through a lot. At times I’ve thought the only way it might end, would be if I took a serious illness of some sort and then someone else would have to step up.
I just want to be able to live a more normal life and do stuff like visiting at weekends, do her shopping and housework. Take her out. Then have my own time during the week, and have some free time after work.
I dread my future and feel like I’m wasting the best decades of my life. My dad lived til 69, his heart. and my mum is in poor health with the ms. So I fear reaching that age and ending up like either
Sadly mum is getting worse every day, nothing can change that. Have you been in touch with the MS Society for advice? Have you seen a home you would like?
No. Mum is looking at sheltered housing and has recently joined the waiting list. She has plenty of points. The OT did say to Mum about a year ago, about sheltered housing but its taken til recently for Mum to want to apply. My aunt had said before to apply for somewhere with 2 bedrooms, so I can go too 
The OT said to me that if Mum moves to sheltered housing, it’ll make it easier for her when she needs a home. I do see that happening in the future, as I unfortunately read on the ms site about how bad progressive ms can get. I know it doesn’t happen everyone. But i do see Mum’s ms getting worse. Years ago I’d myself convinced it wouldn’t ever get that bad. But reality caught up with me.
If mum is already feeling so tired that sometimes she needs to stay in bed until lunchtime, then I doubt that sheltered housing is a long term solution. Two bedrooms, one for you to keep caring (!) is condemning you to servitude until she dies or moves into residential care. What will happen to you then? Probably asked to leave? Have you had a Carers Assessment recently? I have private counselling funded as a result of my assessment, someone independent to discuss things with, initially to manage my own mum’s expectations of what I could do for her when I was disabled, supporting my brain damaged son and running a business. For once someone looking at me and my own needs encouraging me to put myself first.
You’re right. And yes that is what both of them, especially my aunt want. Im just there to care and get spat out at the end. Its shocking that family can’t even see that, all my aunt can do is focus on how its so important for me to be with Mum. She doesn’t seem to think of the future beyond that. It’s quite sad to realise the people who are meant to love you most in the world, are like this
Yes have the carers assessment today. It was to be done at home but I emailed the social worker to see about doing it over the phone instead. She replied yesterday evening but I didn’t see it til later.
Does aunt have a daughter/slave locally doing her bidding? Or is she just worried that if you don’t do the caring she might end up being lumbered with having to do the caring herself. That may well be her hidden agenda?! Once you realise no one really cares about you in your own right, the tables are turned. Why should you do all this caring? I’m sure you feel your hopes and dreams of a home of your own, a partner, a social life are fading away. You do NOT have to sacrifice your life to help mum. Did she care for her mum as much as you do?
No she hasn’t any children. That hadn’t occured to me at first, because I’d always seen the kind side of her. The first person to point out to me that she was maybe looking to avoid having to do any caring herself was a friend at work.
My aunt actually said to mum a while back that she shouldn’t expect her to do any caring because she’s getting too old herself. I think she’d said about not doing stuff like shopping, she wasn’t referring to personal care.
Yes i do feel like nobody cares. Its like they both just see me as someone to do the caring, and so what about what happens me when I’m older. Think they’d want me to build my own life and family. I’ll have no children, neices/nephews, I’m an only. Though I’d never want anyone giving up loads of their life to look after me when I’m old. Just be nice to have some family to chat to and some visits.
Haven’t really had a social life yet. My mum says, “But you get to go to work”. I’d love to meet someone and settle down, but I don’t really have any free time. I never really had the opportunity for that kind of thing when i was younger, so to be an absolute beginner at my age is very embarrassing.
What mum did for her parents was to visit twice a week. She had a cuppa and chat, then went into town to get groceries, and came back then gran had lunch ready for mum. Phoned at weekends.
Mum didn’t have to do any care, as by the time that was needed, my aunt was doing it full time. Gran didn’t want carers. My aunt ended up getting barely any sleep and was under massive stress for a few years. There was another who lived very close to them, but did nothing to help. Mum lived further away
I was widowed at 54. Now I go away on holiday with other single people, very friendly.