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My caring role – hell, but I love him.
I care for my partner who is an uncontrolled epileptic. His siezures come fast and unannounced, but he does have the occasional warning. I have to prevent him from injuring himself on edges, floors, walls etc. As he is uncontrolled and has no warnings – most of the time – I have to be with him 24/7. Even during the night when he wakes up after a sz, I have to get up, I then have to stay awake until our daughter has gone to bed each night, and then I can follow my OH when he goes to bed. He manages to get some sleep during the day that he needs. During the night there is the occasional need to change the bedding.
I shop when he is asleep during the day, and clean when I can – usually when he is on a good day or when he is asleep.
I cook meals and throw most away as he is unable to eat before during or after a sz, and end up wasting so much.
I’m tired, worn down, cry a lot, worried, happy, in love. As for a social life – whats one of them ?
Despite everything – I’m very happy and love him to bits, which is why I worry so much and why I care for him. I wouldn’t change it for all the tea in china.
I’ve just ‘come of age’ as a carer, I’ve been looking after my Mum for 21 years.
My Dad died aged 63, his first and last heart attack – I was still living at home and Mum went to pieces, first mentally and then physically. She started to fall quite a bit, a trip to the opticians brought the bad news – glaucoma and AMD, unfortunately one eye had gone completely – Mum never had regular eye tests which would have picked up the problem earlier.
She had an op on her ‘good eye’, they fitted a drain to help the eye pressure (we christened it the ‘cat flap’) but gradually her sight has deteriorated to the point she’s registered partially sighted, in fact she can only see light now. Her mobility has also gone, we use a wheelchair now to get her around outside, inside she hangs on to me and the furniture – she’s 87 now and her arms and muscles are wasting away (despite a good appetite) so it’s getting harder to keep her mobile.
I was an office manager up to 7 years ago – juggling a full time job and caring was too much, I almost burnt out – when you’re doing your ironing at 3am in the morning because it’s the only time you’ve got free then it’s time to take stock. My employer wasn’t too helpful, I took 3 months sick leave and was offered a 2 year unpaid ‘career break’ which was about as much use as a chocolate teapot so I left and became a full time carer.
It’s not been easy, mentally and financially – carer benefits (if you can call them that) are pathetic, we save the country £b’s a year and we get £50 a week in return. Fortunately I’ve had good support from online carer forums, carers often feel isolated, knowing there’s someone out there in cyberspace who knows what you’re going through is a big help.
It’s been hard work but given the opportunity I’d do it all again, I promised Mum she’d never go into residential care and I intend to keep that promise.
So this caring lark… I believe it’s like many things in life, it sneaks up on you and you either rise to the challenge or, well, there is no ‘or’ really. You just have to do it if you love the people you care for. Originally, about 10 years ago, my Mum wound up on steroids to treat something called temporal arteritis. This in turn lead to osteoporosis – and then, about 4 and a half years ago she was diagnosed with parkinsons – though that was in evidence in her for a couple of years previous to that diagnosis. Since then we’ve seen the specialist parkinsons nurse on 2 occasions for a couple of menial things. Seems they are very overworked and therefore hard to get hold of. We do, however, have regular trips up the N&N hospital (which at one time was just over the road from our house in the heart of Norwich) to see her Neurologist. We’ve also been fortunate enough to have had access to a good Occupational Therapist which means we’ve got hand rails for her round the house, and various other modifications to help out.
Before my Mum was my primary concern I looked after my Aunt who had bowel cancer. That was an eye opener I can tell you. The good thing is I’d always done a little bit of cooking, so when the ladies of the house could no longer see to all things culinary I didn’t have too much problem slipping into the role of head chef. I can’t really remember how long I looked after my Aunt as she was having Chemo for quite a while. Eventually, towards the end of her tenure on this earth, I was pretty much doing 20 hours+ a day looking after my Mum and my Aunt. I vaguely remember collapsing on my bed most nights and then just waking up when someone called me during the night. That was probably the hardest and longest and most exhausting period of caring I’ve done to date.
So where are we now? Well, my wife’s got Chronic Fatigue Syndrome, which doesn’t really involve me doing anything much for her. A bit of running around taking meals up to her if she’s resting, and trying to support her in anything else she wants to try to do when she’s feeling fatigued. It affects us as a couple in as much as when I feel like doing stuff, going out etc., she doesn’t, and when she’s ready to do something I’ve usually got something else to see too. She’s also got problems with her feet, knees and hips, so even a little walking tends to be a setback for her.
Mum’s fairly okay for most of the time, though she gets really bad back ache from the osteoporosis. She’s very slow in her movements (and sometimes thinking process), so I do spend a bit of time walking around in front of her to make sure that she’s not going to fall. She had a bad fall a few years back (just after I got married) and ended up with a fractured pubic bone. And of course with the osteoporosis she is more likely to fracture something if she falls. But all in all I’m struggling through, and that glass is still half full!
I was diagnosed with a Fast Atrial Fibrillation a couple of years back, which has only flared up twice so far. Also have been taking antidepressants for a while (having had various episodes through my life), and have also got the closest borderline case of Aspergers Syndrome that can be diagnosed. I like to think of me as being on the cusp of Aspergers/regular everyday twit.
I suppose my experience of caring is one of waiting around a lot, being on call, doing most of the everyday stuff that needs doing, and being aware of situations and circumstances that could cause problems somewhere down the line. I’ve had several people say that with the patience I have with my patients I’d make a good carer. I either say to them ‘what do you think I’m doing now’, or ‘I couldn’t do it for anyone else – I wouldn’t want to make a career out of it.’ But I try to do my caring without complaint, with a good nature, and always with good humour and a smile. Isn’t that the best way?
Oh, and I do manage to get out with my wife every now and then, and feel lucky that I’ve had 2 nice holidays (in Italy) over the last 2 years. That was only possible because one of my Aunts came in to look after Mum. My brothers not intereseted in helping out at all really, and cousins who live close by are also likewise unwilling to help out with even some basic Mum-sitting. But there you go, that’s life.
I think I was destined to be a carer, being born to an older mum whose health never seemed its best from the time I could remember. I helped a lot from an early age through a hard childhood which I suppose is nothing to do with the story of caring.
After leaving school I started a pre-nursing course but part way through, attended a hospital appointment with mum. They sent her for an mri scan and admitted her there and then. It was cancer. At 16, I had to stop what I was doing and became her carer. It was a long year of treatment after her operation, a difficult one, with me being the youngest of 6 and my brother expecting me to do for him too.
I had to leave just before my 18th for reasons that don’t belong here, but I saw her through her main treatment and still helped her through appointments and the extras she needed, which continued throughout her life.
I married in 1989 and had my first son in 1990. We nearly lost him at birth but thank god an operation saved him and he’s now a strapping lad of 18 and in the army.
1991 saw the birth of our daughter. At first all seemed well, apart from a few problems with feeding. We thought all was well, but it proved not to be as well as hoped. It took a long time for her to manage mashed food rather then pureed. Then there were the balance and coordination problems. At 9 months, unless she was put into a sitting position, she couldn’t get up and sit on her own, so we were referred to a pediatrician. We finally saw him when Sarah was a year old and he examined her but couldn’t decide, so just kept an eye on her. She couldn’t crawl but bottom shuffled. Finally at 22 months she learnt to walk. What a relief.
I had another son when she was 16months so it was a particularly difficult time. He couldn’t feed as a baby should, and we soon learnt to feed him from a spoon but for now I will continue telling you of the difficulties with my daughter.
At 16 the only diagnosis we have is she has specific learning difficulties with dyspraxic tendencies which would explain why she was so ‘clumsy’. We paid many visits to A&E due to her falling a lot. Her gross motor skills were poor; she couldn’t ride a bike like others or catch a ball etc. I suppose for a long time I have never seen what I do for her or my youngest as anything, other than being a mum.
Our youngest is on the autistic spectrum, non-diagnosed and we are about to have another battle before he finishes school to try, yet again, to get a diagnosis.
From birth I knew something wasn’t right. I don’t know if it’s instinctive, but I always knew. As a baby, outings were hard from the off. He hated crowds and would become distressed. Life became a rigid pattern to help keep things calm and settled. At 3 he still had no speech and we had to battle for a special needs education.
So life became a round of care. Mum was still in need and by time my youngest was born my mum-in-law suffered a stroke and as we share a home I became her carer too.
At the worst point in my life this was my daily routine:
I’d awake to Daniel at 5.30-6 every morning, breakfast for the kids then drop my two and my two nieces at nursery. Then back home to shower mum-in-law. From there to mums, who by then was in hospital, so clean and pack a few bits at bungalow. Then around to sister-in-law’s as she had a brain hemorrhage, then to hospital for mum. Back home for the kids and then the usual household things tea for 7 extra and try to keep routine for kids especially my youngest. Tea then homework, bath, story and half an hour to an hour trying to keep him in bed to settle.
In amongst all that was speech therapy, occupational therapy and school meetings for the children, social worker for mum and the usual run in with family over mum and mum-in-law’s care.
Mum died 5 years ago and I came close to breaking point which is when I re-evaluated life.
I’ve stepped back from other people’s care apart from my children’s. I help with mum-in-law when I feel I can, as she now has Alzheimer’s, but I’m no longer her main carer. I felt a lot of guilt for not continuing. Caring for one is hard but all of them was far too much. I don’t know how I coped so now I have to prioritize and my children must come before others.
I haven’t walked away unscathed from all this. I suffer depression and have damaged joints from caring. My shoulder went at 16 and to this day I still suffer pain. Lifting mum and mum-in-law took its toll. My knee needs replacing but I’m too young, so for now, it’s been cleaned up a little. I have few friends as only other carers really get what life is like and understand.