Jess's story: "the feeling of isolation crept up on me"
One of our members, Jess, 60, tells how caring for her 96-year-old mum took such a toll on her life that she felt totally cut off from the outside world… until a post on the online forum changed everything.
Mum has been housebound for around six years, falls a lot and short-term memory loss is beginning to kick in now. Up until now I've been able to manage by coming to her house in Kent - which is about 35 miles away from me - at weekends and a couple of nights in the week. But she's been in hospital for five weeks after a fall and is now in a rehab home, so we're discussing whether she goes back home or into residential care.
She's occasionally had care-workers after she's fallen over and ended up in hospital overnight. Usually after a couple of weeks she tells the careworkers not to come back, and I'm on my own again.
I feel that mentally I'm on call 24 hours a day because I'm worrying what's happening if I'm not there. I lay awake at night wondering when I'm going to get a call in the small hours. Then I'll often ring her and she doesn't answer the phone, so I'll drive 35 miles to find out why and she'll say she just didn't hear it.
Over the years it's taken a huge toll on me and my husband. We used to go on holiday a couple of times a year but we haven't been for years. And my husband has practically been living at his mum's recently, caring for her as she's 92 and frail. On the rare occasions we're in the house together, all we do is talk about 'the mothers'.
This is the time of life when we thought that within a couple of years we'd have bought the rest of our nice bungalow and settled down to some peace. But that's not going to happen.
The feeling of isolation crept up on me when I started to lose friends because I was never free to go out with them. I used to go to music festivals and nights out with friends but if you keep saying no, in the end they just stop asking you. So they're all off doing things and I'm sitting with my mum on a Saturday night drinking tea and I can't even have the TV on because she doesn't like the noise. It's a horrible feeling.
What added to the feeling of isolation is that my mum only has two living relatives - one is her 89-year-old sister who lives abroad and the other is me - so I have no one else in her family to call on. I felt so alone and cut off from everyone and everything, like I was the only person in the world this was happening to.
Mum had to go to hospital after a bad fall, and was just assuming that I'd be going to live with her (35 miles from where I live and work) to look after her when she came out. I was desperately worried that I'd have to give up work to look after her and I just couldn't - with my husband only working one day a week, it's only my salary that's paying for us to live. And my work was one of the only things which anchored me to reality.
I was on the verge of going to the doctor's and saying I couldn't cope - I just couldn't tell anyone about my real feelings because I felt they'd think I was being horrible. Then I discovered Carers UK while I was searching online for someone or an organisation who could tell me how the hell to cope.
I remember reading a post on the online forum - from a lady called Joan - and it was a lightbulb moment. One of the things that resonated with me was when she talked about her mum being manipulative. I've been manipulated for years, even though I consider myself a strong person. I was practically jumping up and down for joy because I'd found someone else who was in the same situation and I didn't think they existed.
Up until I read Joan's post I felt guilty that I couldn't make everything right for mum and bad that I was even thinking of putting her in a care home. I'd never really spoken to anyone with caring experience before - all I'd heard was 'oh, but she's your mum, you've got to move in and look after her, she needs you, what choice do you have?' etc.
After reading Joan's post I typed up a response explaining my own situation and all the feelings and issues I was struggling with - not really intending to post it. But I did post it, and I'm so glad that I did!
I arrived home later after a rather stressful hospital visit and thought I'd read a couple of posts on the forum - and there was shedloads of support! I was beaming from ear to ear. I'd been feeling horrible about being angry with mum sometimes, but I'd been bottling that all up. It was only through talking to other people on the forum in the same situation, that I realised those feelings were natural.
After sleeping happily knowing there were so many people offering support and understanding, the first thing I did was to print the whole forum thread out and highlight the bits I found most useful, the bits that made me feel ready for the fight, and the bits that really made me laugh. I actually kept a copy in my bag so whenever I had to stand up to anyone and felt a bit weak, then I could take a loo break, read it through, and go back in fighting! Now I understand, thanks to reading other people's posts and talking to them on the forum, that we do have the right to draw our own lines. I really did appreciate every word. After I read Joan's post and others, I put up messages thanking people because they'd pulled me out of a hole and they probably didn't even know it.
Now I use the forum to let off steam when something's bothering me and I get such good information and encouragement from people who've been through it all before that I really feel like I'm sharing the load. Instead of sitting there with my head in my hands I go away with a practical solution and I feel there's lots of people on my side now. Before, I felt no one was on my side.
The great thing is that now I'm in a position to offer encouragement and understanding to other carers, and that feels good.
Being able to share the humour - albeit black sometimes - that comes with caring has also been a fantastic boost. I've never laughed about my situation until I discovered the forum and saw some of the comments. They can be wickedly funny and things only a carer would understand. Now I feel on top of things because I feel I might possibly win the fight to care for mum without losing who I am - and that's largely down to support on the forum.
Without it I would definitely have been forced to take time off work with stress because I had no outlet for my feelings. Something had to give. Now if I've had a bad day with mum and am feeling frustrated and low, I'll come home, jump onto the forum and, reading other people's posts, I'll feel more able to cope.
This article first appeared in Caring magazine issue 38. Packed full of news, information and features on all things caring, the magazine is out four times a year for Carers UK members.
To get your copy of Caring magazine and get access to our friendly online forum, join Carers UK now.