Bereavement and cystic fibrosis
Find out more about the support available to help you cope with the loss of a loved one with cystic fibrosis (CF).
Coping with the death of someone close can be one of the hardest things we ever have to deal with. Grief is a very personal journey with no set timescales for coping or limits on what emotions and feelings you may, or may not, experience. As well as the emotional burden, it’s not uncommon for people who are grieving to feel physical effects of the stress, including loss of appetite, lack of concentration and difficulty in sleeping. It’s not surprising that sometimes bereaved people say they feel like they are ‘going mad’.
There isn’t any one way to cope with grief, it’s different for everyone; some people find bereavement support groups helpful, others find solace in talking with their own friends and family; some people want time out from ‘normal life’ and others prefer to get back into their daily routine – there’s no right or wrong. It is useful, however, to draw on any support you have available to you at this time; friends, family, your GP or even the CF team may be able to provide some support and help you through your grief.
We have developed a series of booklets, in partnership with people affected by the loss of a loved one, CF clinicians and social workers, to support families affected by bereavement through cystic fibrosis. There are three booklets, the first giving a more general view of bereavement and the others focusing supporting a child through bereavement and losing a child of any age.
- Losing someone to cystic fibrosis: coping with bereavement (PDF).
- Supporting a child bereaved through cystic fibrosis (PDF).
- Bereavement: losing a child of any age to cystic fibrosis (PDF).
You can downloads these leaflets or contact our helpline on 0300 373 1000 or firstname.lastname@example.org to request hard copies.
Advance care planning
We have created an advance care plan form for people with CF to fill in, either alone, with family or their clinician. This form can help you to plan what your wishes would be in the event of a significant decline in your health. By recording your wishes in this document it means that both your family and the CF team will know what you would prefer when you become more unwell and reach the end of your life. It is not always possible to follow all your wishes at the time but by recording them it means your CF team can do their best to follow these wherever possible.
The form can be completed all at once or in stages, and a member of the CF team involved will be happy to discuss it at any point.
Our Helpline team are available to contact on 0300 373 1000 or by emailing email@example.com and while we can’t offer specialist bereavement counselling, we can provide a listening ear and signposting to further sources of support.
The government has some useful, practical information on what to do after a death, including how to register the death, notify government departments and manage financial issues.
Research we fund
The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis.
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Contact our wonderful helpline team by telephone or email, Monday to Friday, for answers to your questions.