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Now what? - Carers UK Forum

Now what?

For anyone who is bereaved or no longer providing care.
Well I guess I can transfer myself to this section now. I cared for my wonderful Dad for almost 11 years since my Mum passed away - my Dad did 99% of the caring for my Mum and I popped in from time to time. Actually, with my Mum I should have spent about 90% more of my time not just popping in, but actually trying to help my 84 year old Father care for my bedridden Mum, but I was too self-absorbed and selfish to do that. So at least through the constant beating up of myself that took place after Mum went, I'm fairly ok that I did look after my Dad to the best of my ability. I gave up a well-paid and fulfilling career in the end so that I could devote as much of myself as I could to him. He was selfless, uncomplaining, grateful and I know he felt he was being a burden, but I never, never made him feel that way, I know that. When people told me he was lucky to have me I immediately corrected them and told them that it was ME who was the lucky one to have him. He was 95, partially sighted, had a stoma, had been permanently cathaterised and very limited mobility, but he still lived alone and managed remarkably.
After a fairly rotten 6 months following a hospital stay with a really severe UTI, Dad started to get frailer and frailer and in 12 days he had 4 falls and was eventually admitted to hospital with pneumonia and acute kidney injury. So for almost two weeks I sat and watched the life slowly ebb out of him. With his normal resilience he actually managed to fight off the pneumonia, but his kidneys just couldn't take it all. Last Tuesday afternoon he was transferred to the hospice - which was so much more peaceful and calm for us and for him. 4 hours later he closed his eyes for the last time.
So I feel rootless, heartbroken, distraught and all those other feelings we get when a loved one leaves us. There is only life or death - there's no other options for any of us. He couldn't be alive as he was so ill and even a partial recovery would have been not what he or I would have wanted. So I know he had to go.
I spent so long telling myself of all the things I was going to do when the time came, but none of them seem remotely important, exciting or even interesting now.
How on earth do people who have cared for so long carve out a new life? The thought of it right now seems immensely daunting. :(
I recognise that feeling, Ladybird. As several of us here will attest, it takes a long time to move on and find purpose again - but you will...slowly and a little at a time. We are here for you.
Be gentle with yourself.
Yes, it does indeed take a long time to move on.....because we feel we are 'leaving behind' the person we have lost. But we never leave them behind, Ladybird, truly we don't - we take them with us, in her memories, and above all in our hearts.

Go easy on yourself - we all beat ourselves up when someone dies, accusing ourselves of what we could have done, should have done....I still feel guilty for 'abandoning' my mother to give priority to my husband, and of not sufficiently realising just how frail my father was getting ....and that's over twenty, thirty years ago now. I beat myself up still about how I should have behaved when my husband went into end-stage, how I should have tackled the doctors, got him more treatment, got him a little more life....

It's part of grief, part of bereavement, and it's normal and natural, though so very very painful.

Yes, you were fortunate to have your father, and he to have you, and that is the most important thing, that love bound you together, and binds you still. Your tears are your tribute to that love, the love he had for you, that you hold forever, and your love for him, that can never die. For love is stronger than death.

Kindest wishes, at a time of great grief, Jenny
Hi Ladybird, Sorry to hear about your dad. You have to remind yourself of all the good that you did for him, whilst caring. It's going to take some time to realise that you have to care for yourself now and that's a very strange, seemingly not natural feeling. After my husband died 3 years ago and after caring for him for 12 years, I felt alone, frightened and worried. Those feelings are natural when you've given your all for so long.
All I can say, with the others is to take your time, don't feel guilty over your 'feeling bad' days, you're not going to feel better overnight. There's no rush or time limit for these things, only you know what to do, but only when you know the time is right to move on. Your mind's not clear right now, so give it time to clear itself and you will be happy again. Be kind to yourself.
Thanks everyone. I've got a problem now that I didn't know I would have! I think I mentally prepared myself for losing Dad over the past year - lots of falls, lots of UTI's, watching him get frailer etc. And the last 2 weeks of his life were just awful and I think some of that utterly awful grieving when you just want to scream and cry and rant took place during those two weeks. I'm not saying I'm not completely heartbroken and already missing him like crazy, but there seems to be some feeling of "acceptance" that I never had with my Mum. I've lived alone for 15 years and I'm perfectly happy that way. I've got a mass of stuff to do over the coming weeks/months that follows the death of someone - particularly your one surviving parent as there is all the clearing of the property to be done. Having cared for Dad for so long, I genuinely feel I want a bit of quiet and reflective time to myself - and to start to reclaim a bit of my own life. And I know that's what Dad would want me to do. The trouble is, (I know this sounds ungrateful) my one surviving aunt and my cousins and a couple of my friends are phoning or texting me SO much - which I know is lovely - but a lot of the time over the past couple of days I have been content straightening out my flat after my children had been here for so long, catching up with the laundry, starting on the probate - all that kind of mundane stuff. Then I'm asked for the umpteenth time if I'm ok, how am I doing and it brings everything back and I go one step backwards every time I'm asked. These are all genuinely lovely people who have the very best of intentions but I JUST WANT TO BE LEFT ALONE FOR AT LEAST A COUPLE OF HOURS!! And the even worse thing is I want to say to them, actually, I could have done with this level of support when I was run ragged with middle of the night phone calls, and twice a day journeys to the hospital, and scrubbing carpets and walls when Dad had fallen and his stoma bag had burst or his dinner was all over the floor - but I know that nobody really understands all this unless they are a carer themselves. I felt so alone and isolated when I was caring, and now, when all the awful side of caring is over and I really want my own space - I can't get it.

Has anyone else felt like this? I've thought for hours how I can tactfully say "I'm OK - I'll let you know right away if I'm not" - but I feel sick at the the thought of having to effectively tell the people who I love the most to s*d off for a few hours!
Ladybird, that sounds familiar....

One of the 'oddest' things in a way in the first few nightmare weeks after my husband died, was that my house turned into Piccadilly Circus! In a way, it was lovely to know that friends were rallying round, and lots of them called, and had lovely chats with me and were so, so kind.

BUT, I did rather feel that I was having like a kind of Open House to All Comers!

It might have been 'good' for me, I do know, because maybe the alternative would have been to collapse totally, but at the same time rather like I felt oh, for heaven's sake, can't I have peace and quiet without having to put the kettle on yet again and have another cuppa at the kitchen table and go through it all again with yet someone else!!!!

It does seem ungrateful, but there it is. I know I was basically very, very touched by everyone's attention, so did not begrudge it fundamentally, but it did seem just a bit, well, 'odd'. But then, life was hardly normal at the time....

I would say with you that you could always just tell people, 'thank you so much for your kind thoughts, but I need to be alone with myself for a little while longer' or something 'acceptable' like that.

I'm glad that it all seems 'easier' this time around for you in this strange aftermath, and that has to be a good sign, doesn't it, that you are OK with being on your own, with your tasks and your memories. Just collecting your thoughts and feelings in your own company, in your own time, little by little.
What a lovely problem to have! Wish I'd had that number of people caring about me when mum died. All brother, nephew and niece wanted to know was when they'd get their money!!

Just put your answerphone on, with a simple message, saying you are fine, busy, etc. They are now probably feeling guilty now about what they didn't do. Otherwise suggest they email you.
sincere condolences ladybird,
we all go through it its never easy
my happy memories have been the main thing that helped me,
smiling a4 photos of mr bigbear where ill see them on the wall in every room
tbh i really appreciated every bit of support i got as long as it was conscructive and positive
the small amount of support that i felt wasnt helping i just politely refused
people as you say mean well
i also got a couple of friends to field calls about the stuff i didnt want to have to keep repeating
and if people asked if i was coping ok
i just gave them a hug and said i was getting a lot of support from the community and kind people like them and really appreciated it1
that was usually enough said!

your dad sounds like he was a really lovely man ladybird
i hope we will all be as lucky as him having a loved one near
when our time comes!
like mr bigbear a good death,
just off to prepare dinner!
all the very best ldybird
love hugs and respect and peace and quiet
love bigbear xxx ;) :)
You're very lucky Ladybird to have cared for such a lovely sounding parent. I've been caring for my Mum since 2009 and she's becoming more selfish, irritable are tiresome by the day.

She's been into respite once out of necessity due to operations on both legs. She was in for 6 weeks and I have to admit I was jumping for joy! No nagging. I could go out - I'm more or less housebound when she's here. I went to the doctor yesterday and stayed out for 1 hours. It's the first time I've been out since August as I'm unemployed because of her. She's very demanding but I never get any thanks.

I'm dreading Christmas!