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Fibromyalgia Action UK
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Who care's for the carer?

Hi all, I have been a carer to my husband for over 20 year's now, after a half ton oil tank he was delivering fell on to him and crushed his spine. The immunologist thinks I have had both Fibro and M.E for a long time, but it's got worse since last year when my husband fell over and in my haste to help him up I positioned my feet wrong and managed to trap 2 nerves in my lower back and 1 in my neck. I'm sorry this is a bit of an epic tale but I'd like to know if any of you are carer's and if so how do you cope?

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Hi Pita, I am not a carer but I imagine it is an exhausting job with little sympathy. I spend as much time as I can each week (which isn’t much) with my ex MIL as she has dementia, as much to give her a focus as to give FIL a rest. It must be so detrimental to your health, maybe even brought on fibromyalgia. There is a big local carer’s support group in our area, have you looked for similar in yours. It is also possible to get respite relief through social services, I apologise if I am saying what you already know. Hopefully someone more knowledgeable will answer shortly. All the best

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Hi Shazzzy, I didn't even realise I had a problem until my husbands OT asked if I knew that I didn't walk in a straight line, and I don't even drink alcohol, Lol. It can't be easy for you either, dementia is a difficult thing to cope with, my Dad had it when he was in his 60's and sadly didn't know who I was when he died 3 years ago.

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Hi Pita, my granddad had I too and the last year of his life he thought I was his daughter, my mother.

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Hi sorry to hear your having a bad time.

By the sounds of it you should be having a carera for both of you.

Have you thought about asking for help yourself, ask at your welfare rights you might be surprised, take care.

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Hi Newquay, Thanks for the suggestions.Trouble is I am so used to caring for other's and keep trying to do all the things I used to do 20 years ago :0)

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Yes but one you are 20 years older now two you have maybe two illnesses that could lay you up long time. When we had ME had 7 years bed or wheelchair that was it just lucky was youngish and Mum & dad to look after me like a baby again so get as much help as you can take your health troubles seriously or you will not be able to help anyone. Sorry if sound hard but people think ME is a joke but it’s not it can be hell.

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Thanks Bobby3 for telling me straight, I agree that ME is no joke but humour has helped me through some tough times.

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I am up to have a 🤣😂🤣and I am a sarcastic little so&so it helps us get though but you have to know when to get help that’s said if you can get it.

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All you will do is ware yourself totally out then where would you be.

Go and find out what if any help you can get before you are worn out.

My husband days cfc I have fibromyalgia plus other stuff, we have been struggling through.

I have just been diagnosed with breast cancer and have the gene in me so will be facing chemo and radiation afterwards . Apparently a 9 months battle and I am sure not letting my husband try to cope with me all on his own, or he will be next.

I put it down to stress. worn out trying to cope, but I give in I am going to get all the help we can.

So please go and see what help you can get. Before it's to late.

Have a great weekend

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So sorry that your having to deal with so much, I feel like I shouldn't be bothering other's as there are so many people in a much worse situation than me.

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That's what we are hear for so don't even think like that.

I was trying to point out we all need help and you should ask for it.

I am on your wave length when I was in hospital last I was ringing our son up to go and take care of his dad because you are right to many people forget out the carera and when I spoke to hubby I could tell with the tone of his voice he was upset.

Sometimes I think they need it more .

So please fire away anytime, I don't come on a lot but your message hit me and I had to reply because I feel the same as you.

Pity there isn't a Brest / cancer forum.

Take care.

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My husband has anxiety and depression which developed a year before I also became ill. I help him cope mentally and he helps me cope physically with some of the more heavy chores I used to do. When he was diagnosed with cancer last year and had to have 5 weeks of radiotherapy five days a week for the first time in my life I asked friends if any of them could help with a few of the sessions taking him back and forth from hospital. I have always been the one who cared for everyone else and it seemed strange to be on the receiving end. Some said they couldn't but others helped and it was such a relief. I wondered why I hadn't occasionally asked for help before.

Do get in touch with social services and find out what is out there. Think of it this way if your health breaks down completely where would he be. Good luck.x

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Thank you Rosewine you have given me much to think about.

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Hi Pita66. I'm help look after my mum. I went down the route of a potential diagnosis of ME, but it wasn't. So am still plodding on with no diagnosis.

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I have found that you need to keep going to your doctor and tell them about your symptoms, write them down and hand it to them if you need to. It took over 2years of different tests before I got sent to an Immunologist. There are lots of other conditions that are similar to ME, try putting your symptoms into google search. Good luck.

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Hi there, I am a carer to my husband who has Aspergillosis , I have fibromyalgia, and Osteoarthritis . The Key to

Caring and coping for me is organisation , information and knowledge , and enabling my husband as much as is possible .

I make sure I have my times of rest , also that he does something creative , so that I can do my own creativity at the same time . He does adult Lego , I knit . We no longer go out much at all , but try and bring that into the home by watching travel on tv and on you tube .

Is there anything specific you are finding difficult , ?

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Thanks Daisy55, I think the problem is asking for help, I have coped alone a long time, Iv'e brought up 3 children and am now also a carer for my mother. I don't like talking about myself much, its taken me months to get the nerve to write on here :)

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Hi Pita 66

I did things the other way around , I cared for my mother before my husband , and like you have brought up two sons . I have coped mainly alone too as it is what I have always done really . Asking for help is difficult . It’s knowing the help is there and having it there on the sideline to call on if needed.

I made sure I am registered as a carer at my Gp surgery , and also with the local carers association .

If you already have community nurses out to your husband or mother, then they have lots of information and equipment available . There are all sorts of things to help the one you care for , which helps you too.

You can also ask for a community referral from your Gp if your husband and mother need blood tests or anything else and cannot get to the surgery . I get the shopping delivered , a home prescription service , there are Opticians that do home visits , and dentists .

Stair lifts, panic alarms worn around the neck on a necklace for the one you care for , all give you some freedom . I have found all these things a great sense of relief .

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Hi Pita

My name is Carol and I am an unpaid carer for my daughter and my husband who both have fibromyalgia. Firstly I'd like to say that there is support but you have to be a registrared carer. If you aren't, go to your doctor and they can fill out a form, which goes to your local council. They will then contact you and arrange to come to your home to do an assessment. I did this for my daughter and they adapted our garage so that she could live downstairs. This helped me and my back! They can also provide support such as people to take your husband out for a day or they will come into your home to sit with him, while you go out. Some councils have a carers passport, so that if you get taken to hospital then they will help you by say sitting with your husband.

Other than that you have to ask friends and family to help. I was hesitant to ask for support but now I have got to the position where my own health and lack of sleep/rest is a problem. It's great that you are asking for help, as without us the cost of social care would be a astronomical. Look after yourself.

Happy Easter

Carol xx

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Hi Pita66 I work in care and can understand the situation you are in. I have 1 client and she knows that I have hypermobilaty, fibromyalgia aw well as a couple of other things. I am able to do the job as it keeps me going. My partner looks after me when I need to be. We help each other out as he has mental health issues.

You should be able to get help from your local council as they will be able to give you advice on where to go for support for yourself and your husband, and even citizens advice may be able to help you too.

Hope you can find the help that you need

Michelle xx

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You need to get in touch with your local social work department for an assessment You’ll both suffer if you keep going like this without help. They’ll do everything they can to keep you both at home with support. Hope you get the help you need x

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Hi

I was a cater for the first 14 years of my daughters life as she has complex needs. I asked social services for 1 day a week respite so I could go to work as I had been isolated for all that time . They said they couldn't give me that and I ended up leaving both my girls with their dad who then got full time care.

It is very difficult to care for yourself but if you are not healthy you cannot do your job. Do not make out to people you can cope. Tell them you are not coping and you need help.

Xx

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Just reading that helped me to realise that all you have to do is ask! But that is so hard when you are the one that just quietly gets on and copes. It is so very hard and in my case my lovely husband looks well and is so grateful for everything and people don't realise he is almost blind and hearing impaired with a heart condition. People talk about having a break which is so needed I am an aspiring artist so when I make time for that it is so good for my mind! But what I would love dearly is enough money to go away together for a holiday and not have the worries about money and meals and just the general grind of life. I Have to do some work to survive and run a car in a remote area but physically am exhausted with Fibromyalgia and arthritis.

I was very sceptical about forums and how they could help, well this one just did! Finding some joy and peace in everyday activities - mindfulness I suppose is so important but we need reminding of this as it is easy to get so very very tired that you see only negative things.

Hey ho - onwards and upwards I have a holiday cottage to clean for someone!!

I realised through this that maybe my wee ramblings may just in turn help someone else. Hope so...

P x

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In our prayers and thoughts daily xoxo

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Hi

You definitely need all the help you can get. Like has already been said, get in touch with your local council. Carers need as much support as the person they are caring for. Take care xxxx

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My son is severely disabled - he has severe cerebral palsy and respiratory problems - but because of the severity of his condition we do get help so my caring duties now are the paperwork, ordering etc and being here to help if the agency carers don't turn up or in a crisis. The important thing as a carer - especially when you have your own health problems is to value yourself and look after yourself. When you having to cope with a disability in the family, you are entitled to help and should push for it., though it is hard to find time and either get funds through 1)badgering the NHS &/or council for provision 2) private fundraising/ charitable trusts 3)working & earning megabucks (not an easy option in most people's circumstances) or 4) take legal action if there is a case to answer.

I get P.I.P. for myself now and use it for chiropractic and massage.

Best wishes

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I was a carer of my mum but I had to stop. I was unrealible and in so much pain I was finding hard to look after my teenaged son who has high functioning autism. I know it's different because it's your husband but you need to get social work involved. You have already hurt yourself but if it's more serious next time? What will happen then ? Who will look after your husband ? What if you both get hurt? So my answer would be you need to care of you by asking social work to help. Also get family and friends rotated in for an hour every so often so you can go out with your friends. Hope this helps x

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Hi pita not sure where you are or what’s available there but in Devon we have a set up called Devon carers which is run by the council I think and gives you lots of info, events and back up as well as free courses and stuff, might be worth seeing if there is anything similar where you are, ours is run through the doctors surgery so might be a good place to start, hope that helps and good luck

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you have so much to cope with and I agree with the advice to seek and ask for help ... respite for both of you is worth trying and will help you both. I don't really know much about how you go about it but I'm not sure there is advice out there. take care and good luck...

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