"It never occurred to me that I was a carer. It was just a natural progression: husband, wife, relationship -- if someone needs help, you help them."— Joe De Souza discusses caring for his wife Melita
Coping with cancer is a difficult and frightening experience -- not just for the patient but for the families and friends living with the patient. Although professional carers such as nurses play a vital role in looking after people with cancer, much of the everyday work is done by other carers -- by family members, partners, friends or neighbours. These people, of whom there are over one million in the UK, often don't define themselves as carers but still bear all the burdens of the role. If you're one of them, you'll be aware of the challenges you face, but may not know about some of the help that's available for people living with cancer.
The challenges of being a carer
Caring for someone with cancer can be life-changing. It can mean taking on new responsibilities and tasks, dealing with unfamiliar feelings and even shouldering new financial obligations. Carers are motivated by love, friendship, loyalty and the desire to do the right thing -- but that doesn't mean that they don't need some support with these challenging tasks.
Some of a carer's tasks are simple and physical. For example, as a new carer you may find yourself dealing with a friend or loved one who is no longer as mobile as they once were. They may need help with tasks like getting in or out of the bath or getting up from a chair. They may need you to do things for them they can no longer do for themselves, from doing the dishes to going to the shops.
Each of these tasks may seem simple by themselves, but physical fatigue can build up little by little, causing carers to feel worn out without being able to point to a single clear reason.
Similarly, the emotional strain of caring for a loved one with cancer can tell on carers. A carer's responsibilities often include helping the patient deal with their feelings and fears, providing emotional support and a shoulder to cry on. While this is valuable, it can leave carers feeling like they don't have an emotional outlet; if they're meant to be supporting the patient, surely they can't add to the emotional burden by confessing their own fears and insecurities. Even talking to others can sometimes feel like an act of betrayal or a selfish resentment of a sick person's needs.
The costs of caring
In addition to its physical and emotional demands, caring for a person with cancer can have a financial impact as well. Carers can find themselves dealing with unfamiliar financial situations or struggling to keep up with mounting expenses. Even if health care costs aren't a problem, there can be a lot of hidden costs to being a carer.
The financial costs of being a carer can come in two forms: some are direct costs, while others are caused by loss of earnings. Direct costs are often transport-related: for instance, a carer may find herself having to drive a patient to treatment or just out to do everyday tasks. If you're a carer who doesn't live with the patient you care for, you may effectively be adding a second commute to your life. And if you decide to move in with the person you care for, there will be costs related to relocation.
Some financial strains are more indirect. Nearly 500,000 carers continue to work either part-time or full-time while caring for a cancer patient. Balancing work and caring can be a challenge. The time and energy devoted to care may mean that the carer has to miss work, give up hours or neglect her business. The resulting loss of earnings can be especially stressful at a time when expenses are increasing.
Finally, taking on new responsibilities can mean new financial responsibilities, especially for carers who are looking after spouses, partners or parents. Carers who aren't used to paying bills or managing money may find themselves having to look after the household's finances. Even if there's money to pay the bills, a lack of experience with money management can create problems.
Who cares for the carers?
Fortunately for those struggling with the financial costs of caring, there are several different sources of assistance available. Carers or patients may be eligible for government benefits they aren't receiving, while employees also serving as carers have the right to request help from their employers.
Cancer patients may be eligible for benefits such as the Disability Living Allowance (for those under 65) or the Attendance Allowance (for those 65 or over). Similarly, carers may be eligible for a Carer's Allowance if they look after a patient full-time. In addition to benefits for patients and carers, there are benefits such as Income Support or Child Tax Credit that can help those struggling financially with the costs of care.
In addition to government benefits, charitable organisations also provide support for people with cancer and their carers. Macmillan Cancer Support Grants can help carers in emergencies. The charity also provides support and advice for carers struggling with any aspect of dealing with cancer.
One of the best ways to find out about the benefits available to cancer patients and their families is through a cancer charity. Macmillan provides online resources and courses that help carers learn about the support available to them. Information on government benefits is also available through services such as the Citizens Advice Bureau.
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