Fibromyalgia Action UK
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Looking after my Disabled Brother

Hi everyone. Its been a while since I updated on how things have changed due to my Brothets wife leaving him. For those who dont know he fell down 4 stairs 5 yrs ago & broke his neck. 3 ops later he was left paralysed from the neck down.

My Brothers wife left him 4/5 wks ago. His carers have even said they see a difference in him, its like he's happier now as though the stress has left him.

Mum & I take our turns at looking after him. Mum doing more than me. I did go & stay with him for 10 days while my son was on holiday & to give Mum a much needed break. However, half way into my time there I took a Fibro flare. All he does is watch any type of sport he can. After a while the noise was grating on me & I was becoming very grump, snapling at him & in so much pain. I took to bed sometimes oversleeping meal times. I must have looked bad on Friday cos my Mum called in & said to me privately she thkught I should go home because I need to take care of myself aswell. I told my Brother kn Friday night I was going home the next afternoon & he said "Thank you for being here, I know its hard for you too having Fibro even though I dont understand it" That gave me such a lump in my throat.

On Saturday afternoon upon closing his door I felt so bad. I felt like I was leaving him & cried driving down home.

I have been suffering with pain & IBS. Now I am feeling very low & cant stop crying. I know the advice will be speak to your Dr. I really dont want to coz there is not much they can do as I am already on a higher dose of anti depressants than a GP is allowed to prescribe. I am on my dose because I was seen & prescribed by a Physciatrist.

I've cried all day. I feel so down & in so much pain. I dont want to tell my Mum as I dont want her to worry about me. I txt my friend today & told her but no reply. I txt my cousins who replied with I know its hard.

I dunno am I looking sympathy or do I need help. I dont want to go on any more. This is not a life. Like my Brother we are just existing!


24 Replies






Thank you Yingtonlady. Much appreciated.


Jackie xx


Please don't feel guilty.. I had to make a decision a year ago... My mum lived with us but kept having falls I couldn't lift her and she wanted me to spend all my time with her if I went to the neighbours I got the Spanish inquisition after it got too much I was having flare after flare. After much discussion with my husband and mum we found her a sheltered flat in housing block. Now she is never in has days out quiz nights and a better social life than I do... I know that this isn't your brothers situation but like you I didn't know how happy she was going to be but had to step back for my health plus the impact it had on my husband and son. I know you will feel guilty even when told not to, but please step back and think of your health .. You have deserted your brother you tried your best and that's all anyone can ask of you

Hugs VG xx


Ahhhhhh I meant to say YOU HAVEN'T deserted your brother.... Sorry sorry sorry

VG x


Thank you VG

It must have been so hard at the time to come to that decision, little knowing it was the best one all round.

I'm delighted your Mum is happy & in turn it makes you happy. It gives you the time to dedicated to yourself & hopefully your hubby & son can help care for you.

Thank you so much for your support when I felt I needed it. I had an uncontrollable emotional day yesterday.

Mum texted me last night saying she was staying with my brother as he's not been well all day y'day. Thank God I did'nt ring her telling her how I felt.

Luv & Hugs

Jac xx


Hi Jackie I know how you feel in a way !!

I looked after my mum till last april then she took ill ( perforated bowell ) and was not well enough for an op. The hospital took her off all heart meds etc and put her on the liverpool pathway and said she had three to five days to live. She never moved for 5 weeks we just wet her lips with water. Then she woke up and asked for a cup of tea. Gradually she recovered to a degree ,but I had to admit I could not look after her anymore,and she is now in a home I made myself very ill looking after her and my fibro flare is classed as acute by the Dr's.

My reason for telling you this is for weeks I used to leave her after visiting and cry because I felt I had let her down....I hadn't Like you I had done as much as I could do...

My lovely you need to look after yourself as you can then help your brother with your mum. If you don't ease off on your self you will get really poorly and not be able to help your Mum at all......I pushed myself so far that now I am having to be cared for !! and I cant even visit my Mum as some days I cannot even get dressed let alone get in the car.

I think you and your mum are troopers to be looking after your brother ,I remember when you told us about his wife leaving him ,and it was very sad but the best thing she could have done for him really because it sounds like he is much happier.

Be brave !! and look after your needs and give each other a healing hug from me . :-)

Rainbow dancer x x x


Thank you Rainbow Dancer

It so hard when we cannot do everything we want to do for our loved ones.

God bless your Mum, my heart goes out to you all.

I know I need to give myself a break & rest in order to get back up again & help Mum a bit.

Thanks so much for the support I needed so badly yesterday as I felt so low.

Luv & Hugs

Jac xx


Dear jackie

you've been too strong for too long for your brother and your poor body can't take it. Having a good cry can help release the pent up emotions so it is not necessarily a bad thing.

Your mum is a star, personally I think you and your bro need carers to share out the work more evenly.

Best wishes to the three of you xxx


Hi Julie

Thank you for your support. You were right I did need a good cry & I do feel better for it but if a stranger looked at me this morning they'd think I'd been in a fight. My eyes puff up to nearly closing now when I cry lol.

His health care workers came out & he now has extra carers come in & turn him at night.

His carers come in 5 times daily, they are fantastic caring people, he is lucky that ones he has are really nice & caring to him. They do all the hard work, all Mum & I do is feed him, empty his cholostomy bag when needed & give him his meds & drinks. He is a good patient.

I think what triggered me off last week was the constant continuing noise of sport on the Tv all day everyday. At home I rarely have TV on except to watch the news or a drama that would take my fancy. I used to be a soap addict but the noise from tv & somethings if I am out really gets to me.

I am feeling sore & emotionally/mentally exhausted so I will be spending today in bed. Only getting up for the loo.

Thanks again for your support & advice.

Luv & Hugs

Jac xx


Hi Jackie, as the others have said, you need to be kind to yourself. Your brother clearly appreciated what you did for him and understood why you were a bit out of sorts. You need to pace yourself with this illness and out of kindness to your mum you probably wore yourself out. Try to rest as much as possible to allow your batteries to recharge and then go back to working a rota with your family if you feel up to it. Just make sure that you are getting as much help from social services as you can, and want,to relieve the situation. Your brother might have to give further thought to the feasibility of staying in his own home, however heartbreaking that may be. As VG says, it might even turn out for the best.

Keep us posted. Lots of gentle hugs to you. Jane x


Lol I do things like that all the time. Yes things & new adapted dwellings have been mentioned to him. We dont like to go on at him. He must have so much going on in his hrad. Also there is a phase for disabled ppl right behind where my Mum lives & they even have a warden to check on them. There is a big waiting list but I would imagine he would move up fairly quickly. He will make up his mind to do the right thing I think when winter kicks in & everything becomes harder re: maintaining his house.

Thank you for your support, it is greatly appreciated & he is an east patient to look after. We just have to feed him, change his cholostomy bag & give him his meds. He has carers come in 5 times a day who do all the hard donkey work.

I am just feeling so low & lonley in myself. Maybe I'm being selfish I dunno. All I do know is I dont feel right at all.




Thank you all for your wonderful supportive replies.

I will reply to you all individually when I get this crying out of the way.

Hugs to you all

Jackie xx


ehy sorry please dont cry you are looking after you really ill brother and coping with the aftermath of his life.and then on top your dealing with your own personal probs,

your be heading towards burnout and thats worrying right now.what good are you to your brother if your laid up or really ill with a flare up again.

you can only do so much right now and there only so many hours in the day for all this.

were all here for you and you need someone to speak to and even if its just for crying please dont cry on your own.

its all the extra stress.

im glad your brother seems happier though.x


Hi Sammi

Thank you for your supportive message. I love this site for the help & support given by people like yourself.

Your right if I dont do as I'm told things could get worse. I had a good cry & ldt my emotions out after I made this post. Since comin home from my Brothers on Saturday I have'nt properly rested.

Today I will be in bed all day coz I am sore, emotionally/mentally drained & not going to think about anything worrying.

Thank you Sammi for your support I know you are having a hard time yourself as I do read the posting every morning as they are sent to me via email. Keep going & stay strong.

Lots of luv & hugs

Jackie xx


Hi Jacs

Aww so sorry to hear it isn't going too well. I thought you had sorted things out as far as your brother went and have been sharing his care with your mum. You sounded so happy, like you had sorted out a plan and didn't he go to your mums for a bit.

Please please don't feel bad about crying, I find it a great release. Lets face it my love you have been put under a lot of stress with what happen to you brother, anger at his wife going, guilt at not being able to help your mum and your brother more. You have probably reached the point where it has all just got too much BUT just remember the only way is up now. Take some time to recover yourself and yes if it means going to the doctors, then please go.

Small steps but you can do this, get back on track slowly. You know we are all hear for you as is your mum and brother. Come on smile for me??

Massive Piggie hugs xxxxxxxxxxxxxx


Hiya Pinky

Thank you for your reply & support. Yes Mum & I had got into a rota the my Brothets wheelchair broke & has been taken away for repair. He got a replacement loan one which is only good for getting him around the house.

I only went up to stay with him for a wknd to give Mum a couple of days off but as my son was away on holiday I thought I'd stay longer as we'd be company for each other & in turn giving Mum a holiday to recharge her batteries. At the beginning I was feeling not too bad fibro related as my meds seemed to be doing their job. Then it all came crushing in on me. I only have myself to blame.

I know I do need to pace myself & since coming home on Saturday I have'nt been doing it. However as yesterday was so bad I am having a day in bed coz I am sore, emotionally/mentally drained. However I also feel guilty about spending too much time in bed. Its a vicious circle this illness on how it makes you feel in your head aswell as how it makes our bodies feel but today I dont care.

Thanks again Pinky.

Luv & Hugs

Jackie xx


A lot of your emotional upheaval will also be the absolutely normal reaction of coping with a crisis, putting things in place and dealing with a bad situation. Things are working out so your body has made you take a step back and react. Once emotions have settled you will get your emotional strength back. So for now cut yourself a little slack, take the time to do things for you. Be kind to yourself. Heal.


Hi Cat

You are spot on. Yesterday I cried all day & got it out of my system.

Today I am letting my sore body rest by staying in bed. Although I will feel guilty about it but it needs to be done. I am too sore to do anything.

Thank you for your support, I really did need it.

Luv & Hugs




I want to say a huge massive thank you.

I know everyone has their own problems & worries.

I find when I need that bit of extra support even though its only in the form of words from people I've never met I truely & honestly appreciate you support given to me when I needed it yesterday.

Again, everyone thank you so much

Jac xxx


Just glad you are on the up and a day in bed sounds perfect and don't you dare feel guilty!

Piggie hugs xxxxxxxxxxx


Thank you Pinky. I did exactly that & doing more of the same up until about 4pm today.

Its my 50th Birthday today & my son gave me a lovely card sayi g he hoped my pains were pk for Friday as he's booked us into a beautiful restuarant in town for dinner. As much as I can see it far enough I will get ready put my happy mask on, go & enjoy as best I can.

I booked myself an Aroma Touch Technique massage for tomorrow. Its done on your back with special oils for trigger points & finishes of at your feet working on all your points like reflexogy. It lasts for an hour & sounds like heaven to me. Google it or watch a demo on YouTube.

Thanks for everything Pinky.

Luv & Hugs

Jac xx


Belated birthday wishes Jac, I was 50 in March too 1962 was obviously a good year lol. Hope you managed to enjoy the restaurant treat x

It is not surprising you had a meltdown, you have had a bad couple of months trying to lookout for your Brother which has been both mentally and physically exhausting for you. Staying on to give your Mum a break was a lovely idea but you just pushed yourself over the edge. A lot of people on here have trouble with too much noise. It is good that your Brother is obviously feeling happier with his life and that will have a knockon effect on you and your Mum, you just have to remember to pace yourself a little more. Hope you are feeling more like yourself now xx


Thank you Lynne

I stayed from Friday a'noon until 5ish today when I phoned Mum to ask her if she would come & do him when carers get him into bed. I forgot to take mh Amytriptalines on Fri & St. Saturday was a hard job as his electronic wheelchair has been broken for oast few wks & thry are only coming out to fix it tomorrow. Mum & I had to struggle getting him into his adaldd car for the wheelchair he hss. It was hard work. Docs was opened yestrtday for flu jabs & Mum & him had to go get theres.

It was a nightmare getting him in & out 4 times in total & the wheelchair was not secured as it should have been.

I needed Mum to take over this evening as I felt so sore & my head is busting. When Mum came down she too looked burnt out but then she does'nt rest when she should.

Tonite not so long ago I got a phone call to say we have to take him to the Chiropodist at 10.30 in the morning so thats gonna be the same procedure as yesterday. Only I will have to do it on my own as they are coming out tomorrow to fix his electronic wheelchair & Mum will have to sit in & wait on them.

My brother wont let the appointment be cancelled as we had to cancel it before & hes affraid they will stop doing him.

Its gonna be a long hard week. I also have to flow Mum down to the csr dealers as hrt car has been called in. Its something to do with the paintwork. Then when they've done wigh it I will take her to collect it.

I just wanted a day to myself when I could have a lie in & rest up. Not looking like its gonna happen at all this week.

I am getting myself worked up & I know I'll not sleep. I feel rotten, worryin about Mum & alll his car things. He does'nt want Mum to drive coz he thinks she is a bad driver (so do I if I'm honest).

My son is moving out next week & I should have bedn starting to enjoy a stress free life with him away & not have to work at cleaning up after him but now been lanfed with this with my brother. I should'nt complain but I want my life & feel guilty about that. I feel guilgy everytime I leave my brother too.

STRESSED is how I'm feeling & emotional right now.

Thank you.

Luv & Hugs

Jackie xxx


Sorry for all my mistakes as I am using my phone & I cant see all of what I key in :-/

Jackie xx


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