[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
Stop the world I want to get off! - Carers UK Forum

Stop the world I want to get off!

Tell us a bit about yourself here.
Wow, where to start?! I found this site while looking online for a little carers support and thought I'd join the forum in the hopes of finding others to talk to I guess...
I am currently caring for my husband who untill 2 years ago was one of the fittest and active men I knew. He then slipped and everything has changed forever. He has subsequently been diagnosed as having CRPS and severe nerve damage. He is on ketamin, morphine tablets, patches and liquid, nerve drugs and now more recently antidepressants.However, these dont take away the pain, just make it a little more bearable. He can no longer use his arms properly (as he landed on his shoulders) and on his bad days I have to toilet, feed, shower him etc..... His meds can make him fall asleep, so even on 'better days' I cant leave him as he falls asleep even standing up. He recently fell asleep climing the stairs and fell back down, requring a hospital stay. He doesn't realise hes doing it and gets angry when I suggest that he should go to bed if hes tired. He feels bad as he thinks he is inhibiting my quality of life and Im beginning to resent the moods he gets himself into, (even though I know its not his fault). I can no longer work (Im a midwife) and am desperate to get back into it (Pehaps just to get away) and we could certainly do with the money as his buisness is about to go bankrupt Image However the mst worrying thing is how it is affecting our 4 yr old daughter. I always try to keep her distracted from it, but its getting more and more difficult as the doctors cant controll his pain. She has become so emotional and clingy and is not a shadow of her former self and I hate seeing what its doing to her. Shes now become so used to seeing him crying/shouting in pain that she 'plays' these situations with her dolls Image I really dont know what to do for the best for either my husband or daughter and feel that the hospital, pain clinc etc....are not much help at all! WOW - I have just re-read all the masses I have written, Im sorry for blurting all this out like this - just really needed to get it out I suppose. ANY advice would be very much greatfully recieved Image
lee,i know how you feel,your quite happy living your life and something f***s it up completely,in my case the wife gets alzheimers(42) and in yours a stupid accident,it just goes to prove how fragile life is,have a benefits check to see if your claiming the right money,don't worry about a long post,it's nice to have a rant sometimes,don't be afraid to ask anybody for help,as much as we think we can cope on our own,we can't.
Hi Malc, thanks so much for your reply, so nice to know that someone else understands Image I think the hardest thing was that everything has changed overnight and then when you just about thinking evrythings as stable as possible and you're managing to juggle all the balls at once, something comes and knocks you back again Image
Im so worried about my daughter.....as I said shes only 4, but she just wont stop crying. She has always been such a happy, bubbly little girl and now she just cries for no *apparent* reason while shes in the middle of doing something. Have tried with the health visitor etc... but they just said not to worry. How can you not?!!
You must struggle hugely with your wifes alzheimers - I used to work in the field before becoming a midwife and understand how frustrating it can be for family. I hope you dont mind me asking - Do you have any children? If so how have you dealt with their recation to your wifes alzheimers? Thanks again for reading my post and your message of support. VERY muchly appreciated Image
Oh my goodness, what a difficult situation you're in. I really feel for you and your little girl. Is she in a nursery/playgroup/school? Does she get the chance to get away from it all? Is anyone helping you to care for your husband? Do you manage to get away from it all too?
Don't apologize for ranting - we all need to let off steam and this is a good place to do it. People on this forum understand where you are coming from!
I'm sure there will be others along shortly to offer you some good and practical advice.
Take care
lee,my kids are 16,18,19 and they are heartbroken watching the decline of mum,kids shouldn't have to be going through this,your daughter should be worried about where the next bag of sweets is coming from not about how dad is,try to keep life as normal as possible for her and explain to her the positives,kids aren't daft they will pick up on your negativity.
Welcome to the forum. Your post says how stressful the situation is but you don't mention any help being provided for you? Be sure to ring or email the helpline and see what they can offer. My own caring situation is different, but the desperation is very familiar to me, and will be to others on the forum. I think all three of you would benefit from some form of counselling at some stage, only you can know when the time is right. I found it helpful to make a list of everything I felt bad about, in descending order. Then I made a list of what I felt I needed most. Just the act of writing it down (and shuffling it around a few times) helped sort out my head a bit. As you are a midwife, I wonder if you can short circuit the system in any way to get what you need in order to get back to work again. This isn't at all selfish, you need a break from caring and some mental stimulation too, quite apart from the money and midwife shortage. Post as often as you feel the need, we all understand how stressed you are feeling.
Thank you all for your kind words. - It really means so much Image I hadn't really thought about councelling before - I will look into that, thankyou!
I have no help with my husband and unfortunately we only have limited family who live MILES away. My little girl is at school, so she gets a break from the stress at home mon-fri. But she is now beginning to suffer at school also. I have recently asked for help from the health visitors, but they have said they are not really sure what they can do! I just want to protect her from this as much as possible as it is heartbreaking seeing her so badly affected by the whole situation. I have felt like leaving my husband to ensure that she is sheltered from the day in day out events she has to witness, but I could never do that as I love him and want to be there for him. Also I dont know how he would cope opn his own. We dont qualify for community nurses as he isn't ill enough 100% of the time and on his 'good' days can just about fend for himself (aside from the drug side effects). I would love to get back into work, but cant leave him on his own because of this meds and their effects and becuase we cant predict his bad days - so wouldn't be able to work a rota. If he is bad and I was on shift, he would then need help with feeding, toileting etc....
Im sat here now waiting for the emergency doctor to arrive, while he is in bed crying out in pain. Ive had to put a cd player in my little ones room so she isn't disturbed by it. It just really feels like there is nothing I can do and that Im failing them both Image
But then, I remember that I'm the only person who's doing the care, the cooking, the cleaning etc... and suck it up inorder to get on with it. Its such a repetative situation and I can see it all falling apart, but cant sort it out before it happens...if that makes any sense?
Thanks for all your tips....I will be looking into them all in the morning. I've never spoken like this to anyone before so sorry for joining and offloading like this on you all straight away! I look forward to being able to offer suggestions and support to everyone in return. x
Don't be sorry - off-load as much as you need to and think seriously about the counselling. We're people in various caring situations and can offer empathy and guidance based on our own experiences but you need to find the right support for your situation.
Hi Lee and welcome. Don't apologise for off loading, it does you good to get it off your chest.
try ringing the CUK helpline
Forget about the good days, it's the bad days which are most important as far as getting care is concerned, especially things like Disability Living Allowance. Social Services should have done a needs assessment on your husband and a Carer's Assessment for you, told you what help is available etc. etc. The Health Service ought to have a children's psychiatrist and mental health service of some sort. That's sounds a bit drastic but I feel sure that if you ask them how you can help your little girl, they should be able to point you in the right direction. (My neighbours daughter had a few problems and I know they helped her). Much better to nip something in the bud. The Education Department ought to know what is available too. Hope that helps.