accepting life has changed forever

To the OP - you need a big cwtch from Wales not a kick up the bum!
I am currently feeling extremely bleak about the future. I assist my dad, who is caring for my mother who is in the last stage of alzheimers.
My mum has been bed bound in the last stage for many years, so there isn't a lot to look forward to. I know that being your husband's carer must be very hard work and I certainly am with you in a dark place mood - wise today.
Lots of love x

Oh no kicking...big hugs. As a 24/7 carer but am able to get H in car and go for a ride with thermos of coffee. We have a carer come in 3 times a week to shower him and I grab that opportunity to walk.

You definitely are not selfish.....we miss the socialising..I must admit I thought of lockdown positively because I didnt have to watch all my friends go to groups I belonged to and introduced them to! Big hugs

My husband had 3 major strokes 4 and a half years ago. He also has vascular dementia, anxiety and depression. I hate
Looking after him! He is paranoid and thinks that I make things up just to make him look bad. This last six months have been awful with his clubs and carers not visiting. He was an alcoholic for years although not had a drink for a very longtime, his behaviour reminds me of when he was drunk and I just lose my temper with him. He can’t be left and I have to lock tablets away as he tried to take his own life, just to get attention. I lost any loving feelings towards him a long, long time ago. A carer I am not. I can’t go back to my volunteering in reception class in case of the virus and I have no friends here. I was awarded 6 weeks part paid respite as before I was paying £1100 pounds a week. With the virus it isn’t safe to go into care . Carers support have been helpful but there is only so much they can do. Am getting a bit depressed myself as I have chronc pain.

You definitely need a virtual hug.
I had a stroke several years ago now but all strokes are different and I did get mostly better but it is slow as I had to learn to walk again and took 6 months to become continent as you have to relearn to react to bodily signals , then I was only 53 when it happened and not living in the UK, but not everyone does recover sadly.
This weird time makes everything seem harder but believe it will get better than it is now.
And take any help and advice offered

You are obviously a very caring person but, I’ll be honest, I hope it extends to include you. Caring is a tremendous output for anyone and you must look after yourself because your DH depends on you and no doubt you help to keep his spirits up.
Not sure why if you can drive you have no car. He had a stroke you didn’t . I think it’s a big mistake , for mental health reasons to live as if you had a stroke. Get care for him, even if he moans, give yourself a break , takes courage, go out. Do a bit of what healthy you needs to do. I know some people when they have a stroke feel afraid and want you there 24/7 but then you can both end up feeling down. That’s my kick up the rear but I also send you big hugs ? and flowers ? and admiration for your Love and loyalty.

You don’t need a kick up the rear, you’re coping with an increasingly difficult set of circumstances.
In Leicestershire there is a charity which offers companion visits via a social services referral. The staff can make drinks, simple meals, chat, reading to client or sorting out radio/tv channel etc. They can accompany clients to social settings if appropriate.
It might be worth enquiring if there is anything similar close to you.
You could really do with some time to do stuff without worrying about your DH.

I'm so sorry Canarygirlfor the difficulties you're going through. You feel sad for the loss of the life together that you were looking forward to - it's like being in mourning. I fully understand where you're coming from.

I went through similar when my now late husband had a terminal diagnosis - we both felt this dark cloud hovering over us all the time as we felt that we'd been kicked in the face. Our future had been taken away from us. Time - what does time do? It takes away the rough edges, that's all.

In the meantime I suggest you look at the little things which cheer you and make life feel good as ordinary everyday life is made up of lots of little things. for you.

You are a wonderful,kind person, doing such a fantastic job.You deserve a break every now and then, maybe the council could organise someone to sit with your Husband a few times a week, giving you both a break.
Sending hugs x

What can he still enjoy doing?

Ooh! It did! First time I have managed to do that.

Canarygirl you are having a hard time, having to deal with a siesmic change to your life . You certainly don't need a kick - rather more of a hug, and the fact that others are having a hard time doesn't detract in any way from the life that you are having to learn to cope with. Be kind to yourself - if you can't get out, how about some new books, or something to wear, or a magazine subscription, ordered online? I will attempt to forward a small bouquet to you but it probably won't work!

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!

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.

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.

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.

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)

What a lovely sentiment from your H kwest

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.

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.

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.

... 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.

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.

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

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.

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 ❤️