When you are diagnosed with a life limiting illness, you will find there are many things to consider. They will be challenges for yourself and for people who are close to you. It is important to prepare yourself for changes that may occur in all areas of your life, and to find where you can receive support to assist with these changes.
Lifestyle Changes One of the overriding considerations will be to maintain quality of life. This may involve a decision on whether to continue working, and how things may have to change in your work duties and time frames.
Health professionals will assist with information on possible physical changes such as pain and other symptoms like tiredness or loss of appetite. You may also have to deal with changing emotions and feelings, and a decline in your mobility and independence. You may sometimes feel overwhelmed with these challenges, and it is important to remember that support is available from health and allied health professionals. Other changes that may affect your quality of life include being unable to socialise or spend time with your family and friends.
Some of these changes can be expected and planning is useful in adapting to these. It is easier to plan if you understand your illness and your prognosis. This is whether your illness can be cured or only stabilized for periods. You should also understand the goal of any treatment. For example…is it to treat a particular symptom, to slow progress of your illness, or to improve your ability to do the things you need to do or enjoy.
Emotional Challenges It is normal to have changes to your emotions and feelings. This is particularly true if you, or someone close, are seriously ill or nearing the end of life. It is common for the burden of worry to be so great, that symptoms of anxiety develop.
This can include difficulty concentrating, feeling continually tired, feeling restless or edgy, or have difficulty in falling or staying asleep. It is a natural reaction for anyone dealing with a serious illness to feel sad, moody or low for periods of time, and you will need time to adjust. Talking to those closest to you about your depressed feelings may help, or your doctor or a psychologist will be able to help you understand your feelings and address any emotional problems.
Managing Stress It is important to learn to manage your stress. It can be helpful to:
- Maintain social contact
- Use relaxation techniques eg meditation & slow breathing exercises
- Learn exercise routines
- Plan adequate sleep times
- Reduce alcohol consumption
- Plan time for activities you enjoy
Communicating Symptoms will most likely change over time. Talk to your health care team about any symptoms that you’re experiencing, as there are many ways to help manage your symptoms to reduce their impact on your everyday life. Always let them know if any of your symptoms improve or if they get worse, as this may affect your medications or other therapies.
Do not be afraid to ask questions or to include a carer or family members in appointments or care sessions. It may be that you do not want certain people to be aware of what is happening. Let your health care team know who they can and cannot share your information with.
Finances Many palliative care services are free, but there may be some costs associated with hospital & hospice care. You may need to pay extra for equipment & medications. It is important to ask questions about all of the options available to you.
Workplace Your work can represent a sense of identity and independence in an uncertain world. Your illness may also affect the people that you work with. The seriousness of your illness needs to be acknowledged and talked about.
Planning Ahead Take time to think about what really matters to you. It may be that you just want to live the rest of your life as well as possible within the limitations of your illness. Give some thought to any conversations that you would like to have with people close to you. There may be issues you want to resolve. Planning ahead must include preparing & discussing with people close to you, a Health Directive, Advance Care Plan, a Power of Attorney, Will and even your funeral arrangements.
Spirituality Spirituality is not the same as religion. However, religion can give a basis for spiritual expression or a spiritual community. Your personal view of spirituality may include dignity, compassion, empathy, joy, hope, love or humour. Spirituality can assist people to make sense of their lives, & find strength in difficult times. Pastoral care workers and chaplains offer spiritual support.