A wide range of general health and social care professionals give day-to-day palliative care to people as part of their roles. These include your GP, your Hospital Consultant, District Nurses, Macmillan or Marie Curie Nurses, Social Workers and Care Professionals.
As well as medical treatment, palliative care is aimed at helping you to have the best possible quality of life for the limited time you have left. This includes being as fit and active as your condition allows. Typically it involves:
-The management of physical symptoms, including pain
-Helping you with your mental health
-Help with good nutrition and exercise. Eating a healthy and balanced diet can help you mentally and physically
-Help with practical issues like social care, washing, dressing or eating
-Help with getting your affairs in order
-Giving emotional and practical support to your family and friends.
Palliative care is offered when ‘life-limiting’ illnesses such as cancer, motor neurone disease (MND) and Dementia.
You can receive palliative care at any stage in your illness; typically, people assume it means when death is imminent, but that’s not the case.
There are many misconceptions about palliative care. These include:
‘Planning for the end of your life is a very sensitive and personal experience. It’s important you do what feels right for you when it feels right.’ – Age UK
The feelings caused by a severe illness can be powerful and affect a person’s behaviour. When told they have a ‘life-limiting’ illness, people have many different emotions. All of them are perfectly natural but can be challenging to cope with. It can make it harder for partners, family, and friends to help you. They will also have many of the same feelings too. There is no right or wrong way to feel, and you will cope with things in your way.
It will help you to talk about your feelings with those around you. Tell them how you feel so you can work out ways of coping together.Encourage them to talk about their feelings and listen carefully to what they say.
It’s also vital for you both to learn more about your illness and the emotional effects it can cause. This will help those around you understand what they can do to help and give you both realistic expectations of treatments and outcomes.
Typically those close to you may feel they should be ‘positive’ for you. Tell them you don’t expect them to be positive, happy and cheerful all the time. Explain that it is OK for them to say they feel tired, worried, depressed or angry.
People have different ways of getting support, and it’s generally easier to talk to someone not closely involved. You and those around you might find it helpful to choose other people to talk to. Speaking to a health or social care professional, a counsellor, people in a support group or a close friend or relative can help you and your loved ones come to terms with your emotions.
Taking care of your emotional wellbeing and those around you is as vital for good palliative care as physical care and treatment are.
When a ‘life-limiting’ illness diagnosis comes, it will help you all to plan the practical and physical arrangements for your care. Some of these things may be uncomfortable to deal with but sorting them out in advance will give you all peace of mind.
Making a plan together should include the following:
-Learning more about your cancer, the treatment options and outcomes. The more you know, the less frightening things will feel
-Planning for better nutrition, a healthy balanced diet and more exercise will help you feel better, stay more robust and give better treatment outcomes
-Making advanced decisions about treatments
-Planning and building your care team. This may include loved ones and almost certainly professionals, including GPs, Hospital Consultants, District Nurses, Macmillan or Marie Curie Nurses, Social Workers and Care Professionals.
-Putting in place a Lasting Power of Attorney (LPA) if you don’t want to or can no longer deal with your affairs. There are two types – one for financial and another for health and care, and typically these take 12 to 26 weeks to put in place.
– Make arrangements for after your death, your will, funeral arrangements and any wishes you have for organ donation.
– Helping those around you plan their time, so they balance the time they want to spend with you with their work and other relationships.
Sorting out the practical, legal and financial aspects of your life can help give you tremendous peace of mind and enables you to focus on your quality of life without distractions.
Preparing yourself and those around you emotionally, practically and physically will help ensure you have a high quality of palliative care. Although there is no right or wrong way to feel or prepare, you need to decide how you will cope with things in your way. Closely involving those around you will give you all peace of mind, and it will help make the very best of the time you have left together.
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