Feeling adrift

Hi, I really understand and can relate (slightly different situation) but my first partner had cancer and I looked after him at home with help. It was so hard looking after him, I ran myself ragged but when he died I felt so redundant. Looking after him had been my main purpose and I felt useful and needed. It took a long time to settle afterwards. Be kind to yourself, find some things to do which you enjoy and accept that it will take quite a while before you adjust to your new life. You are going through a period of loss for the life you and your husband had, because although he is still here, things have changed. Xx

My closest friend had to take his beloved wife to a home 5 years ago after 5 years of caring for her himself. In his case, he's felt a lot of guilt and he goes to see her every day without fail. He was asked several times over the years if he might consider counselling, but he feels that's not his way. I am certain that it could have helped him if he had accepted that help. I really hope you do consider it, preferably a person who knows about dementia. Someone who knows how to help you. You deserve to enjoy your life as much as you can. I'm sure your dh would want you to, but I do know its not that easy. I wish you all the luck in the world and hope you find some kind of happiness.

I have not been in your situation but have had depression. Adrift what to do. I found writing a list at bedtime of what I was going to do the following day helped. Even stuff like Cut my nails. Then you cross each thing off when it is done.and the rest of the day is yours. Go out for walk is a good one for the list, even 15 mins.

Message withdrawn at poster's request.

When my husband was in hospital for two months a year ago, I spent a huge amount of money staying in hospital guest accommodation to be near him. The family were trying to persuade me to have a few days at home for a rest, but I found being at home on my own unbearable.
He is now home, and my life revolves round his well being, and these shared experiences make me apprehensive about the future, but what is the answer?
To link with another topic, I believe the lower pension age for women was largely to recognise the fact that for women, retirement was often the time they took on extra caring responsibilities.
It would be wonderful if there was more help with practical and financial problems, though the emotional upheavals would still remain.
Thinking of you, luckygirl, and hoping all the advice here will help you.

Luckygirl when a burden, such as the one that you have lived with for a considerable amount of time, is lifted, it is enviable that one feels at a lost end. This feeling can in cases lead to a feeling of worthlessness and depression. So take great care of yourself and get involved with other things and people to reinforce your feelings of self worth.

Don't mope around the house looking for useful things to do. But do care for yourself and enjoy yourself, guilt free, it may take some practice, you have earned it and are over due some pampering.

Thinking and praying for you.

It’s only change.
Change is often hard.
Give yourself time.
Your new life, routine will emerge..
Enjoy.

That may be kindly meant Jue but is hardly helpful to say “it is only change”
It reminds me of the woman I spoke to a few weeks after Paw died in November 2017 who said “oh dear, that must have cast a bit of a shadow over Christmas”
Speechless.

Oh good grief - it beggars belief that someone might say that Maw.

I spent a peaceful 2 hours with OH this afternoon playing scrabble, which he managed not too badly. He talked about the good and bad things of being where he is; how some carers are better than others (inevitable I guess); and how he sees being there as the only sensible option. He asked if I was lonely at home. I told him that we are still a team and always will be, but in a different way now. It feels very sad; but we have to make the best of what we have, as in every stage of life.

Lucky girl, we’ve been through the DST and got turned down, but I have written to appeal. The nurses in the home are all telling me it’s a waste of time “nobody gets that” but I’m still going to try. I have a meeting at the CCG coming up and they have actually put “the decision won’t be changed” in an email to me when I asked about the format of the meeting. So looks like a battle if I take it further.

The DST assessment thing is horrible, they just talk about what the person can’t do etc, which is upsetting for them and they try their hardest to mark them down so they can deny funding. I would recommend you read up about the procedure on Beaconchc.co.uk (Age UK and Alzheimer’s also have some useful info) before you go. And don’t be afraid to speak up if you don’t agree with the professionals - I was a bit intimidated/ overwhelmed by the whole thing and didn’t. Best of luck.

Maw, er silly person for saying that.

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

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.

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.

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.

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.

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...........

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!

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.

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.

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.

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

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.

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.