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	TX: 10.04.06 - Multiple sclerosis week:聽 A Day In The Life of Paul and Heather Oakley聽

	Downloaded from www.bbc.co.uk/radio4 A day in the life of Paul and Heather Oakley Paul sleeps on an inflated ripple mattress it is 3'6" wide and lies on top of our 5' double bed, it's pushed onto the bed a bit to prevent it falling off. I used to sleep in the 1"1/2' gap left on my side of the bed (the width of my hips). About 4 years ago, I had a cold and decided I needed a good night's sleep, so I retired to the floor, 2 陆' gap and have remained there ever since. At least I can roll over in the night. Something we all take for granted, but something impossible for Paul. I need to be near to Paul to hear him, when he wakes me up to move him, or the pillows, or suction out his excess liquid in his throat which he can't swallow. The alarm goes off at 7am. Lying on my thin mattress, I can pull the curtain cord and let the light in. Next can I hear Paul breathing? Yes. Relief, then disappointment for him, (he doesn't want to wake up) and me, another day begins "morning." Routine is what keeps Paul alive, and living with us, me and our two daughters Ella age 13 and Hannah age 8. And they are why we carry on, making life as normal as possible. But we all live with the time bomb, knowing one day Paul won't be here, and he wonders what he'll miss. I switch Paul's radio on, and take off Paul's quilt, straighten his legs, it's hard work because they're stiff, they've been in the same position all night bent up to his right side. A little pressure down on the legs stops the spasms. I put the sheet and blanket over him. Turn the pillow over under his head, and dip a pink mouth sponge into a water paste, which looks like thick wallpaper paste, then pop it into his mouth to refresh it. Thickened liquids are easier for the throat muscles to deal with because it moves slower. Paul is not meant to have anything by mouth. On his last visit from a speak therapist, he told Paul to have "nil by mouth" because the therapist is a male and not a female, Paul ignores the advice and mouths the words "toss pot!" Although I restrict the wallpaper paste to a minimum, Paul can and does choke. A morning of pre school general household chaos ensues until at 8.20, I'm ready to set Paul up for the morning. I lower the inclined bed raised from 45 degrees to flat, so I can pull Paul up the bed. Our bed is turned around the headboard is at Paul's feet. So I can get behind Paul, put my hands under his arms and pull, making sure I don't pull the shoulder sockets out, there are no longer any muscles keeping the bones in place. At the side of the bed, I push his pelvis over to the centre of the bed and reposition the bed pad. I elevate Paul's upper body again to 45 degrees using an air pressure bed raiser to prevent Paul's lungs filling with fluid. I wouldn't be able to move Paul up the bed by myself if we used a mechanical bed at home. I use an electric toothbrush, with a little paste (no water) to clean his teeth then more of the water paste to rinse. Paul can no longer spit. I wipe the muck from each eye, with separate tissues. He can't sleep with his eyes properly shut anymore and they don't clean themselves as they should do. I wipe his face with a wet wipe, then give him an electric shave before applying E45 cream. His skin on his face gets very sore; a reaction to body temperature, so Paul prefers to live in a cool environment. Then drugs, which are put down a PEG a tube which goes straight into his tummy. Most drugs are now in liquid form, but I still crush tablets with a pestle and mortar, mixed with water and pushed down a needle - less syringe into the PEG. There are drugs which Paul absorbs through the skin to reduce his own fluids and prevent choking of the lungs filling with liquid. I empty the urine which has collected overnight in the drainage bay. Then I set up a balanced liquid feed which is fed through a pump at a certain rate, straight into his tummy via the PEG. It will last until 6pm. Just before leaving for the school run with our youngest and for my part time job at her school, I bend Paul's legs up again to his right a pillow in between the two legs to prevent pressure sores. I then leave Paul to listen to the radio until my return at 12.45pm. Monday and Friday are toilet and bath days, barring any other incontinence accidents. The bladder is far easier to manage than the bowels. Paul has been using a catheter for over 15 years. The first few times Paul cried. At first he used an intermittent catheter which he managed to do himself. Then I'd do this for him, when his hand no longer worked. Catheters cause repeated urine infection. When his sphincter muscle at the base of the bladder stopped working an in-dwelling catheter, which is changed every 3 months was inserted. So when I get back from my paid job, I give Paul the once over before I use the loo. Then I start the toileting procedure. It's all to do with timing like cooking. I detach the urine drainage bay. I detach the PEG feed - flush it through with a syringe of water or it sets solid in the PEG like concrete. Lower the bed flat, while I roll Paul from side to side to place a bath sling under his body, pull off his underpants and using KY jelly put suppositories in Paul's bottom to induce the lower bowel to work. He is on a bed pad which is placed between Paul and the sling which when hoisted up will keep all contained hopefully. I raise the head of the bed up again. Then I have my lunch and tell Paul news. I have a moveable hoist, so after a while, when things start to move I attach Paul's sling, which will support him in the hoist. It's electric so at the press of a button Paul lifts up into a sitting position. I steer the hoist through to the bathroom and over the loo. We have a ceiling rack hoist in the bathroom. I lower Paul onto the loo, transfer the sling loops onto the ceiling host and remove the moveable hoist back to the bedroom, which is large but full of boxes of feed, medical equipment, oxygen cylinders, my female nick knacks, Paul's Chelsea regalia, washing airing on the radiator etc. I remove the pad, and manually help to get rid of the rest of the pooh. Then Paul is hoisted up and over the bath, where I shower his bottom clean. Then I clean the bath and run a warm (not too warm) bath. Paul's exhausted from trying to hold his heavy head up. I take Paul's T shirt off. It's hard when he can't help, he can't hold his head up and he has been constantly dribbling. You're fighting gently with arms, hands and fingers and the taut straps of the sling. Once in the bath, I can detach the sling from the hoist. I can wash Paul's body of skin and bone properly all over, but it can't be for long. I re attach the sling loops to the hoist and lift Paul clear of the water, dry him, as quickly as possible. But the sling is wet. Suspended Paul moves over to the small floor space, where I have put his indoor wheelchair, covered with a towel. Brakes on, I lower Paul into the wheelchair, pushing Paul in the sling into a safe position on the chair. Paul will have no support after I have detached the sling, so he needs to be well back in the chair. Brakes off, I push the wheelchair into the bedroom, where I reconnect the sling to the moveable hoist, and life Paul up and over the bed. I have covered the bed with thick plastic and a towel to prevent the bed getting damp. I lower Paul and remove the damp sling by rolling Paul from side to side. As quickly as possible I dry Paul, remove the towel and plastic. I've chosen from an extensive wardrobe of boilable white cotton T shirt's and pants. I dress him, again by rolling him. He has moved down the bed by now and I need to pull him up the bed again from behind his head. I then reattach the PEG to the pump and feed. I put more cream on his face and lips and I raise the bed again to a 45 degree angle. Paul is now toileted and clean, but exhausted. I clean and bleach the bath, Paul has had MRSA before and we all use the bath. I'm off to pick up our youngest from school. The girls and I will be in and out to see Paul in the course of the evening. Paul will only be able to observe the practicing of musical instruments by the girls, the gossip, share watching a TV programme, being shown a piece of school work of the latest acquisition or being talked at. Paul, when he is in good form, can mouth a few words, raise his eyebrows, and laugh silently which will cause him to choke, or screw his face up in desperate sorrow. When Paul's not so good, it's hard to understand him and a slight flicker of the eye lids is a yes or no in answer to our questions. All are exhausting for him. At some convenient moment in the day I will put Paul's splint on his left hand for a couple of hours. This is to prevent his hand clenching into a fist permanently. Paul has more drugs at 6pm and I'll stop the feed and switch the TV on. Paul's eyesight isn't good, but it's a change from the radio. Paul used the RNIB talking books service for years, but found it becoming impossible to move the switch and would often fall asleep. The radio is live and present, and keeps Paul conscious of what is happening outside the walls of his bedroom. At 9pm, I put on a 1 陆 litre plastic bottle of water into the pump so the water goes through the PEG to hydrate Paul overnight. I am convinced this is what keeps Paul alive. At 10pm, there is another round of drugs before emptying the drainage bag of urine. More cream on the face and lips, then I bend his legs up into his sleeping position and put on his quilt. I make him as comfortable as I can before I get ready for bed. As I'm lying on my mattress trying to get to sleep, I'm conscious of the noise from the pump and the ripple air mattress and Paul's erratic breathing. After a while we fall asleep. We've made it through another day, and I'm wondering if it's tomorrow, when our life will change. Will it be worse? Paul was diagnosed with MS when he was 29. At first the vision in his eye had been affected. He spent a year going to Moorfield's Eye Hospital . By the end, he had started to have pins and needles in his arms and hands, and started to stumble when walking. I remember picking him up and him telling me the good news: "he didn't have a brain tumour." Paul was permanently in a wheelchair from his 30 th birthday. He continued to work by applying for and obtaining jobs according to his progressive disability, up until our youngest daughter was two. We have excellent support from our local hospice St Joseph's, where Paul goes for respite, arranged around the school holidays, so I and the girls can escape the constraints of caring. Paul is not so lucky - he can't escape. Our local GP, district nurses and counselling service are there if we need them, but we have jointly agreed as a family, that caring for Paul at home, with the risks of leaving him alone for a maximum of 4 hours, and the strain it places on us as a family is better than our home (a ground floor flat) became a focal point for constant comings and goings of care professionals. However, every Tuesday for 3 陆 years we have a devoted Marie Curie nurse. Carole comes for 7 hours. Very fortunately for Paul a fellow Chelsea fan. She started the job being told it would last 6 months. It is my free time knowing Paul is being cared for. This might seem like one big moan from start to finish, and a lot to bear for the girls and myself. But Paul has shown such courage, great humour and compassion for other people with bad diseases. We have never considered giving up. This is where he belongs, with us. Back to the Transcripts homepage Back to the You and Yours homepage The 麻豆约拍 is not responsible for external websites

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