Thursday, 10 February 2011

A carer is for life...not just for Christmas

Care is a funny little word. My mother used to say to us when on our way to school... "Take care crossing the road." or when my brothers went travelling..."Take care and keep in touch." Take care meant keep out of danger or trouble. As a teenager when my boyfriend was dumping me came the words..."I really care about you but..." Care had a totally different meaning then.

I married David on my birthday so he would never forget either! Both second time rounders, nothing unusual except we were a bit different.
David had served Queen and country in the Royal Navy, man and boy for over 20 years. Whilst chasing a Russian war ship across the bay of Biscay their ship was hit by a wave and his back was broken. Anyone who has crossed the Bay will know just how terrifyingly wild it can be. He spent many years in and out of Military hospitals until he was finally discharged on medical grounds. He was given a bit of paper which told the world he 'wasn't fit for employment'. He was 36. Sadly in those days, there was no practical help for 'Our Heroes', they just got on with life as best they could. He was awarded a War Pension for injuries received and any subsequent disabilities incurred due to the accident. Door slammed. David was in the fortunate position, if that's what you want to call it, of still being able to walk. Walk like an old man almost dragging his legs along with him. Couldn't be left behind!

Just when things couldn't get any worse.. along I came!!! He reminds me, often, I was wearing a pair of bright green leggings and baggy tee shirt. I looked like Kermit! I thought I looked trendy!

In those early days we muddled along finding a level we could both manage. We had a lovely little cottage, in North Yorkshire, which had a stair lift to get to the upstairs bathroom and bedrooms. Very useful for taking the washing up or moving furniture down! Over time, with him needing more and more equipment, the cottage shrank. A Yorkshire man would NEVER leave Yorkshire but we did and came to Scotland 8 years ago. We joined Terry Wogan's  'beige brigade of bungalow owners' and we love it!! I was by now his full time carer.

David has Ankylosing Spondylitis as well as Cervical Spondylosis which are both painful, degenerating, conditions of the spine. The injury to his spine has long since healed up but the nerves have forgotten to switch off. We had many, many trips to hospital for spinal injections. He underwent physio which left him worse than before. How many of us have been to physio with a bad neck and come out limping??!!  We love them really but don't use their services anymore.

David goes to bed in pain, sleeps? in pain and wakes in pain. The only way to describe it is like toothache. The sort when you have an abscess throbbing and aching like hell. Nothing will help and you are begging for a dental appointment. Imagine that day in day out for the rest of your life and you are getting warm. I can't imagine but I know how it affects his life. We call them muscle spasms but others call them cramp. All over his body with each muscle tightening and pulling in a different direction. Excruciatingly painful and he crawls along the floor banging his head and screaming at me to make it stop. It doesn't.
Little feeling from the waist down, hands that can't grip, back that won't bend but tears that will always fall. He has to wear 'nappies' as his bottom leaks. He takes a pill to make him wee and another to stop him weeing too much. He takes muscle relaxants and anti depressants for the side effects. He wears morphine patches continuously with morphine tablets to top up. We store some of them in an old Harrod's biscuit tin, the rest fill 2 cupboards. He has bad days and worse days.

On a bad day he laughs, we go out and he buys me flowers. We book flights to go to Canada to see our children because he knows how much I miss them. He knows he will never be able to go again and how painful the journey will be but he does it for me. On a worse day he wants to die. I wash him, dress him, cut up his food and hold his hand. I refuse to do everything and leave him some dignity. This is being a carer for someone with chronic pain.
He suffers with depression. Wouldn't you? He had counselling once from the CPN who came to the house. After 4 weeks she had a Eureka moment. She worked out that his pain was creating his depression and she called it 'reactive depression.' She could cope with bereavement, job loss and divorce as these were all situations that would get better. David would never get better. We already knew that. She stopped coming soon after as she realised he was incurable. Door slam. He did go for respite to a Military establishment on a couple of occasions which he loved. Due to his age and injuries they soon realised he would never get better so that door was slammed too. He cried that day.
Over many years I have joined carer's groups, attended meetings and conferences. The only certainty about being a carer is the statutory assessment of needs. I should have framed all mine and hung them like certificates. They are worthless bits of paper which guarantee you....nothing. Carer's Allowance is only paid if you get no other benefit and even then its worth is only an insult.
Carers deserve far more than leaflets telling them where to go for support and counselling. If they want a break let them go away but don't stick their loved one in an old people's home. I used to have help, just twice a week, for showering. Gave me a little break but clearing up the bathroom after cancelled out that break. When we moved down here, from up north, we decided to ask for help again. Social worker came out and did his assessment and offered us 3 showers a week. Hmmmm 2 would be fine and we waited. We waited a bit more and then some longer more. Calls were made to Social Works and the promise was it would be soon. Nearly 3 months went past and we were then told how difficult it was to get staff out to the 'rurals.' We live 7 miles from a main town and where Social Works have an office not on the moon. A suggestion was made that we tried Direct payments. Didn't like the look of that as if they had trouble recruiting people what hope did we have of finding anyone? This was before Camerout's Big Society'. Of course as a family member I can't do it for money.
Eventually we were allocated a team and the hours. 11am Tuesday and 11am Thursday. Ah, David has hospital on Thursdays could we change it to an earlier slot? NO. Could we have longer than 48 hours between showers to spread my load? NO. That's your allocated time and day...take it or leave it. We left it.
Ms Robison's words sounded in my ears...." Carers are equal partners in the care of their loved ones and their needs must be acknowledged and met by NHS and Social Service Systems."  Yes they must but they are not.
I went to a hustings before the last election and one MSP stood up and actually said that all respite would be tailor made and by 2011 those in 'greatest need' would get an annual entitlement!! I didn't vote for his party! I still don't know who those in greatest need are....probably those who have the most money to pay? I don't know what the annual entitlement is either? 

Carers need recognition. Not just words telling us how wonderful we are and we save the Government £7.68 billion. I know I am wonderful, David tells me.
Being disabled is a constant battle in itself. Trying to get on a train on the other side of the platform. Steps and a bridge which you can;t climb. Hitting dropped kerbs that aren't and almost catapulting David out of his chair. We laughed at that...a painful laugh. Access for wheelchairs which is gravel...hopeless unless your chair is electric. His chair does have its uses though. Horticultural shows where I can pile him high with plants, pots and other delights!
One helpful social worker suggested I bought a motor which would give it a bit of oumph but the motor itself was so heavy I could barely lift it into the car. I like help like that especially as it cost several hundred pounds. One day he will be in a wheelchair permanently but for now I try to give him all the encouragement to live a 'normal' life. 
I said we were a bit different. I lost my sight 26 years ago, registered blind and don't even know what David looks like. I don't think of him as a cripple. He is my husband, a kind and gentle man...most of the time. To me he will always be my Hero.