accepting life has changed forever

You are not being selfish you are being human. I think the Stroke Association may be able to give you some advice and local volunteers may be able to offer respite care. You do need to care for yourself if you are going to continue to care for him. ?

I'm do sorry to hear this and all these restrictions don't help. I hope you have had all the assessments you and your husband are entitled too. You need and deserve all the help you and your husband need

You do not need a kick up the arse. You need to know that you're amazing and you need some respite. Caring is hugely demanding and I salute you. I genuinely believe that it is people like you, who are true heroes, quietly just getting on with a heart-breaking and exhausting role 24/7. True love.

On the other side of the coin, I survived a stroke 17 years ago. I was young enough to make a reasonable recovery. My mobility and balance aren’t good and I’m visually impaired but I can walk enough to get in the car. I can’t drive anymore and going anywhere on my own is difficult. I’ve encouraged my husband to get out and do his own stuff and you need time to yourself. It’s true life will never be the same but it can still be good.

Ah Kazbal, like you I had been with my husband since I was 18 and life without him was unimaginable. First I was a child in my parents house, then I was a wife in our home. What else was there?

I can only echo MawBs words. You will have a life, a different one although you cannot imagine it now.

And all your memories will be valid, even the bad ones will be part of your whole life together that you treasure.

At my husbands funeral a friend read a poem by John Dryden. Here is part of it.

"Come fair or foul or rain or shine
The joys I have possessed this day are mine.
Not heaven itself over the past has power..."

Keep posting?

There are now, thank goodness, very many systems to get people with severe mobility problems into cars. Has he applied for Mobility Allowance, which would mean you could use that to purchase a suitable car?.
Getting out in a car could so good for both of you. and if he would./could use an electric chair - would mean that you can go off to visit all sorts of places together.
Twenty years ago, my hubbie, who was totally confinded to a wheelchair, found a car and gadget that even allowed him to sit in the front passenger area. The Chair was lifted into the car by a remote control and swung into position. Sure there must be many more and better systems now.

I am so sorry not to have replied sooner, he had another mini stroke yesterday and have been sorting out blood tests etc. Thankfully he knows me today so onwards and upwards. Thank you for so many helpful suggestions which I will investigate.
I can only send good wishes to others who are in a worse situation than I am and again thank you

Sincere sympathies Kazbal
But remember it ain’t over until the fat lady sings- so cherish each day you have (scream out of earshot at the bad ones) but however hard these days are they are so important for you both.
You can only do what you can do - nobody is superhuman and if you need to rant or seek a friendly ear here, we are here for you and there are many who will know where you are coming from.
PS your life will not be over however much you fear that day.
I take comfort from these lines from a poem which I have on my DH’s gravestone
To live in the hearts of those we leave behind
Is not to die “

Nobody can take your years together away from you

Hi. I've just joined this site. Never done this before. My husband was diagnosed with colon cancer in January. It was operable then. But was told a week before lockdown that they could not do anything or give him any treatment due to him being high risk of dying during the operation and chemo was out the question. He as other health issues and this is why they wont do anything. I feel helpless have unbelievable despair and anger, just watching him deteriate over these past few months. I'm already mourning him and I feel selfish at times because I feel I'm not there for him at times. I know I should try and make memories but it's getting harder to do and Covid didn't help. I feel once he as gone my life is over. I've been with him since I was 18. All my adult life. I can't see life without him.

Make sure you are getting any financial help that is available to you and your DH and use some of that to pay for a carer to sit with him a couple of hours a week so you can go out with complete trust that he is in capable hands. You could contact a care agency for a qualified person. Even if it is to meet a friend for coffee or to do the weekly shop it will refresh you and help you to have something to look forward to.

Same from me?. It sounds like one of the hardest jobs in the world to me, and you obviously care very much. Is there any scope for him to improve over time? Having a stroke isn’t necessarily the end of everything. I nursed many patients in the 80’s, who in time, became much better. There’s always hope. Of course, as others have said, get as much help as others can. God bless.

What everyone else has said

?

Just sending hugs xx

I can only echo what others have said, you are doing a great job and never never pull yourself down.

There is an awful lot of help out there, honest, I speak from experience when my mum had a stroke , the amount of help and equipment was astounding.

Yes, at the moment things are very much held back, but until this situation we are all in slowly gets back to some form of 'normality', look up and write down all the help that is out there.

I had carers going in to mum, I had 'the sitting service' to enable me to leave mum on own while I went out, endless equipment

There are day centres you H could go to that supply their own transport, the list is endless...

I am sending you a huge hug ((((())))) and a lovely bunch of flowers and the words YOU ARE DOING 1 HECK OF A MARVELLOUS JOB

And .....*You are not alone*

Great minds daddima.

Luckygirl mentioned paid carers, so have you claimed Attendance Allowance? Sometimes it’s easier to pay for respite, rather than feel ‘ beholden’ to family or friends, especially if you have to ask them for help, even though they may have told you to ‘ let them know’ if there’s anything they can do. I think people tend to think of practical help with shopping, lifts to hospital etc, rather than just letting you have a few hours to yourself. The Bodach had dementia for a year or so before he died of cancer, so our life had become like yours. As others have said, please try very hard to look for support, and do contact Age UK and Stroke Association.

Please:

contact Social Services to ask for a Carer's assessment.

contact the Stroke Association and/or Age UK

apply for attendance allowance if you haven't already. Age UK will help you fill in the horrid forms. It isn't means tested. You can then buy in help.

You are doing a brilliant job, I'm sure, but you need to look after yourself to continue to continue to look after your dh.

I was a carer for my dad which I was happy to do. As others have said make sure you look after yourself. My local council had a sitting service where a carer would sit with dad for a few hours so I could go out. Of course times very different now but could be worth looking into. Sending you massive hugs and?

Luckygirl knows whereof she speaks and her advice is excellent. But at present finding someone to allow you to go out is impossible, and in our case the fact that I have been here most of the time for the past six months has made my DH very dependent on me and it may be hard to change that even if/when I can find somebody. I think we carers need to kind to ourselves and accept our many imperfections. I try to put each day aside at bedtime and hope to do better tomorrow.

I am so sorry hat your lives have changed in ways that you could not have predicted.

I have walked in your shoes (though my OH had PD) and the only way forward is to do just as you have wisely said - find a way of accepting that change.

One of he things that helped me through was deciding that I would find ways of continuing as many of my normal life activities as possible. This was made possible by enlisting the help of family and also paid carers to be with him while I went out for brief periods; and also by the fact that this was pre-lockdown and these activities were still happening.

My OH was behind this decision - he knew I would need to recharge my batteries.

It might help you to go out for walks on your own for short periods - you are your OH's carer, and it is clear that you do with love; but you also still have your own needs, which if left unmet can bring you down.

It is a massive challenge accepting these sorts of changes and the loss of the life you had planned. I send you lots of good wishes and support.

No kick from me, but and a hug as I have some idea of what you are going through. My DH had three minor strokes in addition to other major health issues including blood disorders, heart problems and liver and kidney disease over the last years of his life and looking back I find myself wondering how on earth I coped - regular hospital admissions , weekly blood tests and transfusions, decreasing mobility and needing me to be strong for every aspect of our lives. I did drive (fortunately) but it was bloody hard and I just kept “buggering on “ as Churchill used to say, dealing with one day at a time.
It is easy to say make time for yourself and harder to do, but do ask for as much help as you can and have a couple of good friends, in RL or on GN to whom you can let your hair down and moan without feeling any guilt.
Try not to think of what you and he can’t do, but focus on what you can, however bad these days are, in years to come you will look back and need to be able to say “Yes, I did the best I could “. It is so so hard and few people will understand if they have never been in your place. There are many on GN who have been in a similar situation and have broad shoulders for you to lean on.
Bon courage!

thank you so much for all the suggestions and i will have a rethink going forward. I guess like most people here it has been very difficult during lock down with no visitors at all as he was very vunerable. He hasnt ruined my life, as the song of solomon says i have found the one who makes my soul sing and still does after more than fifty years so think i am very lucky . lots of good wishes to all of you who face other difficult situations

My only advice is to take all help offered. You cannot cope alone and nor should you have to. Do contact AgeUK and the Stroke Association. There is lots of help available, much of it free.

DH had a stroke 13 years ago, followed by several more since. It is very hard to see your hopes and plans disappear. Especially as a damaged brain never really heals. Quite understandable that you feel as you do. Stroke Association advice to carers is “Fix your own oxygen mask first” Easier to say than do but if you can get some respite care, seize it. ?