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Wanted: Magic Wand - Carers UK Forum

Wanted: Magic Wand

Tell us a bit about yourself here.
Hi all,

Compared to some of you I'm not sure I have that much to complain about.. I really feel for a lot of the people who post on here.

I've been looking after my mum on and off since my dad died when I was 15 (I'm 30 now - *shudder*), but I had to move back in with her as a full-time carer last summer. Not sure where to start really! I don't really expect practical solutions any more, it feels like I've tried everything, so I'm just venting I suppose. And looking forward to meeting you lovely people. Image

She has a lot of underlying things wrong including fibromyalgia, arthritis and balance problems, but since last summer she's also been having operations to fix torn tendons in her arms. Until they get some strength back (they'll never be "strong") she can't cope with anything - washing, cooking, getting dressed, basic everyday things.

We have no close family left and everyone else is so distant (location- and emotion- wise), no money either, and since our wonderful, wonderful government changed the law and our council stopped providing free social care for all but those with "critical" care needs, I didn't see any choice but to quit a job I loved and move to be her live-in carer. I was promptly rejected for Carer's Allowance and it took 8 months for them to admit they made a mistake and start paying it, so in the meantime I got into debt having to pay the rest of my contract on a flat I couldn't live in.

I could accept all of that. What makes it way more teeth-gnashingly difficult than it needs to be is my mum's attitude to everything. Despite being housebound (and in a sling for most of the last year) she loves to give visitors the impression that she's fine. Once visitors have gone, she turns into a completely different person. She admits she "puts on a show" and it's really only me who sees how badly depressed she gets. When she's down she's very forgetful and gets quite volatile and aggressive over little things.

She's never accepted she can't live a normal life, so she keeps threatening to do things that she knows aren't safe, like going places alone, crossing roads, carrying heavy shopping, etc. In the past she's fallen over in public, and even fell over cleaning behind the fridge (damaging her knee). She can't be trusted to be left alone for long. For the last few years I've had to take time off work if she has to leave the house, purely to steady her and keep her safe. She's been offered council transport but hates the idea because it "takes too long" and she doesn't want to be with "geriatrics".

She calls out at night for painkillers etc and it would all be easier if I could sleep properly - I'm waiting for the results of a CT scan to see what's causing shooting pains and pressure in my eyes when I lie down.

It's been tough dealing with this for years when nobody sees the real picture. This last year has flattened my confidence and made me pretty isolated. The more I have to keep turning down invitations, the less invitations you get.. seems to be the way for most carers. I've finished a Master's degree and been asked to carry on for a PhD but there's just no way I can go anywhere in life unless there's some drastic change. I'd love for my mum to improve by a decent amount, or even just to realise her limitations, but I don't see it happening. We're waiting for a new care assessment and carer's assessment but Social Services have never been much help.

I'll stop moaning now. Thanks for reading if you've made it this far Image
Hi Ianopolis and welcome

I am fairly new here too and I would like you to know that every one is really welcoming and friendly. I'm 35 and a live in carer for my Nan I can sympathsise with the isolation and the change in personaility from your Mum, my Nan gets like that with me, I supose its because you are so close (although it may not feel like it at the time!). I find it difficult to have a social life and this forum is helping as an outlet and to feel not so alone. Do you friends visit you at home? I know my Nan is better if my friends come round and she can join in.

There is lots of useful advice as well so have a browse - its helped me.

Take care Image
Hi Ianopolis...I made it this far, easy! Image sorry life is so tough for you at the moment. I know sometimes it can seem like the proverbial tunnel with no end in sight. I'm not sure I have much practical advice to help other than to assure you that there will be many people on here that will completely understand your situation. Sometimes just sitting down and "chatting" about things can help and that option is always available here.

Pop in whenever you can....Roll Call (carer to carer section) is always a good place to find someone to have a chat with.....a bit like meeting up in the local cafe!

Bell x
Hi Ianapolis and welcome Image
Thanks all!

Sorry to hear about your situation, Henny. I know it's not easy when a loved one is so changeable but as you say it's because we're close to them. I have visits sometimes, it just stresses me out when my mum acts like she's fine around them, because some of them don't see through the facade and think I'm exaggerating. (And as soon as people leave, it's back to complaining, usually about the people who've just left!) You're right though, this site looks good for talking to people on the same wavelength. I'm glad it's been good for you. Just letting off steam definitely helps sometimes.

And Brindleboy, I'll try out the roll call, looks good... I'll take the plunge sometime...
Welcome from me too. I feel for both you and your mum. I did a degree as a mature student, just loved studying, would have gone further but for my own caring responsibilities, I was offered a dream job but I had to turn it down because there was no care available for my son. Now, at 60, I'm full of regrets about what might have been. Don't end up like me. I have had two knee replacements, so I know something of the painful existence mum has to endure. I have a mum who says her eyesight is good but is developing cataracts and cannot read the titles on the TV screen! It's going to take a while to sort out where you go from here. Start with keeping a simple diary of what mum can/cannot do and how she puts herself at risk, and anything else which might be relevant for the assessment. Your assessment should be done without mum being around, so you can talk freely. Think about what both you and mum would like the outcome of the assessment to be. Do you want to complete your studies, a job, work, and family of your own one day? In time, it should be possible to find a long term solution to your problems. Before the SW comes, have a word with the Carers UK helpline about what your mum ought to be entitled to in the way of both services and benefits. I've made a few assumptions in writing this (Yes, I know they can be the Mother of all Muck Ups, to put it politely) they may not be appropriate, but I just wanted you to know that you can't be forced to care for mum without any support services. Hope this helps in some way.
Hiya and a warm welcome to the forum.
Hi and welcome to the Forum.Hope you find it useful and fun.Just one thing to say.......never forget that you have a life too.As you said,suddenly you are 30!!! Image Image Image
Hi ,
Just wanted to say hello and welcome, nice to have you with us.
Take care
Thanks all!

Bowlingbun, those are good ideas (your assumptions are all right!), a diary before the assessment might help and also get the point across better. Her knee is very bad and likely to be the next thing operated on, so as much as I'd love for her to be able to stay in her own house, she might never be able to without another person's support again. If there is a long-term solution (sheltered accommodation has crossed my mind if she doesn't get better) maybe I can start thinking about my life.. as it stands I can't imagine having kids because I've had a dependent for so long already. Not sure where the years went! Sorry to hear about your situation, too. And your poor mum. I'm glad the forum's been good for you.

And Audrey, that's a good point, it's easy to do just to avoid awkwardness. I do do it myself sometimes but most of my friends do get the gist of what it's like. That doesn't always apply to people in general though..!

I'll try the Carer's UK line and get preparing. Thanks again, you are all lovely Image