Feeling adrift

Good luck! We went through all this with my mum. She ended up being funded due to dual incontinence.

We were all surprised but relieved.

Same here, lucky. You must be exhausted. Sleep if you can x

I hope it turns out better than you think it will Luckygirl.

The CHC assessor was a dreary bloke with not a smile to be had. It was a very challenging morning but I kept my cool and soldiered my way through it. I am not holding my breath - I fully expect it to be turned down again. Then where I wonder? - ombudsman maybe?

Hope all is going well for you, Luckygirl

Wish me luck this morning - grim meeting with health bods and SSD to assess whether health should be paying for OH's care. Both agencies will be fighting to make sure their service does not have to pick up any of the tab. It involves detailed scrutiny of OH's needs and sometimes lasts hours.

As someone said to me the other day "Getting continuing health care funding is as rare as rocking-horse shit!" - quite. He has already been turned down once and I have appealed.

I have to talked to OH about it and he has opted not to be in the meeting - it is so depressing focusing on deficits rather than things he can do. And he does not have the strength to stay the course.

The outcome could make a massive difference to our lives - whether I need to sell bungalow or not hinges on this. DD3 is coming with me for moral support.

Is there a local carers charity near you? They usually can give support and advice to carers who have come to the end of their caring role?

I agree with the above. When my late husband went to day care at the hospice I was at a loose end, having previously thought that I'd catch up with this, that or the other.
Suddenly I had a lot of time on my hands and didn't know how to fill it. It was a shock to the system. As others have said you can only be kind to yourself and take one step at a time.

Nice Post gramnyparkrun.

Lucky girl, I do hope you've managed to get some sleep. I woke early and found myself thinking about you, and all the other carers out there, and felt the sadness of it all quite overwhelming, but also life affirming. To love and be loved...not everyone gets that in life and it is a precious gift. I want to reach out and give you a virtual (((hug))).
Many replies on here stress the importance of being kind to yourself, it's easy to say but hard to do.
In a dark period of my life a counsellor told me that everyday I should do at least one little thing that was a treat (to me), as despair comes when our own needs aren't being met. Being British I thought this sounded very self indulgent, but she insisted, and surprisingly I found, slowly, that I began to enjoy my life again, albeit in a different landscape.
You sound to have been selfless for a long time, can you perhaps find time today to give yourself a little treat and a little credit?
All best wishes for today, and your husband is a lucky man. ? Heres a tiger for strength and courage!

More wise words from others here lucky. I hope sleep came and the meeting be less difficult than you fear. Sending love and a hug.

Illuminating post GrannySquare I think your experience shows how slow the recovery and healing process often is.
Luckygirl you have a lot going on for your mind and emotions to deal with - 5 weeks is nothing. I am not saying you will cry yourself to sleep for 5 years - but you may.
Get tomorrow’s assessment /meeting out of the way, that will be preying on your mind too, then accept that you have taken the only rational course of action. You did try everything else and it wasn’t working for either of you.
Build your time with OH into a new routine, get back to your music, find the things which made you smile -and share them with your OH.
Guilt is a massive emotion, and very destructive, I still feel guilt that losing Paw has made it possible for me to do things I used to long to and that I cannot share those with him. But my head knows that that is just the way things turned out.
Do get help for your own depression though, medical or counselling, whatever works for you.

You're an inspiration Luckygirl and don't you forget it.
xxx

Thank you.

I actually rang the Samaritans this evening - something I never imagined I would need to do - as I really was at rock bottom. The person I spoke to was very kind. I feel a bit better now and hope to get a bit of sleep.

I think part of my exhaustion and emotional reaction now is because he suffered from anxiety for many years (and indeed had to stop work full time in his early 40s because of this) so I have been trying to deal with his problems for decades really - and then the PD arrived on top of that. It is as if I have tried my best for so long, and now I feel as if I have thrown in the towel. But my rational brain knows I have done the right thing by him. Trying to support him (and sometimes not very well) has been my life for so many years that it feels very strange to stop this suddenly.

Such an emotional minefield. I am seeing a counsellor from the hospice on Friday and I am hoping there will be some support forthcoming there - they are very kind there.

And thank you grans.

You did your utmost to care for your DH, Luckygirl so should never feel that you have let him down; it is such an upheaval in your life after all you both went through and is bound to take some time to adjust.

If you had done any more you may well have put your own health at risk.

Have you told your DD how you feel? Perhaps just being able to talk to them, to offload, or even to speak to a professional from one of the Associations mentioned about how you feel could help. Just to have someone willing to listen without expressing opinions.

Could you plan a few activities over the next few months? Making yourself think about something else, eg your music, seeing family etc may help.

You are all so kind. But how do I stop crying myself to sleep every night? I am always wrecked in the evenings - sitting here on my own makes me think about how sad it is, and how bad I feel that I was not able to find a way of him being at home with me. Maybe I did not try hard enough? - who knows? It all used to drive me crazy at times, especially when he was accusing me of trying to poison him but now I feel maybe I could have done better and should have coped better. What a mess it all is.

I cared for my mother for over 40 years & as many other posters have mentioned, at times I longed for release from the tyranny of duty & obligation as I had so little time & energy for my own wishes let alone needs.

Once my mother had died, I found that l did not just get the time back, it took some considerable time for my mind/body/spirit to return that time to me. I would wake at the weekend - I was working full time alongside caring - & could not connect with the hours that I had spent caring for my mum & that they were now mine. That phase lasted about 18 months, & I assumed that it was part of the bereavement. Yet other carers who I speak to who become free when the ‘loved one’ moves to residential care experience the same thing.

It has taken me almost five years to come to terms with my mother’ death - still missing her, particularly as Christmas looms - & to make sense of being a Carer for such a significant proportion of my life.

@Hert2Hart point about raised Cortisol & stress is very relevant & helpful. Caring can be a form of sustained trauma is some respects as it can be unpredictable, unrelenting & so isolating. So self-care & being kind to yourself is so important when caring (yes, I know...) & certainly is key part of recovering. I get the point about the brain’s cortisol & serotonin levels & efficiency can affects mind & mood, & are prone to interpreting this medically when what the mind, body & spirit needs is deep rest, recuperation & nurturing.

I found my local Alzheimer’s Carer support group invaluable - the 6 week Carer support programme did me the world of good.

Also the Carers UK online forum is generally good with a section of those who have stopped caring, recently or otherwise.

It does take time to adapt.

Lots of kind advice from others who have been there so the only thing I can say is - be kind to yourself. You’ve been through a hard time - maybe you can hibernate a bit in the dark days? I don’t mean stay indoors all the time - get out as often as you can - but when you are inside try to relax by doing something you enjoy. Yes, and keep warm!

its called withdrawal symptoms.take things easy. have a lay in in the mornings. dont hurry things. this is a bit like grief. you are missing him.. it will pass..at least you know he's safe and well looked after. not saying you didnt do a wonderful job looking after him. now its time for a bit of "you" time....keep busy. clean the house from top to bottom. have a sort out of clutter...........

Your job is not over Luckygirl when you are ready, you will need to work out a routine or way of life which meets your and your OH’s needs.

Luckygirl I can't really add to all the helpful comments and suggestions made on here but I send my very best wishes to you.

As others have said, you have done - and continue to do - a wonderful job of caring for your husband, and, now, looking out for his needs in this new situation. I feel sure he is greatly comforted by, and appreciative of, your care and compassion. I admire you enormously.

lucky one of our neighbours has lived in a care home for three years while her husband remains in their home and visits daily. Their large family all descend at the weekend, on the same day. Chatting with one there was definitely a sense that they felt better all visiting together and as their Dad hadn’t objected they would keep to the pattern. It could well be the same for your children but if you were to suggest separate visits they may well agree. No harm in trying if it would help you.

My H was in a very poor way when he went into care.
He had dementia, had had a major stroke, AF and within a very few weeks was diagnosed with cancer which proved to be very aggressive and he died within weeks.
The care home said they could not meet his needs but I had been expected to.
I had to pay two thirds of the fee, if I had paid it all I would have to have claimed benefits for myself.I still could not get continuing care.
SS would only sanction a certain group of care homes which while caring and adequate were far from luxurious and my H’s room was so small it was little more than a large cupboard.
It would seem a local rule applies as to help with finance.

My grandma cared for grandad for many years, mental health and physical problems, but was at a loss when no longer having to do so.
She did keep her self busy, reading, watching quizzes, sport and going out to afternoon danced with my mum, as she had retired.
It will seem so hard now weeks after relenquishing some of your care of your husband, but years after she couldn't work out how she had managed to do everything for him. And in later times she got attendance allowance for herself and employed a lovely lady I still see occasionally to do her cleaning once a week. She had a very full life and just has you have done she looked after her husband, my grandad to the best of her ability.
Then in later life she treated herself kindly, kept the heating on and accepted a little help from family.
As you say winter doesn't help but another few months and spring will be here and things will look so much brighter in every way.
I also love to go to the cinema on over 50s. Days, film and a got drink for £5 or a coffee and a people watch and read the paper in town for £2.
Take care.xx

Maw, er silly person for saying that.