Lucky, I hope some of my last message doesn't come over as brusque, but something odd was happening with the text and it wouldn't let me change words. I just thought it might help to know that others understand what you're going through, I also wanted to add that I think you're an amazing woman! Hugs for today! xx
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Health
OH has fractured femur - not a good situation
(937 Posts)As many of you will know, OH has had PD for many years and is very frail. He only weighs 6.5 stone. Sadly he fell yesterday and has a displaced fracture of his femur. He is not a good candidate for surgery - but there is no choice.
It is a worry that the ward do not have the air mattress that he needs and that he has at home - we had just got on top of the skin problem. He was on a trolley for 12 hours yesterday which will not have helped.
I am waiting to hear when the op will be.
Luckygirl I don't have personal experience of what you're going through, but I have a friend whose husband has MS and she's just had her second knee replacement. She tells me she finds it difficult having people in her home most of the day. They don't live in, but a male carer is there all day. He has a hoist to get him in and out of bed and a sling to get him in and out of the shower. loo etc. She is tiny so can't lift or move him very far. Two ladies come to clean and change the bed, etc. When the weather is good, the male carer takes him out, but sometimes for days on end there are the two men in the lounge watching TV and she feels like a stranger in her home.
The problem is that when they've all gone, she has to cope alone. He may have soiled the bed and she struggles to get him out and the bed changed and him back into bed. He kicks up a fuss and can be very aggressive with her and resists her having the respite weeks she's entitled to. She's exhausted and depressed but says she can't cope with the guilt of putting him into a permanent care home.
You need care at the moment. You must get your own health issues sorted. You cannot go on being in pain and providing care for your OH. When you're feeling better, things will look different and you will feel better able to cope. Live in care is intrusive, so is there not a short term arrangement? It's not his fault he's so sick and I know why you might feel guilty but it's not your fault either. No need to feel guilty, it's what is practical that matters.
Luckygirl I know how trapped and tired you feel , as you say , the carers are not always around when needed , then they arrive just as you have done the needful !Respite is not an option , it is an essential !!
Ann I can understand how you feel now . A year later I am wondering what I could have done differently , but you get so overwhelmed at the time , seeing the wood for the trees springs to mind
I know I couldn't have done anything differently , I did get loads of help and did get away , while DD or DS took over , it was so needed
Thanks ann - one of the difficulties is one of my DDs - she is a very powerful personality and it was she who precipitated his return home suddenly and in an unplanned way before Easter so we had to start off muddling through with care for 6 days before we could set anything up. She wants me to get live-in carers and to her it just seems a simple solution and she cannot understand why I don't just do it. Firstly it would cost about £1200 a week (gulp!), secondly SS would not subsidise a package of that size, and thirdly, as I mentioned above, I do not feel I could live like that. I suffer from depression and have weepy bouts, and could not put a brave face on it 24 hours a day; also I value a bit of privacy - strangers in and out the whole time would be very hard for me.
I simply cannot please anyone here.
Luckygirl the situation now is more than you alone can cope with.
You must be realistic about that and your husband will have to accept it.
I do know all about it, my mental health is hugely better now but physically I am "a wreck" this is because I carried on for far too long.
Please think about yourself for once.
Assessor from one of the local care home conglomerates came yesterday and got the full low down on OH. They have 3 homes relatively near us to whom they will send the details and they will get in touch if a suitable vacancy occurs. So we just have to wait. I know 2 of these homes, but will go and take a look at the third - it has a good reputation - they all do. OH is resigned to the idea of respite. The fact that I can barely walk round the house is starting to sink into his awareness.
He is very difficult to handle at the moment. When he was in hospital he was away with the fairies mentally and very ill physically. Now, after several weeks at home, the hopelessness of his situation is beginning to dawn on him and he has become quite demanding and irritable - and who can blame him?
I am thinking of getting him a self-propelling or even electric wheelchair so that he can take himself off round the house a bit and is not tied to chair or bed. But he cannot transfer himself at all so would be stuck in the wheelchair.
I have looked in to live-in care but have huge reservations about it. You know that feeling you have when visitors leave and (although you have enjoyed their company) there is a sense of relief when they go and you can get back to your own life? It would be like that without the relief at the end! I am not sure that this is for me.
Increasing the carer hours is a possible way forward, but they would be twiddling their thumbs some of the time as his care needs come in bursts - they would just be drifting about the house.
There truly is no easy solution that meets everyone's needs.
I do hope you can discuss it with your girls this weekend and arrange at least a week in a care home. It might seem underhand but don't tell your DH until nearer the time. You really do need to look after yourself and once he gets to know the staff there it should be ok. And you can have some rest and start to get the knee sorted.
All best wishes.
I’m sorry it’s necessary but delighted you have made enquiries. Sleep well.
Thanks all.
I do really feel pretty worn down by it all, even with the carers coming in. I have made some enquiries about relief care options and wait to hear back.
Luckygirl, this is simply awful to read. How can you possibly sustain this level of care? As you say, you need to know there will be some respite so you can seek medical care for yourself knowing your OH is being cared for.
Thank goodness there's only two days now to your appointment with the GP and do tell her what you're telling us! You cannot carry on like this and that's not being dramatic, it's fact. Hugs for being brave. xx
Luckygirl, hope you are coping with all that has been thrown your way. Thinking of you 
I second everything Charleygirl and others have said.
You cannot carry on like this, Luckygirl - quite honestly I don't think this is your DH talking - it is his illness and he is not being rational.
I can only agree with others lucky, hard though it is you have to think of yourself. You are both equally important as are your needs. Please be honest with the doctor. Accept all the help there is available and yes, respite care is essential, your health simply doesn’t permit you to continue as you are.
Ye gods Lucky. Charley has put it so well. Your husband is unable to see beyond his own needs and is being (though not his fault) entirely selfish. Please don’t feel you are being deceitful, just go along with the plan you have in mind. The girls will agree. Get a plan in place and DH will have to accept it. Otherwise he won’t have you to look after him at all !!
A Hospice sounds a good idea and one that may be worth exploring Luckygirl. They do respite care for some conditions, apart from cancer here. All I can say is what others have said. Your OH will have changed since he became more debilitated and is probably in self preservation mode and can only think of his own needs. For your own physical and mental health you have to prioritise and look after yourself. Otherwise you will end up knackered and bitter. I know how difficult it is to deal with the guilt but you have to be kind to yourself.
Do you have a local Hospice? They may well do relief care on a regular basis.
Have you told him how painful your knee is and how bad you feel? I bet you haven’t because you are a complete trooper and doing your level best for the man you love, but Charleygirl5 is right, he can only think of himself. Harden your heart and be brutally honest with him.
I second everything Charleygirl said!
He's not himself. When he was younger and fitter don't you think he'd be horrified at how he's behaving now? Don't let his current unreasonable personality get to you. It really is time those daughters of yours stepped up. Trying to do such heavy work while on crutches and in pain is completely unreasonable.
Lucky all I can say is I am sorry but not surprised. He can only see it from his point of view- he cannot understand how you feel - unfortunately he is at the stage where he can only think of himself and his needs.
You have to do whatever is necessary to remain relatively sane. You cannot continue doing the housework and using crutches.
I have just broached subject of relief care in a nursing home for a week and I am being given hell. I did not want to discuss it with the girls without first mentioning it to him - it seemed deceitful. Hmm.
Oh Luckygirl, what a shame. Do hope that things improve rapidly. I really think you need to think about full time care for your DH. You are of no use to him crippled or dead and to be honest that is what happens so many times. Quality of life for you both is the optimum! 
Bad day today - conveen has come off twice and he has also soiled himself - I am on the 5th batch of washing and he is down to having to wear pyjama trousers. I am in a great deal of pain with my knee and can barely walk. Girls and I are planning to have a talk about it all when DD3 is here next week. I have said that it is not working put well for me - and OH's life is lacking in quality too - and I want to discuss the idea of 1:3 relief care somewhere so that I at least have a week of rest ahead of me.
I am a bit pissed off about the knee business as it is 6 weeks since I first went to the doc about it - I waited 2 weeks for an x-ray appt, then 2 weeks for the results to get to GP, and then another 2 weeks waiting to see doc to discuss the results - I see her on Thurs. In the meantime it has just got lots worse. It is so painful and I am on crutches now. Five loads of washing and hanging stuff out while on crutches and in pain is a challenge.
Lucky, so glad to hear that you had a much needed day out. Hope it has re-charged your batteries a little, and hearing that you can get the benefit of a few hours care from the PD society is good news.
I hope your temporary respite has given you that “shot in the arm “ you needed luckygirl and shown you that it is possible to occasionally put yourself or others in the family, first. Well done!
I echo jane's sentiments, lucky!
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