accepting life has changed forever

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.

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.

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

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

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.

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?

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.

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.

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 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. ?

Get in touch with the general practice and ask for community navigators to get in touch with you. There’s often lots out there that we don’t know about. Also social prescriptions sounds weird but they’re starting to roll it out in UK good luck.
Im sure your situation is difficult but if you sit on a bus and only look in the shade that’s all you’ll find but if you look out of the window on the other side there is always a ray of sunshine to be found - good luck ❤️

I am a member of Scope. I have found their online community very supportive and informative. My local Stroke Association co-ordinator has been very helpful too. You could request a new needs assessment from social services and see what can be offered. My friend, who is single, but had a devastating stroke in February, has benefited most from these 2 organisations as have I. Stay strong, I wish you well.

Hi Canarygirl, I’m so sorry about what has happened to you and your husband. The same thing happened to my Godmother, her husband had a stroke and she was his principal carer. It was arranged for him to go to a center for two days a week in order to give her a break and to allow her a little time for herself. They were both in their eighties when he had the strokes and they lived like this for several years until he died this year.
I realise that at the moment such places may not be operative but please speak to your doctor or social worker about making such arrangements for when life becomes more normal.
I’m thinking of you

No you don’t need at kick up the arse. Your right life does change and we have to contend with it.
My husband has arthritis in his knee in dreadful agonising pain and has had two cancellation with a specialist hopefully the one in September will go through but I very much doubt it. Obviously his problem is not as bad as your dh but he is limited to want he can do he is 80 in January and has a pacemaker so we are just wondering if he will have an op. So I may be in a situation as his carer it’s life sadly that’s how it goes.

... is there perhaps some technology that could help? Perhaps you could take him on a "virtual" walk by using your mobile phones or i-pads - you would get the fresh air and exercise yet would still be in contact so you wouldn't have to stress about leaving him. It might be good for you both.

Have you thought about taking up any new interests that you could do indoors?
If you miss your walks, a treadmill might be useful. Painting or other art forms. Audible books while lying with a face-pack on or in a bubble bath. learning a new language. Developing some extra computer skills. Cooking for the sheer love of it(if that is your thing) Handicrafts, a greenhouse with two way reception to the house. Ballet for over 50s, is brilliant and free classes on Youtube now.
I watched something on Netflix last night and someone getting married said she intended to spend every day with her husband as though it was their last. That really stuck in my mind!
My husband said this morning before going to work, he is 73, that recently (I think he means since the lock-down) He is going through a 'purple patch'. We have never spent so much time together before in the 60years that we have known each other. He says he has never been happier or more in love. So I want to make each day as special as I can.

I have only just read this thread and felt I must post having been in your situation.
Yes, life has changed and a big help is acceptance of the situation.
It doesn’t help one bit to think otherwise.
My H already had Alzheimer’s when he had his stroke so a double whammy.
I got AA and this helped, I had carers in every morning to get him up, shower and dress him, then I was on my own.
I could have had evening cares but the timing didn’t suit us.
Some days he wanted to go to bed at 5:30 and on others it would be 7/7:30.
I found I could manage that, it was the showering I couldn’t do.

For a few weeks they offered me 3 hours respite on 2 days a week, this soon became a chore as I was often too tired to want to go out and my H was so desperate to see me he was hard work when I got back.

Eventually I got him into day care just one day a week, 9:30 to 5 pm.
It cost £80 , he got two meals and I could come home and go to bed if that is what I needed.
Unlike a poster said upthread, there was no transport provided, I had to get a taxi 4 ways each time.
Please consider this option, it made my week bearable.
Very best wishes to you, life has changed but go with it, find out all that is available to you in terms of help and go for it.

A big hug from me too. A carer’s work is hard and for the most, goes unnoticed by others.
My brother has cared for my Mum for the past 6 years. Sadly she passed away very recently.
They were best friends and found a companionship and love in each other that satisfied both their needs. They were both completely happy in just being together and passing time together.
Mum was not mobile so my brother could get out to do a quick shopping trip, that is all.
Mum said to him recently, I never knew what kindness was until you came here. This just says it all to me.
God bless to you both and I would say treasure this time you have together. It will be different but that doesn’t matter. If you love each other that is all you need.

What a lovely sentiment from your H kwest

I'm a carer. Have been for 22 years and counting (severely disabled child). Yes life is different to what I hoped it would be, but its only dark if you let it. I know its different because he has had school (and now college) and I have a husband to help. You need to learn to look after you. So I'd say get the car, book a carer to sit with him and go out!! If you cant affordprivate carers then make sure you have had a carers assessment and tell the social worker that you need respite. (And yes you will probably have to fight for ot)

My late husband has several strokes too but a massive one which paralysed him completely. He was in hospital for 6 months and then supposed to go in to care but I decided I could do it at home and wanted to. I was still working so gave up work to care for him. Life changed drastically, but I had a carer come in 2 - 3 times a day to help me get him showered, dressed and ready for the day and night. We had a hoist, wheelchair and commode all provided and I purchased an adapted Kangoo car with a ramp and hoist which took his wheelchair with him in it without transferring which he could not do. (no weight bearing at all). We got a good routine and managed to get out every single day, except when he was ill due to TIA's, UTI's or chest infections. Life becomes a roller coaster fr sure, but if you want to care for your husband you can do it with some help. After 3 years I realised I was ready for some respite, so had a sitter in for the afternoon a couple of times a week when I joined various carers groups for friends and peer support (I now run a carers group myself) Life is different but it can still be lovely, make the most of it, you do not know how long your husband will live. I adored mine, so obviously that made a huge difference to us and although he was no longer the man I married we still had a lot of quality time together during his 11 years in a wheelchair. I wish your luck and hope you find happiness in your new life.

When my mother found herself in a similar position with my father who needed 24 hour care, she got a half day’s respite per week, where a carer came to the home and she went out. It was part of the care package arranged between NHS and Social Services although she had to contribute to the cost. Everybody caring for another person needs a break, you included.

Life is certainly challenging at times. Since last September, 1st my friend R fell out of her attic hatch and broke her hip, then another friend N sadly killed himself at Beachy Head, then in Dec another one L had major heart surgery, then in Feb my friend S was brutally killed by a hit and run driver, then my eldest son caught the virus, then my friend M, her cancer returned, then this week my friend K has also been diagnosed with cancer. Then I have a cantankerous 90year old mother griping in the background ! I often feel lately that life is happening around me and I’m not in control of anything. I’m always a glass half full person, but it’s hard sometimes to stay positive.

Have you thought of having Zoom catch-ups with friends? A group of us have a regular Thursday evening slot when we pour ourselves a glass of wine and have a gossip and a giggle. We also have a cousins catch-up about once a month - we all live in different parts of the country and only get together at weddings and funerals so it is fun to get family news. It is not as good as the real thing, but fun and lifts the spirits. I was my husband's carer for a long time and I do know how it can make you feel like a prisoner - I couldn't leave him at all but those were pre-Zoom days!