Support for carers
It is a very strange time when you stop being somebody’s husband, wife, parent or partner and become their “carer” in the eyes of so many people, and you may find it difficult to accept this term – certainly it is helpful to ignore it at times and remember that you are still yourself as an individual with your own needs and desires.
However you have probably realised that the term "carer" is defined in law and is a crucial passport to benefits & support services, so it is a helpful term in certain circumstances and the reason why we use it on our website.
Never forget though that you will need at least as much support as the person who has been diagnosed with a brain tumour, and that you are no less important than they are. Time spent looking after yourself is indirectly a benefit to them, as it will enable you to stay strong and in turn able to help them. We are all able to function better if we have regular breaks from the stress in our lives, and you are no exception!
Astro Fund have set up a new online support group aimed specifically at carers.
Sometimes there are issues that you would like to discuss with other carers, which are either very difficult or not appropriate to discuss with the brain tumour patient. This group offers you the opportunity to talk freely about your hopes and fears, sharing experiences and supporting others who are experiencing or have experienced similar challenges to those which you are facing.
This group has a particular emphasis on sharing constructive coping strategies, inspiring thoughts and invaluable resources available across the globe, to help each of us find many moments of peace and happiness in the midst of turmoil, and ultimately to emotionally survive whatever life may bring our way.
To access this group please click here.
Support for all carers
Headway is an organisation offering top quality information about coping with somebody who has a head injury, symptoms of which are exactly the same as a brain tumour. We particularly recommend the book "Head Injury" by Trevor Powell, pub.Speechmark. They have numerous local branches who offer social and support opportunities for both carers & patients, although their day centres are unfortunately not usually open to those with brain tumours as they focus purely on head injuries from accidents. Tel. 0808 800 2244
Carers Direct is a national information, advice and support service for carers in England. It provides accurate, relevant information for carers and those who support them. Click here for full information
The Princess Royal Trust for Carers is the largest provider of carer support services in the UK. They provide a network of Carer Centres, as well as chat groups via their websites at www.carers.org and www.youngcarers.net Finding a Carers’ Centre in your local area will provide an invaluable networking opportunity for you with regard to support in your local area. Tel. 0844 800 4361
The UK Government Department of Health has a 'Caring for Someone' section of their website at www.direct.gov.uk It provides details of relevant services and benefits, as well as links to many other useful sources of information.
Time to Care is a website produced by Help the Hospices for carers, and professionals working with carers. It includes information about publications, and other organisations who may provide support in your area.
The NHS runs 'Looking After Me' courses for adults who care for someone living with a long-term health condition or disability. As its name implies, the course is about you making time to look after your own health needs. It aims to help you to take more control of your situation and make a difference to your life, as well as making new friends at the course itself! These short courses (6 weekly half day sessions including lunch) include many different topics including relaxation and stress management techniques, as well as information about improving communication with health professionals. The programs are free and are held in locations throughout the UK. www.expertpatients.co.uk
Carers UK offer a range of free leaflets and information sheets and lobby Government, both local & national, on behalf of carers. Carers Line is available on freephone 0808 808 7777 and is a good place to go if you want helping claiming certain benefits, for example.
Manchester Carers' Forum is a campaigning group that helps carers to access education and leisure opportunities, social opportunities, complementary therapies and short holiday breaks with a small group of other carers. It also holds monthly meetings for carers to share information. Tel.0161 819 2226.
Support for parents of children with a brain tumour
The Paediatric Brain Tumor Foundation is an American charity providing excellent resources relating to brain tumours in childhood, including internet conferences for parents
The Paediatric Low Grade Astrocytoma (PLGA) Foundation is an American charity raising money to fund paediatric LGG research, and their website provides some useful resources for this tumour type
Contact a Family is a UK-wide charity providing advice, information and support to the parents of all disabled children - no matter what their health condition. Their helpline for parents and families is freephone 0808 808 3555 (10am-4pm, Mon-Fri)
Please see our list of Online Support Groups to discover a number of ways in which you can connect with other parents who will help you through all the challenges of having a child with a low-grade brain tumour.
Please see the Support for all page for many links to sources of financial support. However there are a couple of issues which are sometimes hard to discuss with the person who has been diagnosed with a brain tumour, which we have included here.
It can be very frustrating and distressing to be trying to sort out a credit card or telephone bill which is in your partner’s name if they are in hospital or recovering from treatment. It is therefore well worth getting all bills, mortgages and bank accounts converted to joint names, so that you are never left in a situation where a company will not discuss financial affairs, which you consider to be a joint responsibility, simply because you are not officially listed on their system.
One of the most feared effects of a brain tumour is personality change. Whilst this does not happen for everyone diagnosed with a low-grade glioma, it is worth getting Power of Attorney and Enduring Power of Attorney in place well before they are needed, just in case this does happen to your loved one. If the Powers are never required they do not have to be activated, and indeed they can not be activated without a medical opinion, so there is no harm in getting this organised as soon as you both feel able to do so. Your local Citizens Advice Bureau or a solicitor will be able to help, but for basic information click here.
There are many book ideas in the Live Your Dreams – Inspiring Books section of this website, but these are specifically written for carers:
'The Selfish Pig's Guide to Caring' by Hugh Marriott may be just what you need to read. To give you an idea, it begins with the warning: "You think you're a selfish pig. But that's because you never expected to find yourself in the role of a carer, you're pissed off about it, and you feel guilty about your reaction..." The Chief Executive of the Princess Royal Trust for Carers said: "We have needed this book for 20 years. I wish I had been able to read it when I first became a carer."
A book that you may find helpful to share with those around you is "What Can I Do To Help? Practical Ideas for Family & Friends from Cancer's Frontline" by Deborah Hutton, pub.Short Books. Royalties go to Macmillan Cancer Relief if you buy it from their shop.
Fancy a break?
Crossroads provides free "in the home" care to help Carers, giving you time to be yourself. They have local centres throughout the UK and can be contacted on 0845 450 0350
Your social services department will also be able to help you co-ordinate extra carers to come into your home. They can be found via your local council’s website or telephone switchboard.
Do also explore the support available at your local hospice, as they may be able to network to find somebody to give you the help that you need. At the least, they will be able to offer both yourself and the patient some support services at their day centre to give you both a break. You can find your local adult hospice via www.hospiceinformation.info and your local children's hospice via www.childhospice.org.uk
Please see the Live your dreams section of this website for listings of holidays and special days out – these are not just for patients, as the carer can be included on every occasion.
The UK Government offers a number of financial support services for those who are widowed, including help with paying for the funeral if you are on a low income. Other benefits are not mean tested and are available to everyone, but can not be backdated for more than three months. Your Citizens Advice Bureau should be able to help you fill in the forms, which should therefore be done as soon as you can bear to make a start on all the paperwork required at this incredibly difficult time. This is when one of your close friends or relatives could be a huge support, by helping you to deal with all the logistics. There are also a number of charities who are here to support you.
The WAY (Widowed and Young) Foundation provides a self-help social & support network for men and women widowed up to the age of 50, and their children. The main aim is to help those widowed young to rebuild their lives by helping one another.
For support following bereavement, Cruse offers free help through its 194 local UK branches, by providing both individual & group counselling, opportunities for social contact and practical advice. A list of related publications and a newsletter are available. Tel. 0844 477 9400
The book, ‘Death and How to Survive It’ by Kate Boydell is a practical guide on how to survive the loss of a partner, aimed at widowers and widows who need clear, practical advice on how to deal with grief and all the accompanying emotions and practicalities. www.merrywidow.me.uk is the website that supports the book and includes a discussion forum.
Winston’s Wish provides support for bereaved children and young people up to the age of 18, and supports their parents and carers. They offer practical support and guidance to families, to professionals and to anyone concerned about a grieving child. The Winston’s Wish Family Line is open from Monday to Friday, 9.30am to 5pm, and calls are charged at the local UK rate. Tel. 0845 20 30 40 5
The Child Bereavement Trust helps children and their families to cope with bereavement. Tel. 01494 446 648
Compassionate Friends is a self-help group of parents whose son or daughter (of any age, including adults) has died from any cause. They offer a quarterly newsletter, postal library, and a range of leaflets. Personal and group support. Befriending rather than counselling. Helpline Tel.0845 123 2304
PBT Parents of Angels This internet chat group has been established to provide support for parents who are facing end of life issues with a child who has a brain tumor, and to provide extended support for parents of angels who graduated to Heaven after battling a brain tumor.
You may also find some inspiring thoughts in the book "All in the End is Harvest, An Anthology for All Who Grieve" edited by Agnes Whitaker and published by Darton, Longman and Todd