unsure of what to do

babyg

Hi all, as being new to this site just wondered if any of you can give me some advice? I used to work 50+ hours a week as a private carer for a man with physical and acquired brain injury due to an accident several years ago. I had an arthroscopy to my knee in August last yr, since then been on crutches most of time, not been back to work, my boss has been ok up to now as I have been unsure as what will be happening. I have now been told by my consultant that he cannot do anything more for me and has discharged me into the care my gp. I'm still unable to walk properly , in pain most of time and I am wondering what to do about going back to work. It is both physically and mentally demanding as he requires a lot of attention, he has got some carers in at mo but he wants me back. All my family think I won't be able to cope. I can't even drive HELP PLEASE!

dreamdaisy

Hello babyg, it's nice to meet you and I am so sorry that you have had to find us. I've been thinking about your post all afternoon, I cannot help on the work matter (I am self-employed in a very different area) but what I have learned ove my arthritic years is that my needs come first. If I look after me as best I can then I can better look after my clients. Your client has needs that you may no longer be able to physically meet and to try to do so could harm him - and you. It's not easy and I do empathise but I feel, from what you have told us, that your man will be far too draining. If you can't drive how the heck will you be able to work for 50 plus hours?

I've had two open synovectomies on my left knee and one closed on my right, but the former procedures left me on crutches and now I have graduated to a rollator as my leg joints are shot to bits. This is one reason why I cannot work as I used and I am sure that you have skills and talents that could be applied to another field. It's a matter of finding that field.

Life thrusts changes on us and one of the early lessons we have to learn is a certain degree of selfishness but that isn't easy. Please put yourself first because, in this situation, you are the more important. It's tough but necessary. I wish you well. DD

Invictus

Hi babyg,
Sorry to hear about your situation. You mention that looking after this gentleman is "mentally and physically demanding" and that he wants you to carry on looking after him. Have you thought about getting some extra help? If this is not an option then talk to your employer and see if they can re-deploy you into a job you can cope with. I would imagine looking after a disabled person involves lifting etc...From my own experiences lifting heavy weights causes my condition to flare up so I avoid this as much as possible! My own consultant told me years ago "you have arthritis young man, time to change your job". I was working as a fabricator welder which was heavy and demanding. I ignored his advice and became very ill! However, it's not all doom and gloom as I eventually came to terms with my new life, re-trained and now hold down a full time job, which, requires a lot less physical activity. Your family sound really supportive so perhaps you should listen to their advice! Also, in regards to your consultant and GP, tell them how you are feeling, get some pain relief and or advice. I am on infliximab infusions which are great but I tried cyclosporine, methotrexate the name a few...Swimming and moderate exercise such as a short walks also help with my pain and mental wellbeing! I hope all this makes some sense and if you need to talk again just post on line...It's not the end but a new beginning for you

babyg

Thanks for your comments, I've spent the past 24 hours thinking about my situation, work and home whilst trying to cope with having a bad day in general pain wise. Still not come to any conclusion as yet,as the pain and meds tend to make any rational thought virtually impossible lol. :shock: I am only employed by this man and only him as a private carer so not able to be put anywhere else to work really. I have worked in care since I was 18 and am not sure I can work in this field any longer which is really all I know. I am on tramadol, paracetamol, diclofenac and amitriptyline at night. O/A in both knees grade III in left, tendonitis in both wrists due to crutches. Going to see gp next Friday so will see what else he can come up with. What does anyone think about hydrotherapy? My physio booked me in for some to help with pain relief. Thanks again xxxxxxxx

dreamdaisy

Hello again, I am out on my feet but I promise to come back tomorow to answer properly - or as best I can. Take care. DD

rockchick

Hi. From what you say, it sounds to me that, for the moment at least, the physical side of care work may be out of the question. Dreamdaisy's comments about potentially hurting your client and yourself are absolutely right. It's a scenario you don't even want to contemplate.

So I gather you haven't been back to see your client recently? Would it be possible to arrange a visit, and talk things through with him? Or would his disability prevent him from having a reasonable discussion about your situation? Sorry, if this sounds insensitive. My only experience of such circumstances is via a friend from way back whose OH suffered a head injury, and although his life would have been far more comfortable with proper care from a qualified person, it took a long time, a lot of hard work, and a lot of temper tantrums, before he was able to reach a compromise. Which makes me wonder if some sort of compromise could be agreed between you and your client. If it's your companionship he misses, but can cope with others helping with personal care, would that be an option? So you would do the less physical stuff? Would he be willing to organise transport for you?

As Invictus suggested, this may be the time to consider if re-training is an option. Maybe sitting down face to face with your client, or the people who organise his care, would be a good place to start.

Good luck with whatever you decide.

Invictus

Hi babyg,

Nice to talk to you again I used to have hydrotherapy myself, warm water, relaxed atmosphere and gentle excercise. It was also a great way to socialise with other sufferers :!:

dreamdaisy

Hello again babyg, I'm not having a good day so won't be here for long. You are on some seriously heavy-duty meds so it's no wonder that you are finding thinking tricky. If you can't cope without these when not working how are you going to cope with a man who is so reliant on you? Will you be able to stop the meds so you can work? Everyone's situation is different, it's so hard to know what to advise but I think it's time to start putting you first. As the arthroscopy has failed what could the next step be? A new knee? That could make all the difference. I don't know your age (I am nearly 54) and I have to wait for at least another 18 months before I can get mine, in the meantime my right hip has now 'gone'. If I'd had them earlier this might not have happened.

The arthritic path is long, slippery and all downhill. You need to put yourself first from here-on-in. Good luck - it's not being selfish, OK? DD

babyg

Hi All, I've had another sleepless nite, trying to sort this lot out in my head, I normally see or at least speak to my client at least once a week he normally rings me for a chat or a winge about other carers :roll: he doesn't need as much physical care as you may think. Just fetching, carrying, sorting meds, paperwork, bills assisting with dressing, taking him to and accompanying him to appointments and going for walks as he suffers with anxiety. I have spent a couple of hours with him on the odd occasion and come out exhausted. :?

Am I being a wimp? I know people on here are in a lot worse situation than me. Do I just need a good kick up the bum and told to get on with it :!:

Thanks all for listening to me moan again. Xxx

dreamdaisy

Only you can judge your limits. If you feel in your heart-of-hearts that this is going to be too much then don't go ahead with it. Your client has his difficulties due to illness, so do you. You don't need carers, he does and he needs to make a better effort to get on with the others - this is not your problem.

I've had to reduce my workload over the years I've had arthritis and it's now getting to the point where I can't physically cope with more than 90 minutes work per day. I coach dyslexics, which demands a deal of concentration on my part, and I now recognise when it's getting too much because my patience levels dwindle. I then have to cancel work for a day or two but so far my clients have been very understanding (well, their parents have, the children have just been happy not to see me!) Being self-employed is a boon because I can tailor things to suit me but I realise that the end of my little business is fast approaching (actually I've thought that for a while but am loath to pull the plug). I now have 39 arthritis-affected 'major' joints and it's getting increasingly difficult just to cope with every-day life, never mind work on top of that. I've had years to adjust to this, you are still relatively new to it, yes? It's not easy. DD

daffy2

Hi Babyg
Re your questions -
'Am I being a wimp? I know people on here are in a lot worse situation than me. Do I just need a good kick up the bum and told to get on with it' [sorry I can't get the proper quote thing to work]
The answer is 'No definitely not', to both. Your health issues are emotionally and physically draining, and forcing yourself to do more than you have energy for is pointless, and could well make things worse.
The relationship you have built up with your client makes it difficult to consider not working for him, but unless you could come to an arrangement for far fewer hours I don't see that you have much choice, and even so I do wonder how easy it would be for either of you to stick to the reduced hours?
It's a very difficult situation for you because it's about more than just this job isn't it? It brings in wider concerns about your future health and prospects. All the best in trying to resolve this, and remember you can always have a moan here.

pickle

Hi Babyg,

I haven't posted on this site for a while but your post struck a chord with me. My previous job role was similar to yours and I agnoised for a long long time before realising that I just could not continue to do my job. For me, it wasn't so much the physical side of the job that wwas causing me difficulties but rather the emotional and mental toll it took on me. I decided that i needed to still work for my financial and physical health so, I cahnged my career to allow me to do this. Like Dream Daisy I have also just started to try to set up my own business which (if sucesssful) will allow me to tailor my working hours. Maybe something similar might work for you? I do want to say though, you are most certainly not a wimp for considering your ability to continue with your current employment. It is a really tough road that we all walk when living with chronic illnesses. Please be kind to yourself. We need to consider not only the physical imapcs of the choices we make but also the emothional ones. Best of luck. Pickle x

babyg

Thanks All for your kind comments. I am 43 years old I was diagnosed 8 or so years ago, but been able to work with pain but after this 2nd arthroscopy in August the pain level increased, yes a TKR is on the cards but my consultant isn't ready to do this yet as there is some cartilage left. I am very lucky in some respects that my partner is very supportive and as he works for himself he can take me to appointments etc. My children are great too, and help in anyway they can.
Thank you all for your support, you've all been brilliant I feel a little better now and will seriously think about my health and future. No decisions are needed as yet, my sick note doesn't run out for a while. I'll be seeing Dr next week.
Thanks again Babyg xxx

krisbe

Hi I think you need to put yourself first. 50 hours is an awful long time to work. Looking after this gentleman sounds extremely demanding and will not help your recovery. Stay in contact with him, he probably misses your companionship and friendship but look after your own needs, you are still young. Christine

babyg

Thanks for your msgs, I've had another bad night, followed by a bad day pain followed by frustration :x but still no decision made as such. I've been rejected for DLA, so there it is. I'm gonna have to do something. I'm not the type of person to just sit and do nothing. Who/where/ what do I do next..... my sick pay from work runs out in approx 3 weeks then it's ESA, but I want to work but not sure what I can do now, is there anyone that can give me advice on what to do regarding work (job centre?) Not sure.
Sorry for the rant again. Just had a rubbish week looking for to tomorrow tho going to see my best friend from school who has an arthritic spine, so we can have a good old moan together xxxxxxxx