Carers Tell It Like It Is

Many people have no idea what a carer  actually has to do, and the pressures they face. Each of us has to contend with different problems. Please use the form below to give details of your caring role and the particular difficulties you face:

Having been married for over 30 years I spent many, many years taking care of my husband’s physical and mental well being after some pretty traumatic injuries (physical & mental/PTSD) in the armed forces. I always took it as part of my “wifely” duties to attend to his every need – but over the years both his PTSD and his physical problems have increased ten-fold, putting much more pressure on me to help him get through his day.

I have to do most things for him, including help him wash, shave etc and it was only in the last couple of years that I suddenly realised that somewhere along the way, I had gone from being a doting wife, to his full-time carer. I don’t remember when it happened but it did and now I spend my days doing almost everything for him. I get no help from social services as we were told we are not old enough to qualify. Since when did being disabled and needing help have an age limit on it?!! I suffer with MS and at times am forced to get around in my wheelchair, yet I still do not qualify for help with my husband’s 24/7 care.

I gave up my career to take care of my husband without a second thought, but now I need help with both his and my increased needs we get nothing! I was told by DWP not to bother claiming Carers Allowance because they would just take it back pound for pound from our other benefits, so I am not now officially classed as a “carer”, despite the fact that I AM ONE and feel I deserve to be given the recognition of such. I work 24/7 most days and often find myself exhausted, which has a knock-on effect on my own health. At no time have we EVER bee given any advice unless we sought it out for ourselves – and even then most of it came from charitable organisations, not the DWP, Social Services or anyone like that. They have failed many people and we are no exception. What a sad state of affairs this country would be in, if all those who care for loved ones were to go on strike or refuse to care anymore and demand healthcare organisations take care of our loved ones. The country would grind to a halt pretty quickly! Shame on not only this government, but the last too. None of them have made any effort to recognise the ESSENTIAL work we do in caring for those who are in desperate need both physically and mentally! Tiggy

For me, caring often feels like deciding which failures you’re going to try and address at any given time. This isn’t a particularly positive approach, and it certainly doesn’t help in the carer role of ‘Morale Officer’ we’re often required to perform.
Morale Officer is in itself just one of the things we’re trying not to fail at. Lots of people have busy jobs and nobody can be expected to stay happy all of the time, but for carers there’s an added need to hide our negative thoughts and feelings from those we care for. So, while we’re busy prioritising which of our tasks as Nurse, Chef, Beautician, Care Manager, Hairdresser, Physiotherapist, Pharmacist, Accounts manager, Welfare officer, or DWP Liaison to fail at the least, there’s an onus on us to smile, or at least not to share our distress at the things we haven’t got the time or energy to attend to.
So, forms get filled in late if there’s been an overnight care need that’s wiped out any meaningful brain-power the next morning. Things get forgotten, kitchens go untidied, towels pile up and friends, family and neighbours go ignored – not just during the busiest times, also when we’re scrabbling around to find time – sometimes just hours or minutes to catch a breath. Managing failure means that some days, the best we can hope for is just to get by, and the rest of the time we’re spinning the proverbial plates. Outside forces weigh us down with blindfolds, or tying our limbs together, or just knocking them off their poles while we’re busy down at the other end of the stage trying to defy gravity.
Still, it must be nice to have a job where you can sit at home all day. Rob

I’ve just finished VI form – only just realised I’m a carer.  I looked after my sister since I was about 10. She’ll never be better, but she was really really ill for about five years  Most of the time there was just me and my mum to do the caring. I needed to help with all the lifting and stuff, and staying with her, and I had to put her in the recovery position and stuff like that. Some nights my mum woke me and say my sister had to go to hospital and I’d be alone in the house and have to get myself up. When I was doing my GCSEs I stayed with people because they’d  taken her to a hospital 100 miles off and mum had to go too.  Lots of times I’d take her to dads which is a 3 hour journey by rail from when I was about 12.  Its not great to be responsible for someone that ill when you’re young, but I got used to it. It’s had a massive impact on my life. I know my mum loves me, but my sister has to come first. I was on a school trip last year, and it was the first time I’d been on holiday and not responsible for  her. There was this  noise in the night, and I was halfway down the corridor, heart beating, before I remembered she was a thousand miles away and I didn’t need to worry. Help from young carers groups? No, no help from anyone. What would they do anyway? sit around in a group and ask me if I grieved and that kind of shit? Tom

 I’m separated with no family and I have two teenagers with special needs and an older girl.   My daughter has severe cerebral palsy and cannot walk or talk.  She can do almost nothing for herself, but has a lovely happy personality.  My son has high functioning autism and severe anxiety.  He has major behavioural problems and is quite volatile.

Being a carer has some rewards, but not many!  Especially when you realise that this is your lot for the rest of your life, unless you walk away and I don’t see myself doing that.  Caring has affected my physical health, my back is destroyed as I started hoisting my daughter very late and I am now overweight and unfit as I am stuck at home; my mental health as my son’t behaviour has been very difficult to cope with.  My dreams for my life are all gone, as is my career, though I do some part time work.  My friends are sympathetic about my daughter, but think my son just needs more discipline, many of the staff at his school think the same.  We cannot go away anywhere now, and my son often won’t leave the house.  I have had counselling and I am beginning to accept my situation, I just try and get through each day. Cathy

Mostly, I am exhausted. Not simply from 8 years of not sleeping, nor the prospect that this isn’t going to change any time soon. I am also exhausted by (in no particular order); the ‘challenging behaviour’ of a child with complex neurological difficulties and the many needs that come with such conditions; the constant battle to get those needs met – medically, educationally, socially; the disapproval and lack of understanding that we face every day because she looks ‘normal’ and by my own bloody minded determination to inform the misinformed; trying to show that my love can be distributed equally to my other child even if my time cannot be, trying to earn some extra money and keep my sanity from slipping and most of all, by the constant , gnawing worry for the future. Emma

I am 34 and care for my partner who has a tumour on his spine, after 4 years of this my son was diagnosed with epilepsy and now possibly autism. My life is endless task of trying to care for 2 people with differing needs while trying to run a home, fight the authorities for every meagre penny we get. Be penalised for an unfair bedroom tax that has left us out of pocket for the necessity of an adapted property. Recently I now have to care for my elderly in laws as well with hardly any support. I feel like I’m stuck in groundhog day, constantly beaten by the day to day drudgery of caring, by the ignorance of the attitudes of others. My own health is suffering, but who cares??? Who is willing to look after me??? Kirsty

 What do I do and how does it impact on me? The answer is simple, I do everything . I care for an 82 year old man who has vascular dementia. I’ve done this for the past twelve years. His family don’t want to know. He is immobile, incontinent and violent.
I’m 65 and in poor health. Joint disease,vascular disease, PMR, and kidney failure. I have also  had one complete mental breakdown 3 years ago resulting in 5 months hospitalisation. I now have a carer who comes in 5 days a week (when not off sick) she is very young and totally inexperienced but it seems impossible to get carers. We get a budget and I’m at last getting the bathroom done. In the past year we’ve had lots of visits from lots of different people but I do believe, from my experience, that it’s a ‘tick box’ exercise. We’ve had to fight, fight, fight for everything and without the help and support of my son I would have lit the portable barbies. I now get visits from an Admiral nurse and I was gobsmacked when she said she was here for ME. I want to continue to care as promised. I would just like the support I need, rather than what I’m told. Life sucks, I don’t really have one Marion

I’m a mother to 3 kids, 2 of which have special needs. Angel, 15 is epileptic, she has complex learning difficulties, apd, duplex kidney, erythema nodosum which she requires a wheelchair for and abnormal chromosomes. She has a lot of seizures through the night and is scared. I lie with her until she is settled and calm and back asleep, this could take minutes to hours. Jackson, 5 is autistic and is being investigated for epilepsy also. He depends on me for everything to get him through the day, he doesn’t sleep much. My husband has to work 50 hours a week so we can pay the rent and bills, my other son, 13 feels pushed out and is angry, I’m tired, physically and mentally, Im on anti-depressants and feel like I’m just surviving. I do the same thing 24 hours a day, we have loads of medical appointments to attend, lots of therapy sessions to get through and we will continue to do this for as long as is needed. Chelle

My son is 27, suffered a huge brain bleed after a forceps delivery, resuscitated twice at 4 days old. He has hydrocephalus, cerebral palsy, epilepsy etc. He has never walked and spends his days in his power chair which incidently cost us £8000. He has endured 14 brain surgeries and numerous orthopaedic ops. I have been his sole carer all his life. I tried to work but had to give up owing to my son’s unpredictable illnesses and hospital stays. Nobody wants to employ somebody who can’t be relied upon to even turn up or have to leave at a moments notice. I suffer with stress related IBS and also have back problems due to 27 years of lifting and manhandling my son. I cannot remember the last time I had an evening out or even a day out. We employ a PA for 7 hours on a Saturday who receives £60 to take my son for lunch and cinema or bowling etc. The PA uses my vehicle, my diesel, his lunch is paid for as is his cinema or bowling ticket. He does no personal care. I however care for my son 24/7 for £59 a WEEK. When my son was a child we had respite 2 nights a month which was such a welcome break for us all but the day he reached 16 it stopped and for the last 11 years we have had no respite at all. I am not asking for sympathy, I am asking for recognition that I do a fantastic job at caring 24/7 and am saving the government huge amounts of money by doing so. LouR

Can only speak for my mother 85 this year, who has spent the last 55years caring for my little sister who had brain damage at 6months old, rubella. My mother receives no help its been a constant life of form-filling, and bureaucracy bullshit. Ok, she has us – we all do what we can. As for me I volunteer for Mencap a couple of evenings a week, this is to give carers a well-earned break, in this break most have to dash off, shopping, prescriptions etc. It’s hardly a break , but for some this is all the break they get. Carers are not saints, just because you are related your expected to be on hand 24 /7. This can’t be right. You would have thought, as I did, that Cameron would be the first to change things given the sad loss of his son, sadly my vote was wasted. Jon Binder

I am a mum of 3, our middle child, the Bold Joff who is 19 has a rare life-threatening, life-limiting genetic condition called Lowe Syndrome. He has multiple and profound learning, physical and sensory disabilities and complex health care needs, including epilepsy and renal tubular acidosis. He cannot read, write, count or speak.  He requires constant adult supervision for all aspects of his life, dressing/undressing, getting around, washing, eating, medications, and is doubly incontinent in pads full-time, so good personal care is an important part of his life.
The last 20 years have been utterly dominated by unpaid caring. Which I do willingly for the love of Joff. But I have had to give up a lot – my career as a pathology technician, about £1/4 M in lost earnings, the company of colleagues, status in society, right to days off, an occupational pension, self confidence, portions of my mental health.
I think unpaid carers are the biggest self skilled, resourceful, canny group of our country. I also think we are completely shat on.
There is NO political will to improve our lot. (eg. Increase our poxy Carer’s Allowance to the same rate as JSA – a simple acknowledgement that we’re worth the metal). All we’re worth is the same old, tired pish about being “unsung heroes”.
I hope someone, somewhere finds a new song about us, where we’re finally valued and supported in a hard and essential job of work. Fiona

I gave up my promising and lucrative career as an engineering project manager when my husband became ill back in 2007. He contacted a staph infection which infected the bones in his neck crushing his spinal cord. Over 4 days he went from being my tower of strength to needing help with everything now being partially tetraplegic. (paralysis in all four limbs) . So we have gone from the world being at our feet , travelling to exciting places in the world, eating at fine restaurants, having no money worries – to living in two rooms and watching every penny.
We are supposed to have NHS-provided continuing care as Terence can not be left on his own just in case he starts to spasm badly or falls from his chair or  start to have a potentially fatal autonomic dysreflexia attack. The NHS have been cruel – bordering on negligent – in their provision of coverage, leaving me coping with very physically demanding work on call 24/7.
A typical day for me includes 6 hourly urine catheterisation (06am, noon, 6pm midnight) come rain or shine. Regular manual evacuation of my hubbys bowels, which literally means sticking my hand up his arse to retrieve the stuff. Manually lifting him from bed to wheelchair and visa versa on a regular basis as our housing is too small to safely use a hoist solo. Washing him, dressing him, feeding him, doing physiotherapy, checking his skin on a regular basis for possible pressure sores. Watching for signs of UTIs, low blood pressure drops, chest infections and the deadly autonomic dysreflexia.
The hardest thing is going without sleep, If i get 3 hours at a time I am lucky. He does not sleep just catnaps and often when lying down his bladder will play up so he will need attending to.vIt is a constant pressure , always there. You as the carer have all of your own personal choices taken away, even when you can sleep. Onmybiketoo

My life as a carer…do I have a life of my own? Everything I am invited to I have to think if I can go or will it clash with my carers role? I am an unpaid carer to my husband and 2 adult sons on the autistic spectrum. I could claim carers allowance but then my sons money would diminish and like most parents I would rather suffer than my children. My eldest son lives alone very unhappily but we cannot find anywhere suitable for him so I go over every weekend Saturdays and Sundays to try and lessen his anxiety. Of course this means suspending the things I would like to do but carers just do it without thinking. Its very hard living with the depression my sons have but I listen to all the well meaning folk that say try not to let it affect me, too late it has. Xmas was a period we tried to rush through, get it over with and breathe a sigh of relief we made it to January without any major hiccups. Its the change you see, change in atmosphere and routines that other people thrive on that deeply upset my 2 sons and so xmas and new year are to be dreaded. Respite? I never had respite when they were children and even though I could nip away for a day or 2 Mr David Cameron won’t fund it and likes the rest of the world to think of me as a scrounger as I don’t work. At one point my younger son was ringing me up to 40 times a day when his anxiety went through the roof. I don’t think any employer would accept that, besides my son is usually up all night and so I don’t sleep much. What keeps me going is love for my children and the knowledge that no one else will step up to the job. Janb

I care for my 4y6m old daughter who has evolving cerebral palsy with associated global developmental delays and visual impairment.  Carer’s Allowance is a very poor contribution to our household, my husband works very hard in a job he hates because the money is better than minimum wage but he is in pain every day with RSI injury caused by his work. My own anxiety levels vary depending on how pressured I feel. We fundraise to afford therapy for our daughter and my husband uses all his holiday allowance on taking time off so we can take her for therapy or hospital appointments. I often feel like the pressure is all on me but it’s on him too.
We deal with our daughter’s difficulties well, our home is full of laughter and positivity and I don’t fear for the future, it would just be nice if the Government offered up something a bit more generous than £60-odd a week so we could afford to have my husband work a little less. Sari

 My son Harvey was diagnosed with Tuberous sclerosis complex and epilepsy when he was 3 weeks old. He went on to be diagnosed with Lennox gastaut syndrome, chronic lung disease, dystonia and so many other illnesses it would take me a lifetime to list. As his illnesses grew and his condition worsened, I felt that my role as his carer completely overtook my role as his mother. The physical side of caring wasn’t the problem, I would have done,anything for him, but the emotional and mental side was exhausting. From arguing with doctors about his care, to spending a year fighting for a hoist to move him around and a wheelchair to go out with. Endless forms to fill in and battles to fight in the short spaces of time that were my own. Losing friends and thinking of medical staff as family, it was isolating. Finding the right balance between mother, carer, nurse and advocate against simply,’mum’ to my other son, emotionally it tested me. And when his body gave up and he passed away aged 4, losing the role that had been my identity was a loss also. Yet with no support on how to,adapt to life without your child, and the feelings of not being needed anymore. No one tells you that it hurts when you aren’t a carer anymore. The small community you fell into is no longer where you belong. You are grief stricken as well as lost. Hanna Hughes

My name is Gill, my daughter Zoe was diagnosed with epilepsy at the age of 11 months, sometime later with learning difficulties and at the age of 13 with autism, we’ve had ups and down throughout her life. I’m her closest friend as she can’t go out with her friends from school in case she has a seizure, I can’t expect them to deal with that, she is nearly 16 and can’t really even cross a road properly, it’s heartbreaking that she will never live an independent life, I just want an easy life for her. Gilly

I  am a mother-carer for my child. What’s worst?  not the anxiety, or the fear, or the many times I really thought she had died, or the exhaustion, or the endless form-filling, or the hours waiting on the phone to government departments, or the advocacy, or the trying to find carers to cover. Not the loss of any social life, or the hours, days, weeks of hospital visiting, or tracking  prescriptions and the effects of drugs, or the fighting for what she wants but can’t articulate, or the difficulty of trying to do paid work around her condition, or watching her get more and more physically damaged year by year. It is doing all this with no end in sight and feeling I’m always failing my other children while not managing to improve her life. Basically I feel a failure Anne-M

I, mother to Ben; (age 21, diagnosed with Lennox Gastaut Syndrome: difficult to control epilepsy, frequent daily/nightly seizures, learning difficulties, autism, unknown cause, life long condition from birth, know to be at increased risk of early death) am currently sitting on a cot mattress (where I shall sleep {at least rest} tonight – most nights) at the foot of Ben’s Winnie The Pooh covered bed, fuelled with coffee to ensure I do not allow myself to sleep as I may need to stay awake to administer medication rectally to a young man whose peers may have (for instance) watched the streaker who invaded the pitch on the big screen at the local RFC. Held a urine bottle for him while he pee’d next to his bed as I am not strong enough to catch him should he seize on the way to the bathroom and back.
I will do the same tomorrow at this time and the next day and the next until one of us is no longer here. Sal-Minella

I  have 3 adult sons and 3 grandchildren. My son is 32 and  because of his disability he does not tolerate noise and is very possessive of me. His dad died 14 months ago – my respite was when he went to his dads for weekends. His dad was ill and moved in with him while on treatment which I did all the caring for and transporting to appointments. I have asked for some respite care, as its over 2 years since I had a day off, and was told there was no money for it. The only other option is  24-hour care home. Again this is preying on love, as it would destroy both of us – me because he is my son and my life –  and him as he has just lost his dad. Where is the help !    Sandra Grears

I have 3 boys age 20, 18 & 9. The oldest has Chronic Fatigue Syndrome & missed over 5 years of school. It would take me over an hour to get him up in the morning for him to come down stairs & keel over sideways on the sofa. Anything we did as a family had to fit in with him having a better day, not travelling too far or doing too much, even on family holidays. Some days he could manage to go out but it could leave him in bed for the rest of the week.
My middle son has Neurofibromatosis with associated ASD/ADHD tendencies, dyspraxia, dyslexia, sensory processing disorder & mild learning difficulties. The NF has also caused an optic nerve tumour in one eye. He also has an unrelated brain condition – a Chiari malformation & had brain surgery 7 years ago. He has regular MRI scans as he may well need further surgery at some point. He has sleep-walked for years & I regularly have to be up in the night checking he is ok if he wanders about. The uncertainty of if his conditions will get worse is hard to live with. It’s like living with a time bomb but not knowing when or if it will actually explode! The worst place I’ve ever been was at his bedside in recovery after his surgery, I’ve never felt so scared and being strong for him was so hard.
Both boys became ill around the same time & as I was a single parent then I had to leave work to look after them. I had a well paid job I loved & really struggled financially but I had no choice. When I met my husband he was also a single parent & I’ve now adopted his son who has global developmental delay with a severe speech disorder & mobility/motor skills difficulties.
My husband has epilepsy which is well controlled with medication but he still needs care if he does have a seizure.
Since the boys have been unwell I have developed fibromyalgia which is an extremely painful & tiring condition affecting both mentally & physically, I forget conversations I’ve just had, things I’m supposed to do, etc. I use sticks to walk and cannot even make it round the supermarket anymore. I believe it has been caused partly the stress of my situation. I have also suffered with depression over the years. I care because I care, but sadly very few seem to care about the effects of caring on carers. Jayne

 I am a “lucky one” as my husband is not physically disabled but suffers from PTSD. I have always maintained I have not been his carer for all the years we have been married, but had that drummed out of me a few weeks ago by other wives in my position. We have to remind them to do things like eat and take a bath or shave, be there to find stuff for them, give them emotional support when they are not “themselves”. We have to learn to cope with dissociative episodes when they do not know where or who they are and run the risk of injuring themselves, we also have to cope with flashbacks and nightmares that takes them back to moments of horror……all these things can come on in the blink of an eye………..a sound or a word that triggers them”. We have to cope with anger and aggression because we KNOW that its not them but the PTSD when they are bad. As many of our blokes have been out “serving their country” at some time or another you would think being a Veteran would count but no not here, we have to fight just to keep a roof over our heads and as for help…….we are still waiting after 9 months to find out if they will give him a war pension! I too am ill with some auto immune thing they haven’t quiet diagnosed just what it is yet…….been told it could be lupus. What help is available has to usually be found out by trial and error, some of the help you can get almost seems like its part of the official secrets act when trying to ring info out of GP’s etc!  BigBird

Bullied,  discriminated, harassed, series of mental health PTSD breakdowns,  two  when in work;  still on two types  of anti-depressants  after my sacking; now have  criminal records  after another two breakdowns; never before had been  in trouble with the law – all because a medical specialist sold my medical records to D-B-S-railways, who gave them to five managers that I know of & two ASLEF reps. ASLEF then  dumped  us .  We lost our home. According to MIND legal if a medical practitioner  gives away any medical information  of a person  its  harassment no  record for the specialist.   First judge stated that specialist was an old friend of his. Three nights in cells , nine months suspended for two years.Yes my life as an unpaid carer for thirty three  years.   Shite.  Colin Utting

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