hello this is the first time telling anyone how l feel .i care for my husband elderly and suffering, and l am feeling so alone and sad , he is so ill and they dont know what is the reason why he is so ill, without a raft of tests and it is not the right time to be going in to hospital, and in the scheme of things, does it matter what is killing him, his heart desease , copd,diabetus , vascular dementure , , l cant cry anymore, anyway who am l crying for, him or me. His doctors just found out that l have been caring for at least 2 years, and they threw anything l want at me, l am on furlough and cant go back to my job, he doesnt want anyone else to do all the things l do for him, l think l am grieving for the life we had, the fun and laughter, l love my job and my boss is very understanding and said come back when you can, thankyou for reading this
You’re definitely not alone there. I can barely have a sensible conversation with my wife nowadays, her memory is so bad that two minutes into a conversation she can forget what was said at the start, and then she starts confabulating, it’s also often like partaking in one of those spaceship conversations with a ten second delay before she answers.
I just miss who she was, and who she can never be again, I miss any sort of physical contact, for nearly fifty years I’ve gone to sleep with a boob in one hand and a warm bum nestled in my groin: we sleep in different rooms now, she can only sleep on her back and she snores, and whilst nothing ever wakes me up, I have to be able to get to sleep in the first place. I can’t go to bed first, I have to put her to bed.
I shouldn’t really say “unfortunately”, but unfortunately, apart from her MS she’s as fit as a fiddle, and going on her family history she probably has at least another 15 years yet.
Your boss at least sounds like a godsend.
That’s just my viewpoint as a man. At a guess, there’ll be plenty of sympatico ladies along tomorrow to offer advice and hugs and all that stuff.
Welcome to the forum and thank you so much for sharing your caring story, it sounds like an incredibly hard situation. I know you will find lots of carers on this forum who can understand your situation and share your experience.
Please do have a look around the forum and find the different sections we have and just ask if you need any help and advice.
A couple of resources which may be useful to you:
Our coronavirus advice pages: https://www.carersuk.org/oronavirus. We are constantly updating these with advice for carers including:
- Making a plan
- Working and caring
- A-Z of changes to benefits, assessments and support – COVID-19
- Managing food and medication
- Coronavirus - protecting your mental wellbeing
We have also started weekly online meetups for carers to connect and spend some time talking to people who understand what you’re going through. There is more information about these here: Our Forum | Carers UK
I hope this helps.
Welcome to the forum.
Dementia means that someone isn’t thinking logically, of course he wants you to do everything, because he is thinking about himself, his ability to see things from your point of view has gone.
Caring has to be a balance.
If there is a large age difference, that is even more important, because one day you will be on your own, and need a support network and a job to earn a living.
It is NOT his choice about who cares for him. YOU choose how much you can and want to care for him. Then he has to have someone else.
There are ways of reducing your workload, you are now doing the work of two people, something has to give!
Do you have a dishwasher, a tumble dryer, a walk in shower?
Is there anything you would like, but can’t afford right now?
Are you claiming Attendance Allowance? Claiming exemption from Council Tax for him as he has what is classified as “severe mental impairment”? If not, make sure you claim, and make sure your council backdates your claim to the date of diagnosis. Someone has been repaid over £7,000!
That sounds really tough.
What about what you need. I honestly don’t see why you should have to give up your job. If you enjoy it, I think it would be a big regret.
thank you for your posts, l feel l am on my own, but some of the posts on here are so sad, l should count my blessings, l hope you all living your best life, l should be getting him allowances soon, and that should make things better, he thinks that he will get better and life will return to normal, he has been told a few times , for the first time l had to see to him at night and l guess it will not be the last, thank you all x
Eileen, have you actually applied for the benefits? Please don’t put it off, they will make a real difference.
Also think about what would make life easier for you around the home. When I was disabled after a car accident I had to make some really hard decisions about my garden. All the flower beds had to go, and I had a wider patio built so I could always sit outside. Now the lawn just needs a quick cut, it’s so much easier. The benefits could help you pay to have your lawn cut regularly, for example.
things have changed quite a lot, my husband is now end of life, sadly, he knows but forgets , no pain just a body dying of old age , so it could be anyone of his ailments that is running its course, doctors say we have about a month left, cant stand or walk or sit up without help, carers are wonderful and make him smile, washing him.
Sorry to hear your husband is end of life.
Pleased you have support from care workers.
Take comfort that he is not in pain.
We are here when you need us.
I’m afraid now is the time to consider which funeral director to use. Easier now than in an emergency through tears. Try to take a bit of time for yourself when the carers are there, a short walk, or bath. If there is anything you are unsure of that we might be able to help with, just ask.
sadly my husband has died, and it was a painful and a death at home was what he wanted, l dont think l have ever seen something so horrible ,. l am numb, he has been gone for 5 weeks, and l am due to go back to work next week, l cant stay here , the funeral was just as he wanted and now l am empty x
Eileen, I’m sorry for your loss, at least your husband isn’t suffering any more.
I was widowed when just 54, so I’m speaking from experience. Do NOT make ANY important decisions for at least a year, possibly longer. I could have sold absolutely everything in the first few months, so glad I didn’t.
Ask your GP to sign you off work for a while, or go back part time, you haven’t begun to process everything that you’ve been through.
I just wanted to do the “right thing” but what was that?
I would recommend a book called “Starting Again” by Sarah Litvinoff, to help find out what you want for your future. It’s primarily designed for divorcees, but so relevant to us too. It’s really easy to read, you can have it by your bedside, read a bit, think a bit.
I would also suggest that you go away for a few days, even if it’s just to a Premier Inn. Then you can eat, sleep, meander round doing nothing, but it will give you the headspace you need. Doesn’t have to be a long way away, not a holiday, just time to “tread water”.
Eileen, sad to hear of your loss. I too lost my husband 28months ago. You naturally will have all sorts of emotions. Took me a while to sort out in my head what needed doing, how to cope with the things he did. Takes baby steps. Eventually you will adjust, although at the moment you most likely don’t feel that. Happier memories will emerge.