OH has fractured femur - not a good situation

This is useful information for a lot of people Callistemon and I have thought about claiming for my mother who has dementia and has carers, which are partly funded by the council. Problem being if she got relief from council tax, she'd be reassessed and pay more for her care! Can't win Really.

Can't win Really.

That is probably the case Lazigirl - they get you all ways.

Lazigirl, does your mum receive attendance allowance? And pension credit? Age UK gives good advice.

Yes. We are old hands now at this benefits business - unfortunately

luckygirl have just found this thread and read through it all. I am appalled at the way you and your DH are being treated. I have no words of advice not having been in this situation so all I can offer is to hold you both in my prayers and hope that a suitable offer of help is forthcoming soon

Thinking of you <3

You've been constantly in my thoughts Lucky. I hope you are all right

Morning Lucky, hope you are ok.

It's been a while since we heard from her. I hope things are OK or at least as OK as possible under the circumstances.

Yes, it's been a while since she posted, but when she returns she'll be able to read the messages which show we've been thinking of her all along. (((*Lucky*)))

Thinking of you Lucky take care.

Thank you so much. OH is at times a little better, improving slightly as the day goes on - less paranoid.

I have been up to my eyes reading up on this funding stuff to try and get what is needed. I have to say I am thoroughly fed up with this - no-one has asked me how I feel about all this, what my views are on being tied to a caring role 24 hours a day when I do not have the strength to even help him from a chair. I do of course want him to come home - it is what he really wants - but I fear I may be no good at it. I am gregarious and like to be out and about a bit, and all that will stop. I am worried that I might become resentful - I was already struggling before. This all sounds horribly selfish, but if I cannot keep my head above water (I still take an anti-depressant) then how can I do this job properly?

On the 2 occasions when they wanted to ship him off for intensive rehab neither of us were consulted - they just strolled up to the bed and told him that he was being shipped off that afternoon to this unit 40 minutes away - another box ticked for them.

To add into the mix now is the fact that something has gone haywire with my knee - I was already using a stick because of other problems - and it is agony to walk now. I am taking painkillers and rubbing in voltarol gel but so far not to any particularly good effect.

Some of OH's paranoia is directed at me and that is going to be hard if it continues at home.

I have to go in to the hospital this morning to fill in the continuing care funding checklist. Unfortunately I know more about this than they do and have to keep correcting them - but sometimes a I feel so stressed that it is hard to gather my thoughts and stand up to them.

I am so grateful for all the supportive posts here - it means a lot to me. It is a stressful time.

Good to hear from you again Lucky, and glad to see you are - just - still functioning. But I fear for you if you don't get things sorted very soon.

I know you want your DH home, but I can't help wondering if it wouldn't be better if he was temporarily in a good nursing home, where he could recover with proper 24 hour attention, giving you a chance to get some much needed rest and recuperation. Is that in any way a possibility? Or would it simply make matters worse with regards to his paranoia?

As Bathsheba says , respite in a nursing home to get ready for him coming home , that is what happened with My OH , he was shouting to go home when he was at home , IYKWIM , so the Home didn't make it worse , and he didn't mind the others there , he did chat quite rationally to most of them , it was a local place so , if he didn't know them , he knew of them ,.
When he did come home , it was tying , I couldn't go out to bowls in the evening etc , and , yes , I did feel resentful! and now have guilt feelings .
We had sitters and carers and it is awful to say , but I miss those ladies now , nearly a year after .Sad to say OH was admitted and died in Hospital at the end he was very poorly , but they still thought he was getting home until that last day
I am glad he did get home for ages, and that I coped with loads of help , and family
I had to get a hip replaced and we all coped with me being missing for a few days , I coped , we have to don't we ? and I feel I did the best we could , but we are all different
It could be that if he gets a Nursing Home placement it works for him and you
I am still thinking of you and prayers xxx

Pleased you’re still fighting but could you ask for a carers assessment while they are doing the CC? It’s no earthly good them creating a care plan that puts you under physical stress. Save a little of your spirit to fight for yourself and your wellbeing. ?

I agree. It really sounds as though it would be negligent to discharge him home to you. With the best will in the world you don't sound physically up to the undeniable challenges that he might present at home. Visiting carers aren't there if there are struggles in the night.
Respite in a care home sounds like a really useful suggestion even if you have to pay for it. Good luck with it all.

Sending all good wishes and kind thoughts to you and your DH at this difficult time, please don't feel pressured to take on more than you can realistically cope with

I agree with everything Bathsheba Mamissimo, Jane and NanaK54 have said.

It sounds as though you should see your GP asap re your knee.

In your present state there is no way you could cope with him at home, with or without a lot of help.

We know he will no longer be accompanying you to the supermarket but maybe a little rehab so that he can help a carer to move him from bed to chair or at least stand a few seconds to relieve pressure.

My main worry is that his muscles are too weak to hold his new hip replacement and it is early days so could dislocate easily.

Please do not be bullied and allow help from your family.

I went through the continuing care checklist with a nurse this morning. She had never looked after my OH and was doing it all from the medical notes.

It went on for over an hour (and was in fact an out of date form she was using). I had already been through the checklist at home so that I could argue the case for the score in each section. She put some higher and some lower so I hope we can push on to the next stage, which in fact is already booked for Monday morning.

She asked me if OH had mental capacity and what could I say? She does not know him and was making judgements on this important point on the strength of two minutes introducing herself to him. I just said that sometimes he seems rational and other times he is paranoid and unable to make reasonable judgements.

I really felt that I was being judged - because clearly I have a vested financial interest in the outcome - and I got really tired and felt totally drained. It is such an iniquitous system. They said he can now transfer with one - a precarious process that I have watched. He has a zimmer there and leans backwards so his centre of gravity is all wrong. The physio managed to keep him safe, but I said that I would not be able to do that and worried about him falling again. I got an old-fashioned look.

It is almost as if I have been labelled as awkward because I am simply asking for him to have what is his right - because most people don't know about it and do not put their case. I really don't need this on top of everything else.

Sorry to grumble, but the systems in place are so tortuous and mind-numbing - there is nothing human or indeed humane about it all.

Courage Luckygirl! I'm sure they can see how tired and distressed you are and crucially that you know your rights. If in doubt cry!! I used to have to advise people to do that. No point in trying to maintain a stiff upper lip.
I wish the legion of Grans could swarm around you and set things straight with the hospital.
You never know though - the assessor today might get it right. This time next week could see him and you in a better place. I hope so.

Don't apologise lucky*, ever. Just say it like it is, at least we can offer the space for that although we can't help with your husband's situation. You've fought magnificently for him and are being sensibly honest about your own limitations.

It sounds as if you need an advocate for you both, but I have no idea where one would come from other than a family member.

Is there space in a day very soon for you to see your GP? At least with some sort of diagnosis for your knee and your doctors general thoughts about your own needs there is 'evidence' - not that you should need it - about your own health and physical limitations. Surely you should also have a carers assessment before there is any thought of your husband returning home?

I continue to be horrified at the treatment you are both getting and feel so helpless to make a difference for you.

Wishing the strength for you to hold on through this tortuous process. Sending love.

I echo everything said above lucky and I was going to say just what jane said. Cry. It goes against the grain but it can work.

Agree with all the above advice- and about the never ever feel guilty. I think all of us would have real concerns about him coming home now- and with your knee and your exhaustion- so much more so.

All of us I am sure would worry that our patience would be tested to the limit, and that we could become resentful, develp a short fuse and perhaps lose our temper out of sheer exhaustion and worry.

Totally agree too that a stay in a care facility would be a much better option- because of the paranoïa too.

What a hugely difficult situation for you. Have you discussed how you feel with the girls- or do you feel that you can't - for fear about being judge by them too. And for goodness sake, how can someone do a proper assessment without seeing HIM. Courage- but you have to be honest, with yourself first, with him, with the girls and caring staff- if you know and feel you just can't take him home now- for all the reasons stated.

Courage and lots of hugs. xxx

Lucky is there someone, a daughter perhaps, who you could prime with the information needed, but could be an advocate alongside you? This is a role I take on frequently and it not only relieves my clients of the stress involved, but gives me an opportunity to say clearly what they often feel unable to. You need someone to spell out, on your behalf, what the difficulties are for both of you if you try to take on the care of your husband at home without the necessary help. You will both be disadvantaged and it will definitely be detrimental to your own health. An advocate would be able to point out the difficulties assertively.

I feel your frustration most acutely; it's a reflection of what I deal with every day on behalf of my clients - I spend my days trying to manage intransigent systems on behalf of people who are just exhausted with battling through. It grinds even me down, but at least I can go home at the end of the day. I am so, so sorry for what you're going through.

From what you have said Luckygirl it sounds as if you would find it very difficult, if not impossible to cope with your husband at home.

I think the offer of a place at the community hospital is your best option. If he was there for a month or two it would give you an opportunity to see if he improves both mentally and physically.

While he is there you could use the time to investigate care homes in case it came to that.

You haven't mentioned that he has dementia, but his paranoia and aggression could make him so difficult for you to cope with day in day out.