If you are reading this for the first time it probably means that you are supporting someone has aspergillosis. Aspergillosis can be a very long term illness with lots of ups and downs. Patients are often given steroids (and other medications) to take for a long time and that can have many side-effects (side effects of steroids) that are both emotionally and physically draining, both for you and the person who has the infection.
It often feels like there is an endless path in front of you both that you have to keep treading and you will already be getting lots of support from the medical profession to help the person who has aspergillosis but it is also very important that you, the carer, is also cared for and supported. Often apparently ignored by governments and hospitals, carers provide a vital service even if they do do it for love rather than financial reward! Governments do provide some financial support for qualifying carers and seem to be recognising the importance of carers in their more recent policy changes (listen to the talk given by Steve Webster of the Manchester Carers Centre, June 2013) by providing a new emphasis on their support.
Why do carers need support?
(Taken from the carers.org website) Carers are the largest source of care and support in each area of the UK. It is in everyone’s interest that they are supported.
- Taking on a caring role can mean facing a life of poverty, isolation, frustration, ill health and depression.
- Many carers give up an income, future employment prospects and pension rights to become a carer.
- Many carers also work outside the home and are trying to juggle jobs with their responsibilities as carers.
- The majority of carers struggle alone and do not know that help is available to them.
- Carers say that access to information, financial support and breaks in caring are vital in helping them manage the impact of caring on their lives.
Carers experience many different caring situations. A carer could be someone looking after a new baby with a disability or caring for an elderly parent, someone supporting a partner with a substance misuse or mental health problem. Despite these differing caring roles, all carers share some basic needs. All carers also need services to be able to recognise the individual and changing needs throughout their caring journey.
Carers often suffer ill-health due to their caring role. To care safely and maintain their own physical and mental health and well-being, carers need information, support, respect and recognition from the professionals with whom they are in contact. Improved support for the person being cared for can make the carer’s role more manageable.
Carers need support to be able to juggle their work and caring roles or to return to work if they have lost employment due to caring.
Post-caring, carers may need support to rebuild a life of their own and reconnect with education, work or a social life.
With an ageing population, the UK will need more care from families and friends in the future. This is an issue that will touch everyone’s life at some point. Carer support concerns everyone.
Carers in the UK can get practical support! This can take the form of meeting with fellow carers online where problems can be shared and halved or phone support, but can also take the form of practical help, with money to help with the purchase of useful items like a computer, driving lessons, training or just a holiday, advice on applying for benefits and grants that many carers are entitled to and even help with holiday breaks for yourself or even the whole family. Local groups often run activities and days out designed to give you a change of scene and something else to think about for a while.
Last but certainly not least, caring for an ill person can itself be extremely emotionally and physically tiring. Remember to take care of yourself before caring for the patient - you are no good if you are too tired to work and think efficiently.
Those who can attend the Support Meetings at the National Aspergillosis Centre will find that we often encourage separation of patient & carer in a break between talks and we find that that allows carers to chat amongst themselves - often about subjects they find more interesting than patients might! We also provide an extensive library of pamphlets and booklets for carers.
UK - Carers Benefit.You could get Carer’s Credit if you’re caring for someone for at least 20 hours a week.
Support in the US (including financial support)
There is support available for Caregivers at this US government website
Aspergillosis Meeting for Patients & Carers
The monthly meeting for patients that we hold every month at the National Aspergillosis Centre is also open to carers and many attend every meeting.
Workers with Manchester Carers Centre often attend the meeting and a breaktime we try to hold a separate conversations with carers in order that they may air their specific views and needs. There are similar groups in many cities throughout the UK and you can get information on those groups via the Carers Centre or by contacting CarersTrust
If a carer is a child (under 21 years of age) then they can also get support via Help Young Carers who support, organise breaks and holidays and hold events for young carers.
Carers Rights Movements - International
The Carers rights movement attempts to address the issues of low income, social exclusion, damage to mental and physical health and lack of recognition that have been identified by research articles and studies of unpaid carers (or caregivers as they are known in the USA). Restrictions on the freedom and opportunities of unpaid carers caused by the heavy burden of caring have given rise to the Carers rights movement. In social policy and campaigning terms, it is vital to make a clear distinction between this group and the situation of paid careworkers, who in most developed countries have the benefit of legal employment protection and rights at work.
Information provided by the US government