Hello carers world.

Socialise and chat about other areas of your life
Hello everyone.
I am new. Although already had help on the forum. Which is wonderful!
Just a quick introduction. I care for my husband, he lost one eye due to a detached retina when our son was a few weeks old. (Now 28)
His remaining eye, struggled to cope in keeping him at work. Then overnight, it gave up. He has a small tunnel of foggy sight in one eye, so Severely Sight Impaired.
We have had, Nothing, no help, Citizens Advice took 2 hours to tell us to sell our home, spend its residue, then apply for emergency housing. Really helpful.
I had to find my own way through the benefit system, getting full PIP and Carers, and we just inhertited from my lovely Mum enough to finish the mortgage. But, we doubt we can cope to keep our home.
The Blind Assosiation, can only offer a dog, white stick, and nothing more. No training for my blind husband. No counciling. We have been left to deal with it our new life alone as a family.
Fine. We can cope. Our two kids at 17 and 28 are wonderful. But have their own lives.
Our friends are amazing. My husband was a motorcyclist. They take him out on his own bike. Trips, and weekends away.
We have learned, its human kindness we are rich in. Sounds really naff I know. I do all the driving now, something I hate. I watch, listen, and care for my husband constantly.
We are learning together. But my life as a seperate person has gone, I am now always two, with a man attached to MY arm, needing me, not me holding his hand.
I hope I find useful coping ideas with you guys. And a chance to share.
I've been a carer for 37 years, since my son was brain damaged at birth. Also cared, in various ways, for nine other family members. It's absolutely VITAL to your own well being that you are not always together. You need some dedicated "Me" time every week to do all those things our husband's never know about or understand!
Has your husband had a Needs Assessment from Social Services? Have you had a Carers Assessment from SS? There may be services in your area which are not advertised, available by referral only. Each area is different.
How old is your husband? Has he been put in touch with anyone else in your area with sight problems?
have either of you had proper counselling to help you adjust? Your GP might be able to refer you.
Carers UK has a brilliant helpline, phone them, or email if you can't get through, and ask them what you should be entitled to in terms of both money and help and support.
Hi Bowlingbun.
I am 56. Hubby is 53. (Toyboy!)
We have had nothing. No help. We have both said, we have been abandoned. Someone came from the hospital and bought a white stick to give my husband and said, why dont you get a dog?
When his friends take him out, for a bike run. And they even took him camping in the summer. I use that time to catch up on my tv. Or go clothes shopping.
To be honest, my year this year has been horrible. I used to travel 45miles each way to my mum, twice a week. Help her shop, bathe, my step dad did what I couldnt. Then hubby went blind! So hubby came along too! But
Mum died in Nov 2015, dad had a serious stroke and went into a nursing home. So had him to visit twice a week instead!
I sorted probate, sorted their house to sell, dad died in Dec just gone. His funeral is next week. Their house just sold.
And I am just about coping. I cry a lot. Alone.
But this is not a sorry for myself sob story I promise. I am coping. And my husband is wonderful.
I will look at what you suggest. See if I cant start up something, maybe we are lost on someones desk!
It's no wonder you are struggling right now. However old you are losing parents, sorting out the family home etc. is a very sad and emotional time for a million reasons, and then you dive over what I call the Cliff of Tiredness. Just when you are supposed to be taking it more gently then a whole load more stuff descends on you. There is only so much anyone can cope with before it gets too much. It's OK to cry a lot, don't see it as failure. Try to see those tears as getting rid of all the rubbish that's happened recently.
I know it sounds awful, but I was so relieved when the last desperately frail, ill parent passed away. At one stage, as well as our son with severe learning difficulties, we were supporting all four parents, all entitled to highest DLA Care, all telling SSD that they could "manage" because we lived locally! At least you won't feel quite so torn in all directions this year.
Maybe ring Social Services today asking for the assessments, because they won't be able to do them immediately, then don't do much else until after the funeral is over?
Would your husband like a Guide Dog? I know nothing about the system to get one, but he's a relatively young man who might enjoy the extra freedom a dog would give him.
In my town there used to be a training centre for newly blind people, there were always people with white sticks in the high street. It's closed down now, but it might be worth finding out whether there is a somewhere in your area which can offer this. Social Services should be able to find more information for you.
Hi Lynn
We each of us have within us a 'stress bucket'. It's a fixed size and as each new bit of stress arrives it fills up a bit more. Like with most buckets when the level reaches the top even one drip more incoming causes an overflow. If a lot more stress arrives it overflows a lot!

The level can be reduced in various ways, talking to someone ( a friend or a counsellor), a good cry, some me-time, some practical help, some exercise, some meditation, all sorts of things. But there are times in life when just too much stress arrives, and thats where you are at the moment. You are still in the very early stages of bereavement for Dad and all the practical tasks that come with that just when we don't need more to do.

Be kind and gentle with yourself for a few days then have a good think about which are your biggest problems and put them in priority order. Aim to hit just one or 2, the rest can wait.

Then, when you are ready, go find help. Unfortunately no one offers anything freely these days, especially to those who look like they are coping! You and hubby, he can talk and make phone calls can't he?, need to assertive with NHS and SS but also look to charities and specialist groups in your area. A quick Google search bought up at least 4 national charites most of which have helplines and support groups

Just remember to pace yourself. You've had a lot to cope with, you will get there in time
Xx
MrsA
Hi Lynn You sound like a very practical, organised and special lady and what a lot of shocks and trauma you have gone through lately.
I put 'help for newly blind' into Google and quite a few sites came up, RNIB of course but other charities and help such as 'Action for the Blind' whom I have heard of before. Some were selling products, some were offering suggestions but worth exploring everything.
My mum's sight deteriorated badly during the last couple of years of her life and as she was a bit fixated on time, I bought her a 'talking clock' and also a 'talking watch' which helped for a while , until she couldn't cope with pressing buttons any more.
Do get those assessments and also make sure hubby gets a visit from an Occupational Therapist because they can provide helpful equipment.(Free, on loan for as long as needed).
Do think about that dog too. Your hubby is still young enough to regain a lot of independence with the help of a faithful companion and you will too once you also learn to trust the dog.
How about a personal alarm too? Worn on the wrist or round the neck and hired for a few pounds a week, available through SS or from LA or more expensive maybe from other sources. That might give you both a bit of confidence that if hubby was alone and something did go wrong he could press it and the operator would call the appropriate aid.
I know there's a lot of 'stuff' out there because I was looking for it for my mum. most of it not good for a 99 year old lady who was also immobile but for your hubby, yes. Talking books, talking newspapers, talking telephones, beeping mugs, divided plates and more. Perhaps your lovely children would get on their computers and start looking?
You've had a horrible time and must be worn out but your core strength shines through and I'm sure both your husband and you will manage to adapt and make the best of a rotten deal.
All the best
E.