Chronic degenerative conditions are conditions where the person's health continues to get worse over a long period of time. Being a Carer for someone with a chronic condition will probably require you to change and adapt your own routines and lifestyle, as the caring role may go on for a long period of time.
The person will gradually become unable to perform their usual tasks of everyday living and their thinking and reasoning abilities may also change. They will probably become progressively more disabled as the condition progresses.
When juggling your role as a Carer, you may need to consider how to:
Understanding an Illness Pattern
Chronic illnesses have different patterns. Doctors call these trajectories. As a Carer, understanding these patterns and how to make the most of the person's remaining quality of life can help you with decision making in the future.
Three common trajectories to be aware of are:
The person's doctor can tell you about treatment options, success rates of treatment, and likely outcomes. This will help you assist the person to make informed choices about their care and treatment in the future.
Dealing with Stress and Preventing Burnout: Constant Stress and its Impact
As well as understanding illness patterns, managing and reducing stress levels is important. Part of this management could be celebrating even a small improvement in the person's condition. Focusing on the positive can help you feel more hopeful and help you continue in your caring role.
As a person's condition gets worse, it can be difficult to hear doctors and other health staff discussing the possible negative outcomes for the person you look after. This may cause stress and sadness for both you as a Carer and for the person with the illness. While it's important to be realistic about the person's condition getting worse, it's important that staff caring for them also let you know about small positive changes. You may need to remind staff that you are realistic, but that you also need to look for some hope in a difficult situation.
Health staff can help you to link in with respite services so you can have a break from your caring role. They can also put you in touch with other Carers in similar situations to yourself. Sharing with peers can be helpful l- other Carers can give you practical ideas about caring, and will be more likely to understand your need to be able to cry sometimes or just vent about your situation.
Our pages under the tab Taking Care of Yourself also have other coping ideas you might be able to use.