Carer for my husband what does it mean ?? — Scope | Disability forum
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Carer for my husband what does it mean ??

simone1980 Member Posts: 2 Listener
hi all completely new here, not sure what to say don’t want to sound like I’m moaning :( I am a full time carer for my husband who has chronic back pain, has a lot of bad days so spends a lot of time on bed on morphine. He also uses a wheelchair to get around.  We also have 7 children :) question is I am feeling so overwhelmed at the moment he jokes a lot about me not getting him enough stuff eg if the children have had the biscuits out how come I didn’t take them upstairs for him too ?? And he doesn’t think I’m working enough for the money I’m getting for being a carer!? So I don’t understand what is a role for a carer, I give him his medication, breakfast lunch and dinner and do all duties a wife does cleaning washing etc.....


  • craigwasgodonce
    craigwasgodonce Member Posts: 3 Listener
    Hi, I am the cared for husband of an amazing lady I call my wife. We have two children together and we have been in this situation for 6 years(ish). May I just ask what has happened and how long has this been the situation. I am asking this as everybody’s situation is different but if this is all new to you both, it will be the most troubling time you go through and believe me, it will get better. There are many processes you will go through and this sounds like the early stages to something quite new to you all. I can tell you some experienced oppinions but please let me know some more back ground. You can get through this and you are all ready doing more than you think x
  • simone1980
    simone1980 Member Posts: 2 Listener
    edited January 2018
    Hi Craig 

    of course, shaun had an accident at the gym which caused a bulging disc about 4 years ago took us over a year for to get a doctor to get him an mri by that time a lot of damage had happened to the nerves at the bottom of his back , had the op to cut away the disc but it didn’t help and he ended up being a percentage of failed back surgery. His pain and condition has worsened so much. They won’t operate again as the scar tissue is on the damaged nerves and would cause more scar tissue etc.. also has trapped nerves in his sacroiliac joint that causes his leg pain/numbness in foot. He was very active man gym/motorbikes etc.. we’ve been to pain clinic had all possible injections etc apart from op he has now been told he can only be helped by his medication so will be like this for the rest of his life this was about a year ago, he is on 1200mg Gabba, 400mg diloxatine, 200mg Mst, 75 venaflaxine, 20ml oramorph, a day he also tried to take his own life 6 months ago. He thinks he will better off not be being a burden to me. I try an explain that we wouldn’t be better of without him but he won’t see it. He is in agonizing pain all the time. 

    Simone x
  • craigwasgodonce
    craigwasgodonce Member Posts: 3 Listener
    This may sound freaky but, this is exactly what happened to me ( apart from the gym bit ) and I have literally just joined to get help to do a university course. (not something I ever thought I would be doing). I will tell you what happened soon but don't give up, this can get better. Not back to how things were before but much much better and as for what you are doing, if your anything like my wife, your already going above and beyond. He doesn't mean what he says, it is the pain. The first person in the firing line will be those closest to him. I've done all this and then some. 

    I had a microdiscectomy and it has left me with both my legs not working properly. numbness, pins and needles, muscle wastage, they just collapse under me from time to time, they don't do as there told, I can't feel them properly (to the point I may be currently wandering about on a broken foot but thats tomorrows day trip to hospital and a very random story). The back pain is unbearable and nothing seems to work. you cannot concentrate on things as there is a constant distraction with the pain. having to depend on people and feeling like a burden is the worst part, especially when its the person you love and you had intensions of being there provider and super hero. I was horrid because of this. 
    I may rant on so ask me anything if I confuse you, I do still have this condition I am just learning how to deal with it better and I have never actually wrote this down before so I may have other discoveries about myself as I write.
    I think it best to explain what happened to me as I may be able to help your husband to. I am not suggesting you do any of this and it won't stop the pain or clear your physical problems but it may help knowing you can turn this around.

    We had just had our second child in may 2011, my wife has her own shop and we were in the middle of moving to bigger premises while she was on maternity so while she was off I was going to work in the morning and refitting the shops out in the evening and weekends and grabbing as much time as I could with my little exciting family in between. In July 2011 I was in a RTA at work, I used to be a HGV driver for the local council waste dept. It caused my discs to trap my nerves and I was signed off on the sick. Me being me was not happy about this as I was a workaholic and always on the go. I tried everything but was told, which I'm sure you'll know, if any problems with bowl or bladder control straight to the doctors I go. well at the time I was just wanting to be back to me. I mean who wants to hear do nothing and don't be lifting your new baby. I didn't go to work but foolish maybe I was still trying to get on with other things and play with my boys. I the October of that year the inevitable happened. I was drilling a hole while stood on a ladder and my leg started having a massive fit. it just would not stop shaking. this went on for a couple of hours then stopped. it was a Friday night so thought I'll wait till Monday and go to the doctor. over the weekend the problems started with couldn't empty my bladder fully. come Monday told the doctor and got told to go straight to the hospital. so stuck in hospital waiting for an op, has the operation on Thursday home by Friday and told 6 - 8 weeks and I will be back to normal. was worse than before the op. goes back to the hospital and gets told 3-4 months and all will be fine. stated to panic by this point but hey the doctor said it'll be fine, who am I to say otherwise. returns to hospital and thats when they told me there is only a 40% success rate and if tis not right in 12 month after the op then your in the 60%. I tried everything I could to make this go away and nothing worked. MRI after MRI, scar tissue, inflamed nerves, the list is endless. I have had every drug but morphine and that was through choice and where I drew the line. I was completely out of it on all these medications that I cannot remember much about the first two years but my god I was nasty to people and yes, at the brunt of it was my wife and kids. I am not suggesting this but this is what I did.
    About 2 years ago I came off all the drugs (the right way with the GP's help) as I couldn't cope with any of this anymore.  I was sent on a special course for pain management. I don't know why I did it but the only goal I set myself was to go every session wether I wanted to or not. I had to drag myself to do this some days and it was only 10 sessions once a week. at the start of this course I was on two crutches. I was told right from the start we are not going to fix you so don't expect a miracle. no one had ever said that so straight away I was a little confused but intrigued. the course was a group of people with all types of problems but everyone of us had chronic pain of some sort. there were bits of really light physiotherapy and bits of group therapy for the mind. relaxation techniques and such. I stuck to what I set out to do and completed the course. It was weeks after the course had finished and I was having a nightmare day and my wife had two friends over. lucky for me they are really good friends and take some stick off me when I'm having a bad day. I had gotten to the point of snapping like I normally would, and normally I would basically tell them to go. instead I just said, I'm going upstairs for half an hour or so I will be back. I put on one of the tracks they had given me on the course lay down and just stopped. I copped with, dealt with and got passed what was normally going to be me being nasty. That single moment changed everything. I started researching into things and the more I did this the more concentration I was getting back. the more focus and drive to, not fix me anymore, but except and adapt to something. over the last two years I have built and adapted my life around what works for me and what works for my wife. the problems are still there and somedays are severe, but they don't take over no more. the main thing is I am mentally back to being who I was before. thats what I did not realise at the time. I had changed as a person without even realising and it had nothing to do with what I could and couldn't do. I have many useful tips that your husband can use which have helped me strengthen myself and got me down to mainly walking with only 1 walking stick. occasionally I need to go back to crutches but never really any more aid than that and I know it doesn't matter what happens one day, the next day will be different. 
    You will be Shaun's rock and you will need help sometimes too, just don't give up on each other and don't be afraid to ask for help. 


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