What I find hardest

I am shocked and have tears in my eye as I read these posts. I had no idea of the reality of being a carer. How very sad. And where is the help that is so badly needed. My heart goes out to you all. I only hope I could be half as wonderful as you all are. Luckygirl you aren't horrid at all.

annsixty I hope you can come to terms with that and make the decision - you will be able to look after yourself and have time to visit your DH as often as you can, refreshed, and know that he is being well cared for.
Good luck with whatever you decide.

Ann60 Yes, it is the right thing to do, both for your DH's sake and your own. You can no longer guarantee his safety at home. Now he needs round the clock care from professionals who are working shifts and having regular breaks to recharge their batteries. It is too much for 1 person to manage on their own 24/7.

The SW ha9d been to day and I am 75% decided that full time care is needed .
At 81 I can cope no longer.
I have a few days to decide and come to terms but I know it is right

Oh heavens ann - it is so grim. My heart goes out to you. At least I can go out sometimes with my two DDs "on Duty" - honestly ann - you must put your foot down with the SW - you MUST have your day's break - you simply cannot let them take that away from you. Please put your foot down with a firm hand. I will be on your shoulder egging you on!

I don't know how I would cope either; having coped with elderly parents, one of whom lived with us (but was cheerful despite all), I do have an inkling.
I am full of admiration for you but very angry on your behalf that you do not receive more help.

Lucky you are not horrid at all! You are a star to cope with it all and you Ann are a star. I am in awe.

DH has a cough and I am finding my patience wearing thin - heaven help him if he ever really needs taking care of!

I totally identify Luckygirl,
I cannot leave my H for even half an hour, I rush upstairs, shower and if I wash my hair it has to dry on its own, not a good look I can tell you.

I only get out of the house one day a week, That finishes next week but the SW is coming to discuss that this afternoon.
If I told you of the nightmare routine every single morning of the week I doubt you would believe it.
It consists of him saying like a broken record, where are my clothes, why is the door locked, what do I do when " the girl" comes, do I take my clothes off, where will she shower me?
This said on a loop for up to an hour and a half.

This morning I had to take my breakfast and eat in another room.

The door is locked because 3 weeks ago in the early morning ,he escaped and went in his pyjamas and dressing gown for a newspaper.
He was found wandering, I had already rung the police and they fetched him from the newsagents, who had also rung the police , and brought him home.
They stressed how vulnerable he was, as if I didnt need know, and told me to keep doors locked.
He hates this, he likes to be in control ,as he always has.

Well I feel better for that, awaiting a visit fron carecall this morning to fit a safety device for my peace of mind, and the SW this afternoon.

Luckygirl you are not horrid at all, just a person struggling with problems 24/7.
Try and get some breaks where you can and don't feel guilty, sometimes to survive you have to harden your heart a little.
You are doing a great job for your husband

I remember being in casualty with my mum who had had a fall. A very young doctor told me I could take her home. I was at the end of my tether and for some reason an older doctor appeared, looked at me and said 'we will keep her in overnight'. I still feel guilty about that but it was such a relief.

Grrr. Went to choir tonight, making sure all well with OH before leaving - fed, watered, not feeling ill, lifeline round neck etc. For the third week running he called me out saying he was ill and I must come home. On each occasion he is OK when I get back and it is all in the context of him not taking one of his meds. It is a pattern - refuse meds - get iller - want me to make him better - I can't if he doesn't take the blooming stuff! Ditto his laxatives - won't take them, then gets in a pickle with his hernias. It makes me so frustrated as everyone is trying to help him, but if he ignores advice what can I do? - except listen to him grumble endlessly about his symptoms - really - all day long - and part of the night.

It is such a roller-coaster - highs and deep lows. I never know where I am with it all.

OK - I have let off steam now - I really am not quite as horrid as I sound!

Its just a shame there isn't more help for carers.
Working around the clock, in a lot of cases, lifting, being woken, taking on the work of two or three people.
You all are very special, even if you never think of yourselves as such.
You just are.

Such lovely helpful support here which is hugely appreciated.

I have cared for elderly parents but it must be so much more difficult when it is your OH who has been there for you all your married lives (or all the time you have been together, even if not married).
Luckygirl and others, take care of yourselves too

Yes, and it is exhausting. Have had several close calls over the last month. But somehow my OH finds a hidden reserve and now is getting over the worst of it. It's almost like it didn't happen. Had a similar experience 3 years ago, I think at this rate I will pop my clogs first because of the strain!

You are all the salt of the earth. I know that caring for a loved one brings so many emotions. Sadness, frustration, anger, guilt, but we all know that it's the illness its self that's hard to cope with not the person themselves. You can only do your best. Yes, you are very special people. I don't know you all personally but I feel very proud of you all. Sending big hugs.

You carers may feel that you are not special and that we would all do what you do if the situation arose, but please believe that those of us who are not (yet) in your position admire what you do. You are giving us a good example and letting us know that it is possible to deal with such awful situations. One day any of us may find ourselves thinking that if you can do it, I can do it. [hugs] for you all

It can all depend on how soon you need CPR before a hospital will agree to DNR. My grandad would end up in hospital and it would be 24 hours before they would even discuss it despite the fact you wouldn't have kept a dog alive in the state he was in. He was skin and bone with a pacemaker fitted before we realised he was heading for full blown dementia so his heart just kept beating whilst everything just died around it. It was horrible. Eventually he got pneumonia so they withdrew all treatment and put him on the Liverpool Pathway. Basically he drowned in his own mucus whilst sedated. It was a pitiful end for a very proud man and broke my heart. On the plus side, the hospital staff were lovely allowing me to be beside him 24/7 and giving me time to talk to people who wouldn't hold my anger against me.

Lucky girl , I have a travel” pillow “ called a Trtle which is basically a long scarf with a built in neck support which is fastened with Velcro. Perhaps worth a try for head support while napping for your OH. Sold on Amazon or through their own website. Wishing peace for both of you. x

I remember my OH's grandmother in her final weeks, usually demented, but with sudden unexpected moments of lucidity - as when she said to me, 'That dress has done you pretty well, hasn't it?'. My poor MIL was worn out and was finally persuaded to let her go to a hospice, where she was cared for by very kind nuns.
What a trial for you. All best wishes.

I think this is all of us, that are dealing with very elderly and frail or terminally ill people . Sending you some virtual hugs xx

Marthjolly - thank you for your kind words. But I do have to agree with Granny23 -when it comes down to it we all do what we have to do and respond to what life chucks at us. The support on here is tremendous.

I have days when I feel angry that all the things we might have done with our retirement are down the pan - OH has had his illness for over 10 years now. And there are times when my patience wears thin.

All any of us can do is our best; and I know that all the carers on here are doing just that. But I guess we have to allow ourselves to fail now and again.

You are special though, I'm not sure I could do what you all do.

Marthjolly I can only speak for myself, but I am not special, nor selfless, nor amazing. I'm just an ordinary women who does the best I can manage in the circumstances which I have had thrust upon me. I do what I do because I have no choice, there is no alternative available. DH, in lucid moments, considers me to be his Jailer. The reality is that I am his (or his illness's) Prisoner.

I nod and nod to my own shadow and tread a mountain down and down. My lungs say no.... but down and down this treadmill hill must go.

Luckygirl and all carers. You are so special to give your all to looking after your loved ones, ensuring their comfort and safety. So selfless, you are all amazing ????