OH has fractured femur - not a good situation

Luckygirl, hope you are coping with all that has been thrown your way. Thinking of you

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

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.

I’m sorry it’s necessary but delighted you have made enquiries. Sleep well.

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.

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.

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.

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 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

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.

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

Luckygirl could you show your DD this thread? It's hard for us to comprehend how she can just not 'get it' that you really really need a break then better ongoing care in every sense of the word. Alternatively, ask her to move in and cover for you for a week while you go for a break. That might do the trick!

Good idea Jane10, it is not possible to comprehend twenty four hour caring unless you have done it. Luckygirl - hope today is a good one.

Just a hug, lucky

I was manager of a nursing home for several years and none of the residents really wanted to come in. Some were able to recognise that they needed 24 hour care, but many were not. In my experience they all settled eventually, even if they did give their family a tough time when they visited. It reminded me of leaving a child at the school gates.....they might be protesting, but within a short time were settled and happy (according to teachers) until they saw you again at home time!
I also worked in care management and it sounds to me as though your husband more that meets the criteria for 24 hour care home placement, which would be in both your best interests. I hope you find a solution soon.

I agree with Lynker I think the time has come where you say enough is enough. You have your own health to consider. Once my parents went into care I enjoyed their company once again without the worry of cleaning them up and picking them up off the floor!

Lucky I agree with Jane. Your daughter has to try it out for herself and as you said, even trying to relax in your own home is difficult if there is always somebody around either making themselves a cup of tea or watching TV.

If you are not careful you will be sharing a double room locally because you can no longer cope physically. Your daughter is forgetting that you are marginally over the age of 29 years. It is so easy to dictate from afar.

Lots of good posts here, lucky, and I'm sure we all echo ginny's point that you are an amazing woman.

I have a daughter who is quite decided and it's hard. Could you get the others inside?

That's 'onside' not flipping inside!!

I do think the other DDs get it - they are not as emotional as DD2, who has just messaged me to ask if OH is really OK with relief fare as he was against it when she was talking to him the other day. I have tried to get across to her that we all need to sing from the same hymn sheet so he has clarity about what is needed, but she really doesn't see it. She comes over and is all lovey-dovey and Oh Poor Dad and just makes me feel awful. It is all with the best of intentions, as she is concerned for his welfare, but it is muddying the waters. I have never fallen pout in any way with my DDs but sometimes when she gets off the phone I just sit and weep.

The idea that we have to compromise here is just not something she gets.

It feels more of a problem than the original problem if you see what I mean. I do not want to fall out with her but having to fight my corner with a member of my own family is just a step too far and reduces me to tears

It is difficult for you lucky, nothing DD1 and I talk about matters a great deal so I can ignore things but your problem is all enveloping.

Can you include the girls' husbands/partners in debates. Do they gave influence or would it muddy the waters?

You must be the priority or you are no good to your dh.

Please offload to us - you know we are supporting you as I'm sure your girls are but they have their own take on things.

(((Hugs)))

Without knowing too much,luckygirl I would say she is in a degree of denial- at how serious her father’s condition is and how hard it is for you. She may be speaking with (to her anyway) the best of motives, but she is in fact making it harder for you.
I too have one shall we say “dominant” DD, great at getting things done but expects her idea of action to be mine. We didn’t fall out over a couple of things but could quite easily have done. She is in fact a lot like me, but the other two, (especially DD2 ) are much more empathetic - but DD1 is the one who swings into action.
However hard, you need to sit them down and, as you say try to ensure you are all on the same page. They also need to be on board regarding DNR wishes. Write down all you feel and as far as possible try to keep your emotions out of it. Being chivvied along is in fact a form of (however well-intentioned) bullying.
She also needs to be clear that your DH does not always know exactly what he wants or indeed is possible.
Live in care is an expensive option and as you say, not necessary not even desirable 24/7. Is there somebody e.g.from the Palliative Care team who can outline the different options, pros and cons, based on their experience.
Palliative care need not mean “end of life”care and all the hospices I know of set a 2 week upper limit- and I am assuming things are not yet at that stage.
Finally, a lot of people talk of the “guilt” of arranging respite or residential care. It is not “putting someone in a care home” it is finding the best level of care for your DH.
Both of you need consideration and your children and their husbands do need to face facts.

Sending my best wishes, Luckygirl. I have also experienced the frustration of family members not singing from the same hymn sheet in a crisis situation. There is no easy answer but try not to allow yourself to be pulled in opposite directions.

There’s a lot of sense here lucky, no benefit from me repeating it all. For me if you could somehow ask your determined daughter to take over for a week it might be a breakthrough. If that’s not possible then an external person spelling out the dangers of your current situation could trigger increased understanding. You both have health needs, both are equally important, both deserve to be met. Sending love to you both.

Thank you all.

It is hard to try and get DD2 to get on board with this - her business is seasonal and this is the busy time - she is up to her eyes and pretty frantic and irrational some of the time. I cannot ask her to take over some are to see what the score is.

In any event she does not share our past history with all its ups and downs, which inevitably impinge on how I am feeling. It is very complex. And very tiring.