If you do nothing else, read this

Many carers believe that no one is out there to help them – they’re wrong. Andrew Chilvers explains.

Hereford pensioner Patrick Rice, 76, is typical of the fiercely independent carers that spend their lives looking after loved ones with little previous experience and with limited support by local agencies.

A decade ago his wife, Jean, was diagnosed with Alzheimer’s and Patrick initially looked after her at home. But after a nasty fall, in which she sustained severe injuries, she was rushed to hospital and later placed in a respite care home. While in the home her condition deteriorated, she slept long hours and rapidly lost weight. After expressing grave concerns, Patrick found that the staff had been treating Jean with a sedative called Temazepam.

“She was in an appalling state and hardly recognised me,” Patrick recalls. “She was also now doubly incontinent and I found urine dripping on the floor under her bed. I even took a film of her. I thought, ‘I can’t allow this to continue,’ and I asked her if she wanted to get out. She nodded.

“So I sold the house and bought a smaller one. I also bought all the equipment for her, a wheelchair, a commode. I was scared, apprehensive. I thought, ‘there’s no one out here who can help me.’ But I was happy I made the decision.”

At home, Jean eats three meals a day, cooked by Patrick. He admits that looking after his wife is challenging and his biggest worry is falling ill with no one else around to help.

“I talk to carers who are all stressed, tired and anxious,” Patrick says. “All of them take time off work and are on medication themselves. You have to help the carer to help themselves. I see so much agony. Carers lose their friends and family, have no one to talk to and tend to get very depressed. You have to remember that we’re still humans.

“But it’s been worth it. My wife senses that I love her and enjoy her company. She knows it and responds to it. At home she knows that someone cares. They get the vibe. I live the best I can for today and forget about tomorrow. Tomorrow may as well be 100 years in the future. Today counts.”

Patrick’s story is typical of the elderly carer who manages to make ends meet with little outside help and in relative isolation. 

But if there are any doubts that a carer’s lot is a difficult one, a recent study by Carer’s UK makes for grim reading. For example, more than 600,000 carers suffer mental and physical ill health as a direct result of the stress involved with caring. Also, one in three carers struggles to pay basic food and utility bills, which often contributes to their own ill health. Meanwhile, each year benefits worth an astounding £740 million go unclaimed by carers.

Free advice 

Nevertheless, organisations do exist that provide free advice and pensioners like Patrick should not be losing out on any benefits that are rightfully theirs. Carers UK recently published a guide to carers’ rights and benefits called ‘Looking After Someone’, which should be essential reading for all carers.

Despite the stark statistics, the booklet also highlights the benefits available for carers. These include:

• Disability grants are given to help adapt homes to make them suitable for a disabled person.
• Community care assessments are available for the cared-for person as well as for the carer and can cover care needs and mobility (transport) requirements.
• Social services can provide even basic practical help such as cleaning, gardening and laundry services, among other things.
• Working carers have legal rights regarding flexible working arrangements.
• Pension credit is the payment system that ensures older people on a low income have enough to live on. People receiving pension credit may be eligible for assistance with their mortgage.
• People who live alone or have a property adapted for care purposes may be entitled to a reduction in council tax payments.
• Winter fuel payments for people over 80 now total £300.
• People on a range of benefits are entitled to reimbursement of fares to hospital for treatment, including when they are travelling to support someone else.
• In England, carers who provide substantial care must be offered an assessment of their needs by their local authority. If eligible, help can include a mobile phone to help the carer keep in touch.

The guide makes it clear that most benefits and practical assistance can only be provided after some form of assessment. It also recognises that the application processes and payment rules for some benefits can be complex.

Nevertheless, Carers UK’s guide is a must-have booklet for anyone needing to understand the world of caring, particularly if it’s their first time. In modern Britain, carers such as Patrick should never feel that they’ve been marginalised and left to fend for themselves.

The booklet is available at: http://www.carersuk.org/Information/Orderpublications where you will also find a range of shorter fact sheets on individual issues.

Obituary 

Sadly, on December 12 Patrick's wife Jean passed away in her sleep after many years suffering with Alzheimer's.

Patrick said: "My wife was into her 13th year of Alzheimer's when she passed away. The caring system fails Alzheimer's patients through lack of understanding."

To read his full letter, click here.

If you would like to comment on this article, email Andrew Chilvers at editor@bettercaring.com.