Struggling to cope with my mum's care

Carers' health and wellbeing
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I know my problems aren’t as severe as many other people on this forum but I was just hoping to get some advice or support.

I’m 20 years old and I live with my mum who has lymphodema. Her legs used to be dressed at her gp surgery 3x a week until she got sepsis. How the nurses didn’t realise they were infected, I don’t know. She was in the ICU for 2 weeks, needed dialysis, and then was in the hospital in other wards for 3 more weeks. After she got out of hospital, her mobility was significantly diminished and she needed a lot of support.

While the hospital discharged her with a care plan in which a carer would visit every morning and evening, I still had to do everything in between and I’ve been having to do all the housework since before this all happened as well. After the care plan finished, all the caring responsibilities fell onto me and it was really difficult but she made a lot of progress and we had gotten to a point where she didn’t need much support anymore.

Unfortunately, despite looking like they were close to being healed, her legs became infected with MRSA about 4 months ago, and it feels like the NHS isn’t really doing anything about it. She’s been on a preventative antibiotic since the sepsis, but they also tried her on a bunch of different antibiotics to the point where they didn’t want to try anymore for fear or antibiotic resistance. Online, it says the standard for MRSA is to administer them intravenously, which both my mum and her gp mentioned to the hospital on countless occasions, and yet they never tried it. Since then, they’ve done nothing to treat the infection apart from keeping her on the original antibiotic and giving her a special shower gel (which has been and gone long ago).

Her legs are weeping around a litre of liquid everyday, meaning I’m having to change her dressings at least twice a day and her gp surgery will only dress them twice a week (less than before?). The district nurses refuse to get involved because she can still drive, but her mobility is decreasing day by day due to the excruciating pain (they’ve prescribed her morphine). The pain is so severe that she can’t have one of her legs in bed because anything touching it is unbearable; it’s been detrimental to her sleep and has even got to the point where she can no longer shower. It’s becoming incredibly stressful because it feels like they’ve left her care, which I feel is complex and needs specialised help, up to me. I feel completely out of my depth, like I can’t help her and that no one wants or cares to help either of us. And having to dress her legs as she winces and wails is just so hard to do as her daughter. It’s really getting her down and it’s horrible to watch it happen.

I’m constantly brought back to the thought of what would happen if I wasn’t there? I feel like I can’t do anything with my life because who will care for her if not me? It’s kind of depressing because I haven’t been able to do anything since I left school. I messed up my a levels due to severe burnout and I needed a break after school (I suspect I may be autistic) so I didn’t make any plans. But during that break, my mum got ill and it’s just been a saga since then. I basically have no friends, my sister is an addict currently relapsing and unable to help, my mum’s mum is an elderly amputee with brain cancer, and I just don’t know what to do anymore. My life and my mum’s life have become so unfulfilling and it doesn’t matter which professionals we plead to, they say they can’t do anything to help. I can’t stop thinking about the fact that this is a symptom of over a decade of poor NHS management and therefore won’t improve anytime soon and it’s so depressing that this is the standard now. I live near one of the best hospitals in the country and this is the standard of care?

Another thing that I forgot to add, I can’t get carers allowance either because when I tried to apply it said that if I’m granted it the person I’m caring for could lose certain benefits or tax exemptions. My mum is exempt from paying council tax due to her bipolar and wouldn’t be able to support me and would struggle to support herself if not for that fact.

1 Like
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Hi @Pepsimax, welcome to the forum. First off you should not be denied carers allowance but are you able to get universal credits? I would suggest that you emai or speak to the carers helpline for further information and advice but also citizens advice. As for your mums health, she could do with a a social worker to help with a new care plan. I would speak to the GP and explain to them what is going on and say that you don’t know what you can do anymore for your mum health but also you are in crisis. Ask for a OT visit and for physio to also help out. Apart from asking the carers helpline and citizen advice, I would suggest that you speak to the red Cross, salvation army and maybe crisis who might be able to help. Has your mum got any help from mental health? If not, get them involved but they might be able to help you out with carers allowance.
All the best
@Melly1, @Charlesh47, @susieq, can anyone be able to help

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Hi @Pepsimax
Welcome to the forum.

Your caring situation sounds very stressful and complex and your poor Mum sounds like she is suffering too.

I suggest you copy and paste your post in to an email and send it to the Carers Uk helpline advice@carersuk.org
They will be able to advise and/ or signpost you to those who can.

The GP should be able to prescribe the shower gel that your Mum was using until it ran out.

If her pain gets too much or her legs worsen then I suggest you ring 111 or take her to A&E.

Does your Mum have outside carers visiting to help with her care?

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Welcome to the forum. I am absolutely dismayed by your post. It is absolutely dreadful that you have been left to deal with all this with no support, practical or financial. Is mum getting highest PIP for care and mobility? It’s really important that you claim Carers Allowance so that you start building up National Insurance Credits for your own future. I expect mum will be getting an extra element of benefits as no one is claiming CA for her. So if you claim CA mum will lose that, but you will gain it instead and also claim other benefits in your own right, so the household would be better off, not worse off! Our Carers UK helpline will be able to do a full benefits review for you. I’m a pensioner now, but when I was in my teens mum had dreadful issues with ulcers on her legs, I was horrified by them but the only relief she found was me massaging them one leg at a time. Towards the end of her life she had MRSA. Are you aware of MRSA Action? Your mum’s situation is so much worse. Has mum had a recent Needs Assessment looking at the support she needs? Have you had a recent Carers Assessment from Social Services? I’m dismayed too that your education has suffered so much. Hopefully you will be able to find a way to put this tight. I have an Honours degree in Business Studies, a special course designed for mature students, one day at college with study at home. How much support are you expected to give to your sister and grandmother?