PALLIATIVE CARE JOURNEY
Self Care
Self care means looking after yourself in a healthy way. If you have a long-term condition this includes issues such as making changes to your diet, different types of exercise or different types of medication you may need to take. Self care also means staying active by doing things that are important to you, such as gardening, seeing friends and family, going on holiday, or continuing to work, if possible. It involves looking at what you can do and want to do, rather than what you can’t do.
Receiving a diagnosis of a life limiting illness initially throws most people into a spin. It can take time to emotionally adjust to the news, to get your head around what this means and readjust your coping. It is normal to worry about many things, including:
- possible symptoms,
- how you have/are changing (physically and emotionally),
- practical issues, such as finances,
- people who are important in your life,
- the future.
The effects of the disease or its treatment can cause fatigue, anxiety or depression, altered body image and loss of self-esteem. Altogether, this may mean you feel overwhelmed at times.
It can be important to think about your strengths and draw on how you coped with other difficulties in the past. Remember the activities that would normally help sustain your well-being and consider how you can draw on these activities now. However, it is normal to feel a sense of loss and grief at all that has changed in your life. It is important to allow space to express these difficult thoughts and feelings too.
Identify someone who you can begin to talk to – a friend or family member. Sometimes it can be difficult share initial thoughts and feelings with those closest to you, or to answer questions about your illness or the future, particularly from children. Your healthcare team will have people whom you can talk to. This can include individual and family support, counselling, practical supports and stress management. Remember, conversations take place over time and not everything needs to be discussed at once.
Written by Niamh Finucane, 2014
If you are a caring for someone with palliative care needs please follow this link to find out more information:
Caring for Carers
Useful Links
Carers Organisations
Republic of Ireland
Care Alliance Ireland
Care Alliance Ireland is the National Network of Voluntary Organisations supporting Family Carers. Our vision is that the role of Family Carers is fully recognised and valued by society in Ireland
Family Carers Ireland
The Carers Association and Caring for Carers Ireland came together in 2016 to form one stronger, dedicated, carer-centred organisation..
Northern Ireland
Crossroads Caring for Carers
Crossroads Caring for Carers is a Northern Ireland based charity. Since 1984 Crossroads has provided respite care for carers, who provide care for an elderly, frail, ill or disabled friend or relative. Crossroads aim to meet the needs of carers by providing them with a much-needed break whilst providing peace of mind that their loved one is well taken care of by a Crossroads care attendant.
Carers Northern Ireland
Every day Carers UK hears from people who need help with looking after a friend or family member. They might be new to caring and struggling with navigating the maze of services or they may need extra support to cope with the pressures of caring.
Carers Trust NI
Carers Trust is at the heart of support services for family carers in Northern Ireland. It currently provides support through its network partner Newry & Mourne Carers and also runs a direct service to carers over the age of 60 through its Big Lottery Funded “ Mind the Gap” programme
Useful Downloads
The needs of the person may often come before your own and this can mean that you struggle to manage everything. However, it can be easier to cope if you look after yourself properly.
It is important that a family caregiver realises that she or he is not alone. Getting support will help reduce caregiver stress, and the associated physical and emotional risks of ongoing stress.
The demands of caregiving can be overwhelming, especially if you feel you have little control over the situation or you’re in over your head. If the stress of caregiving is left unchecked, it can take a toll on your health, relationships, and state of mind—eventually leading to burnout. The following website offers tips, guidance and downloads on how to avoid and recognise carer burnout.
When your partner, relative or friend is ill, you may find you’re the best person to support and care for them.
If you have a terminal illness and want to be cared for at home, this booklet is for you.
Wherever possible, Marie Curie, the NHS and other care organisations will support your wish to be cared for at home, and provide services to help you achieve this.
