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Your Story |
Cathy
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# Posted: 3 Feb 2008 20:22
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I am a divorcee approaching retirement age and I care full-time for my elderly mother who is virtually chair-bound with osteoporosis and other age-related problems.
Ten years ago I had a lucrative full-time job, a church ministry and a good social life. I also owned my own house. This was more than a home, it was an investment which represented my pension. And I was caring for Mum who lived a few miles away.
In spite of the government's drive towards flexible working arrangements for carers, flex-time was never an option in my post and would not have helped me anyway. My problem was the unrelenting worry about Mum being left alone for long periods. She could do little for herself. She could not dress herself or cook a meal, and she was in constant pain and prone to falling.
Social Services would not have funded the level of supervision she needed and would not have monitored her TENS machine or dressed her blistered legs. Since Mum claims Pension Credit, the cost of private care was prohibitive Either way, Mum was adamant she did not want to be looked after by an army of carers, home-helps and district nurses.
Eventually I suffered a breakdown through trying to cope with a stressful situation at work whilst also trying to look after Mum. After two years off sick, I had little option but to leave my job. I was forced to sell my home because I could not afford to pay the mortgage and I moved in with Mum to become her full-time carer and nurse. Much of my proceeds of sale was spent on renovating her bungalow and building an extension to suit her needs.
In an attempt to earn a living, I took a part-time job in an estate agent's office working weekends when I knew my married daughter would be available to help Mum in an emergency. I earned exactly £70 per week. This was too much then to able to claim Carers Allowance but not enough to live on, so I had no choice but to supplement my income from the residue of my proceeds of sale.
After two years in this job I had to resign because Mum's health had deteriorated to the point where I could not guarantee opening the office on time - if at all.
Thereafter my only income was around £47 per week Carers Allowance. Because I had sold my home, I could not claim Income Support and, again, I had no option but to live off my savings.
Now my proceeds of sale - my pension - have been whittled away to almost nothing and I am entitled to grovel for Income Support. Jobcentre Plus recognises me as a full-time carer and, as such, I am not called for work-based interviews.
My income as a carer has recently increased from £48.65 Carers Allowance to £86.30 per week Income Support, including Carers Allowance.
The final indignity was being suspected of Benefit Fraud and interviewed under caution because the Department for Work and Pensions could not understand where my savings had gone!!!
For the record:
1. I believe strongly that all able-bodied adults in Britain should work to earn their own living and provide for their retirement. I have followed this philosophy throughout my working life, even when I was a lone parent bringing up young children.
It distresses me to say I am now reliant upon Income Support and will be reliant upon Pension Credit and other Benefits throughout my retirement. I now have no savings, no job, no pension and no secure home of my own. I struggle to pay my share of the bills, to keep my car on the road (a necessity here) and to pay vet's bills for my dog, etc.. The last holiday I took was in 1995 and it is doubtful whether I will ever be able to afford another.
This is not how I planned my life. It worked out this way because I chose to care for Mum rather than leave her at risk and, as a daughter rather than an agency carer, I have been expected to fund my own caring role for the past ten years.
2. Carers Allowance (currently £48.65 per week) is an income replacement benefit paid to someone who cares for a minimum of 35 hours a week. This works out at £1.39 per hour. (The minimum wage for an adult is £5.52 per hour.) In reality, the hours I spend physically caring for Mum are much more than the legal working limit of 48 hours per week, and I am on call twenty-four hours a day, seven days a week.
3. If I didn't care for Mum, she would be entitled to claim Direct Payments. These would be paid by the local authority to enable her to buy in a minimum package of care from an agency. The average Direct Payment awarded in 2006 was £10.40 per hour. So if I walked out on Mum today, it would cost the taxpayer around £364 per week (less Attendance Allowance of £43.15) to provide 5 hours care each day. This does not include nursing costs, social workers' salaries, administration costs, etc.. In other words, I reckon I have saved the tax-payer a minimum of £160,000 in personal care costs over ten years - excluding the cost of social workers, office administration and district nurses!!! This is £50,000 more than I sold my house for!
4. Direct Payments cannot normally be used by disabled people to employ a carer who is a close relation and who lives at the same address. (MPs may employ their partners and children, but disabled people can't!!!)
In theory, subject to assessment, I could be paid around £22,000 per year from public funds if I moved next door to be employed as a live-in carer for my disabled neighbour, and his daughter could be paid £22,000 per year from public funds if she moved in with Mum as her live-in carer. But, because I am Mum's daughter and I live in her house, I am expected to live on £2,530 per year Carers Allowance!
5. Because Mum and Dad denied themselves luxuries all their married lives in order to purchase their own home, Mum's bungalow could be forcibly sold to pay her care fees should it be necessary for her to go into a nursing home. In this event, either I will be made homeless immediately, or a charge will be put against the property to force its sale upon Mum's death. (I have already lost one home through caring!!!)
6. Since I began caring for Mum I have suffered from stress-related illness. I have now been offered a hospital appointment to investigate the cause. (I can tell them before they ask - it's all caused by financial worries!!!) I don't know how much this illness has cost the NHS in terms of consultation and treatment over the past ten years, or how much it will cost the taxpayer in the future, but I believe it could all have been avoided. I can cope with caring for Mum, but I could not cope with the financial implications.
7. In a few months time I will officially become a 'pensioner' - and I can't wait! My life as a carer won't change one jot, but my income will increase overnight from £86.30 to around £146 per week!!! (including Pension Credit and Carers Premium.) Then, like every other pensioner, I will be entitled to free healthcare, free prescriptions, a heating allowance, free bus travel, cheap rail travel, and a host of other concessions denied to most carers of working age.
8. Would I do it all again? Yes, of course I would! Short of abandoning Mum to a residential home - her greatest fear - I had no real option. I am only grateful I was there when Mum became unconscious because of a hidden infection, when she fell out of bed scraping nine inches of skin off her arm, and when she had her stroke. If I had not given up work to care for her, I suspect she would have died on the floor alone.
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Kerry
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# Posted: 7 Feb 2008 09:43
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Not only is carers allowance minimal and the only one to be worked for, one can only receive it for one person:
We have not one but two very severely disabled children. Before my husband was also forced through our cuircumstances, to give up his job, I only received it for the eldest child (now he claims it for the youngest)
This is the same all over: many people care for more than one person on DLA (perhaps an elderly relative and a child) but only receive it for one.
I would like to know why.
Thank you
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Paul
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# Posted: 8 Feb 2008 05:18
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Regular readers of the various Carer forums will know of the concept of the Social Wage , which , in a nutshell , removes all carers \ the elderly \ the disabled from the current ( non ) benefits system.
A New Age beckons , with the SW paramount to eliminate decades of stigma , and to welcome in a new social understanding for all of those unable to work in the strictest of senses.
Fuller details of the SW may be found elsewhere on this Site.
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Clive
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# Posted: 10 Feb 2008 12:11
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It's the same boring words that have been going around for a while. What a shame you can't face up to the reality of the matter. This place is the same as carersunited/Tony (I'm desperate) Rhodes and the Chill.
We are getting thousands of hits per week and this sort of "reasonable" place has tried and failed.
I know that the moderation here is as lousy as Carers UK but even the people running this place HAVE TO SEE it's doomed to fail
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Rosemary
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# Posted: 10 Feb 2008 13:12
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Why dont you write your testimony Clive of how the system has failed you and Christine.This is not a carers forum in the way that the others are,it is not in competition with any others,it is not here to say who is right or wrong, more to run alongside all forums and record instances of how this government and previous ones, along with Local Authorities have let those most vulnerable down,yourself included.
This section is for testimonies,why dont you share yours?Just pick the heading that suits your own circumstances best.
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Anubis
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# Posted: 15 Feb 2008 00:38
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Cathy
According to some opinions expressed elsewhere Cathy, you chose to be a Carer, not that I agree with that analysis but it goes to show you the way the charities think. It also agrees with the charities drive to get Carers "back into work" as if they don't do enough already.
I wish more people would realise, as Clive above obviously has, that the main charities, CUK and PRTC, are little more than a front for government controlled committees and think tanks who have commandeered them for their own uses.
Roll on the day Carers rise up and take back what is theirs
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Pam
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# Posted: 15 Feb 2008 13:09
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On the negative note mentioned above that that this forum is "doomed to fail"
Here is a quote I once read, which I think is true: "If you try you may fail, but if you don't try you are guaranteed to fail".
I do not agree that anyone chooses to be a carer, family members care for their relatives in the main because they care about them. It's the emotional attachment that is exploited, authorities and government know that no matter whether you received financial backup or not the majority of family members could not stand by and watch someone they care about struggle or suffer alone.
If I had a choice, I would prefer my son did not have the illness he has. The choice to care or support him is not negotiable as far as I am concerned. This is where carers are held to ransom, I wouldn't trust the local authorities to care for him full stop.
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Rosemary
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# Posted: 15 Feb 2008 17:08
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Would you be willing to share your testimony Pam,only those parts you feel comfortable with??
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rosieh
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# Posted: 16 Feb 2008 12:54
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I agree with Pam the emotional attachments are exploited. I have cared for my multi-disabled husband for 20 years and during that time also cared for my mother who died aged 98. She tried to make me promise never to put her in a home but I was torn between my husband's needs and hers constantly. As it happened she didn't go into a home but died in hospital from a chest infection. She had paid carers but I was constantly going to her sheltered accomodation to check that various things were carried out. When I said I couldn't wait for doctors visits/ chiropodists etc I was made to feel I was neglectful, no one asked if I needed help until I eventually didn't go there when she had yet another fall and was taken to A& E.
During this time I have been diagnosed with 3 stress related illnesses.
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jane
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# Posted: 16 Feb 2008 13:58
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like rosieh, I was a Carer for my elderly father when he was at home, as well as being a Carer for my husband and son. A couple of years ago, I had a phone call from a neighbour of my Dads-two days after Christmas. He had stayed with us, and I had taken him hom ethe previous day. He decided to go for a walk, and fell, breaking his nose and with both eyes shut with bruising. His neighbour went in the ambulance. I rushed over, and the hospital had discharged him. I said I was a carer and unable to look after him, also he was not fit enough to go home. They insisted they would not keep him there. I said he would have to climb stairs to get to bed, which he was obviously not capable of doing. Eventually, I said that I was not prepared to take him home, and it was their responsibility, and if he fell down the stairs before he was better, I would sue them. They kept him in for three weeks!Unfortunately, when he was discharged I was still expected to care for him, which I could not do. I lived 10 miles away, not far, but too far to be calling in several times a day.My Dads rights overshadowed mine,apparently.My sister and brother did not take on any responsibility. Predictably a couple of months of very stressful life later, my Dad had another fall. This time he went into a residential home fora fortnight after discharge from hospital, and he liked it so much, he sold his house, and is still there. He is fortunate that he does not have to worry about his savings dwindling, as he is in a better financial position than many pensioners.
I have been constantly torn since my mother died.Even in the home, my dad asks me to do things for some of the others there!I don't any more, but it is very difficult to distance myself.I am thankful that the home is very aware of my family needs,and do not ask me to take my Dad to appointments, which they usually do if families live locally.
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