Be careful what you wish for.

In 1987 Ray and I were looking forward to spending our second Christmas together. But we decided that was what we wanted to do, spend it together, not with our families.

So, rather than upset anybody, we told Ray’s family we were going to mine, and my family we were going to his …… and we stayed at home and didn’t answer the phone! We had a great time just eating, drinking, going to the pub etc. but little did we know what was to follow.

On 30th November 1988 (four days after Ray’s 38th birthday) I came home from work to find him lying on the floor. He’d had a brain haemorrhage within minutes of me going out of the door and lain there all day.

I remember every single detail of that day, it’s like a recording stored in my brain, and I’ll never forget it. Calling the ambulance, running in and out looking for it, reassuring Ray, packing him a bag, answering the phone to his work colleague who’d been trying to contact him all day ……… everything! Going to A&E, where it was clear they didn’t expect him to live. Ringing his mother (who I’d only met a couple of times). Seeing him admitted to a ward and then going home, alone, to clear up! An awful night.

But neither of us had any idea how much our lives were going to change.

Ray was in hospital for three months. We spent Christmas in the hospital. Probably my most emotional Christmas ever. I remember sitting next to his bed when the staff came round singing carols. A bittersweet memory.

We spent three months in Lewisham hospital. I say ‘we’ advisedly because, whilst Ray was technically the patient, I was there every minute that I could be i.e. when the ward was open and I was not at work. At the end of that time we were rehoused in a one bedroom ground floor flat. We’d been living in a basement flat and, whilst I could get him down there (once) getting him back out would have been a different matter!

The hospital social worker told me that if I had not been prepared to look after Ray he would have not been able to be discharged and would have had to go into a home. Some friends and colleagues advised me against spending all of my time at the hospital and agreeing to be his carer. But, as always, I knew best …… or did I?

24 years later we are still together.

We never married (not at all bothered by that, I refer to him as my husband because it simplifies matters) although i do regret we never had kids. We are regarded as a couple because we live together. But we are not a couple in any conventional sense.

My role is more that of being a mother to a very strong willed, 6 foot 4 inch, toddler (paralysed down one side) who has a great deal of difficulty making himself understood.

The frustration this causes can lead to Ray becoming aggressive and abusive. Although he has a lot of trouble ‘finding’ words he’s never had a problem finding “Fuck Off!”.

Ray likes a drink. ‘A’ drink is a bit of an understatement though. He gets drunk, sometimes very drunk. He falls over and cannot get up. Who picks him up? Me!

He’s insulin dependent diabetic, the alcohol lowers his blood sugar and he has hypo attacks which can lead to him going into a diabetic coma. Who deals with these? Have a guess!

Ray hates hospitals with a passion. Actually, that’s not true. He has a lot of respect and gratitude for hospitals and the medical profession but he is terrified of having to go back into hospital. So, when he continued to be in severe pain after one fall, it took me days to persuade him to go to A+E. When we finally went X rays revealed not only had he broken his elbow in his paralysed arm, there was evidence of previous breaks in the same area. Subsequent tests showed he also has osteoporosis. When the hypos have been so bad that I’ve been unable to bring him round and had to call an ambulance we’ve had the farcical situation as he ‘comes to’ of him being polite and friendly to the ambulance staff and threatening to kill me when they look the other way!

Do you watch detective programmes? Have you heard of luminol? If our bungalow was ever sprayed with it they’d be able to turn off all the lights for miles around. Body fluids are us!

Don’t get me wrong. I love Ray, I might not always LIKE him but I do love him. I also understand him, his problems and how he feels. Can you imagine how it must feel to be totally reliant on another person? I’d hate it and I’m sure Ray does too.

But don’t worry, we live in a welfare state so there’ll be plenty of money to look after him won’t there?

Ray gets the higher level mobility allowance as he can only walk very short distances, very slowly and with a lot of difficulty. He gets disability living allowance as he’s unable to work. We’re very grateful for these.

My concern is around the personal care component. The ‘disabled person’ has to complete a long questionnaire describing their problems in order to claim this. Imagine if you became disabled and were reliant on others then had to fill out a form saying all the things you can’t do. Having spent hours and hours trying to build up Ray’s self esteem he would not say how bad things were on the form so he ended up with the princely sum of £20.55 a week to pay for his personal care. There was nothing I could do about this. HE has to submit the claim. He has just agreed to reapply and has now completed the form giving an honest (and very depressing) picture of his needs.

Meanwhile some people who do not need a high level of care have no problem saying that they do because they have no self esteem problems and view it as a way of gaining money. I know they exist be cause I know some of them!

BTW Ray’s care component is only 25 pence a week more than child benefit for the first child.

Oh, and what do I get for caring for Ray? Nothing. Not a penny.

And there are millions of people like me in this country who give up their time, and in some ways their lives, to caring for others. Sometimes because they want to, sometimes because they have to as there isn’t anyone else, mostly (probably) a combination of both.

Ray was used to me going to work and we found ways that allowed me to do that. Since I had to stop working because of my health I’ve continued to go out during the day (we learned the importance of my having ‘me’ time when I had reactive depression) but he wants me here in the evenings and night time.

And we have spent every one of the last 24 Christmases at home, alone. Well it was what we wanted!

Can you imagine being the sole carer for someone who is completely reliant on you for 24 years? I have NEVER been at home on my own during that time!

So I don’t do housework. I don’t do ironing. I don’t do any of those ‘womanly’ tasks.

I walk, I row, I climb steps, I lift weights, I hit a punchbag and I laugh ……….. a lot!!!!

Life is what you make of it, and I’m going to make as much of mine as I possibly can!

5 responses to “Be careful what you wish for.”

  1. You are fantastic, I know I could never do what you have done these last 24 years. I wish we still lived close enough for Gary to kidnap Ray for a few hours, into the garden even! I barely do those tasks (definitely not ironing! with no excuse!

    It’s ridiculous that some people have the gaul to claim what they are not entitled to & I know a few, those that can afford to sit in Costa Coffee & buy the whole family drinks when I know full well that at least one of them if not both could but have chosen not to earn a penny! When Gary was off work with his back we only needed help for a short time but couldnt get any as we have our own house & I worked too many hours! I did try explaining the reason I was working so many hours was i couldn’t not make up the short fall as we still had to pay the bills, mortgage, eat, etc!

    I’m glad Rays applied again as difficult as it was it will hopefully provide more help.

    • Oh so do I!!!!! Going back to memories though, you know what he’s like about hospitals. Remember when he fell and poured that boiling hot sugar filled cappuccino down his arm and the HUGE blisters? Nurse Lindsay to the rescue (even though he wasn’t a child, chronologically speaking, and it wasn’t a liver!!!!) x

      • Ouch, it was terrible. Poor thing.
        Aah our little garden was so sweet. Charlotte swinging, making Gary & Ray pretend to swim, dance, etc!! She was such a bossy boots!! She didnt seem to mind Ray doing it sitting down & doing it with only one arm!!

  2. I knew you had something very special about you from the moment I met you. You have told me your story before but it doesn’t make it any less amazing to read. I didn’t realise you and Ray weren’t married though that really shocked me and made me laugh that you have conveniently left that out of all the chats we’ve had! Your story is so humbling I bet you have had to bite your lip on many ocassions listening to other people’s gripes. I hope I can remain a c,one friend of yours and if I could have the privilege of being able to make you laugh sometimes then that is good enough for me. You have really made me laugh at times! Love you Gill. The phrase “Keep calm and carry on” must have been made for you but if for a second a thought of something I could do popped into your brain please share it with me. Pinot the personal care though mate if you don’t mind because I’ve just started that with ma in law and I don’t much care for it! (-;

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