To ask what keeps you going as a carer

[CazY777]

I've been a SAHM for 2 years now looking after our 3 year old, and in the last 6 months I've become a carer for my DH. Prior to that I worked full time in the same industry for over 20 years so I got to a fairly senior level. I left work due to sleep deprivation and bullying at work. DH's condition means that he has difficulties with washing and getting dressed, lifting things and increasing problems walking, he's started falling over more and he's in pain most days. He's seeing a consultant, who has already said that he is likely to need an operation, but the aim of the operation is stop it getting worse, it could get better but it depends how much damage has been done.

I know I'm the lucky one here, I have my health, and I'm prepared to be told that I am unreasonable, but I'm so bored of being at home. I need to get a job really, but I can't see how I can at the moment and how are we going to deal with this if the operation doesn't make things better? DH is bored and frustrated, he was working full time up to a year ago. And how are we going to live long term on UC, carers and PIP? I've started volunteering one day a week but I've already had to cancel twice to look after DH, so how can I reliably do a job? It is better when our DD is at nursery, as I have time to exercise and do DIY projects on the house, but I still think I need more.

So, what keeps you going as a carer? Do you work, if so how do you manage it, if not what do you do to keep your mind occupied? Just hoping to get ideas from other people's experience. TIA.

Love keeps me going. But sometimes it's tough.

The hardest part about sustaining a job, whether it's from office or home, freelance or employed, is exactly what you identify: it's almost impossible to be a reliable employee, because the needs of caring aren't predictable, lots of appointments come up, etc. Sorry, I don't have useful advice. But I know how you feel.

For me the only other option was a residential setting so that keeps me going . Mine is easier in that it is my child and DP can still work. But my own health is deteriorating quickly with sleep deprivation and physical violence, and yet people still comment that I could manage a job as well.

Thanks, maybe I'm going to have to accept that working is going to be difficult.

No advice but I'm in a similar situation (not my DP other family member) I feel like I've lost my entire identity and it's shite.

Ironically my "real" job was as a carer which I loved.

I hope your DP does improve.

Having something thats all mine

Can you work and pay for care? Might work out more cost effective if you were in a senior position.

Could you look at carers coming in for dh so you could work? My cousin love his carers as they are different faces and gives aunt a break

I have done this and it is the hardest thing I have ever done in my life. The only things that kept me going were having work I could do at my own pace, in my own time, eating the right food and getting enough sleep. I also think the worst advice on this subject is to not worry about letting the housework slide. That could be fine for some people but an untidy house would make me feel anxious and create a problem I didn't need. Keeping on top of cooking and cleaning made me feel like I was winning, even if it was incredibly tough going.

Hope that helps.

I was senior for my industry but it's not that well paid, I was on £28,000.

I've had to quit work to care for my son. He's not even got a school place at the moment so it's constant.

I feel very despondent about having to scrimp and survive off carer's and his DLA long term. Up until him being 13 I'd managed to keep working too but I had to admit defeat last year. I then on the flipside also worry that if I did go back to work in the future I've been at home with no career progression or educational/training progression for all this time. I feel very down about it all at the moment.

It used to be that work kept me going. The juggle was worth it for our finances and for my mental health. Now I can't do that the only thing keeping me going is knowing my DS needs me and without me he'd be in a much worse situation.

I'm not good at letting the housework slide either, but I do find it so tedious!

YourHandInMyHand, that's how I feel too.

I love Mr Willowkins is the first thing. From a practical point of view, I care for my DH plus have 2 teens so my part-time job gets me out of the house and gives my mind a different focus. It helps that my employers are extremely understanding and let me work flexibly.

It is my child that I am a carer for and I do it because I believe at the moment it is the best thing for him. The only other option would be a residential placement but I think he is too young yet. There is no childcare for children like him. I don't have the mental and physical energy for a job and it would take time from time with my partner or as a family. What keeps me going are the happy times as a family.

Does he need you with him constantly?

I take my hat off to you all. I was a carer for my mum. As I was unemployed at the time it made sense (but buggered up my CV no end, even when I explain in interviews why the gaps, I know they think negatively). It can be hard. I used to to haul her out of bed on my own and wipe her bum - not easy when her legs keep collapsing under her! Eventually we got some helpers and I told them it might be easier now if she gets 'washed' on the bed and wear incontinence pads. She had a hoist too.

But the hardest thing was that I was in denial. She had been in remission. I got a bit angry when she wouldn't eat. I took it personally. Still, no point beating myself up now about it!

Deathraystare, sounds like did everything you could for your Mum. My DH doesn't need that level of care, he doesn't need me with him constantly but I worry about him falling over. One of the hcp's scared us recently by saying that if he suddenly becomes paralised that we should go to A and E! But she wasn't an expert on his condition. But, I worry about this now happening, and things are complicated also by our daughter being young and only at nursery in the mornings.

I do it because there is no other option. I couldn't leave someone I love dirty or hungry or in pain.

Sometimes the hope that his condition might be cured during our lifetime get me through (it is possibly a vain hope).

Love. No other option. Would never not do it for them.

Different situation for me as it's my child. She is still very young but will need life long care and I often wonder how I will do it for the rest of my life but I know that I will. As long as I am able, I will, because I love her and she needs me.

I am sorry you are having a tough time. I at least have my husband to share some of the load. I work part time but rely on my Mum for her care then which realistically she can't do for too much longer.

Love, but it's a hard road. Judgement from others, isolation, not having the strength to explain to people so I avoid them and the conversations I might have. These are are the main killers.

My advice is to make as much time for yourself as you can. Do that Pilates class, go for that swim, have that coffee out, read a book. Don't feel guilty. You have to fill your tank daily to be able to keep giving out.
Xx

I'll come back to this later but what I
Want to say now is that you aren't unreasonable at all in feeling like this. Caring for anyone is incredibly hard. Caring for a spouse has the adding complication of the changes it brings to a relationship.

Please don't feel bad about your worries.

Thank you everyone, I appreciate all your words of wisdom and sharing your experiences.

It's hard, you're allowed to feel that it's tough, without guilt.

We all wish for happy healthy family, so it's ok to lament when it's not that way.

I do this for my child. I love them unconditionally.

The lines between mother and carer are very blurred. There's alot of overlap. Makes it easier to do the role in some ways.

We have different expectations from a spouse. I think that makes it different/harder in some ways.

I salute all my fellow carers x