Becoming a Carer
For most carers and patients, receiving the diagnosis of a primary malignant brain tumour, is completely unexpected and shocking. Sometimes, after receiving the diagnosis it is possible to spot some of the symptoms and changes that have been occurring gradually over time. Some carers’ talk retrospectively about noticing changes in behaviour long before any physical symptoms have appeared. For others, the diagnosis is extremely quick, with symptoms such as seizures, speech problems, and difficulties in walking and balance appearing very suddenly and unexpectedly.
Gathering information about the diagnosis in the early stages can be difficult. Carers and patients say that taking in information given at this time is difficult and sometimes overwhelming. The hospital where treatment is taking place is a good starting point for finding out more information, when you feel ready. Talking to your clinical nurse specialist is also helpful, and your GP could direct you to sources of information. Some recommended websites are also listed here on this site.
As a carer, you will be thrust into a new world and role and this is an extremely difficult time and many carer’s describe juggling family, work and caring as a challenging task. One carer described how ‘a carer never stops, it’s a 24 hours a day, 7 days a week job’. Therefore caring is an exhausting job. Becoming a carer may mean that you find yourself responsible for jobs that you previously shared with your partner/family member, such as cooking meals, completing household tasks and managing finances.
Getting time off from caring is something that is highly valued but difficult to achieve. Being able to recharge your batteries and look after yourself is extremely important when you are a carer. A useful website to look at even though it is not specifically about people with a brain tumour is: www.carersuk.org/newtocaring. It has a ten step list of how to get support (both emotional, practical and financial) and covers many problems encountered by all carers. They have a free advice line on 08088087777. If you search on this site for Advice Guides for Carers you will find a comprehensive and easily digestible guide which you can order from their advice line or download from the internet.
Another organisation which might be useful to you if you can’t find a brain tumour support group in your area is: www.crossroads.org.uk. On the home page you will find ‘scheme finder’ which shows all the support groups they have running, for carers, in different areas of the country.