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Caregivers provide practical support to people living with chronic conditions like Parkinson’s. They may be family members, hired professional staff, or volunteers.
The caregiver provides support by assisting in activities necessary for the person’s wellbeing and quality of life, that they may be unable to perform on their own.
People with Parkinson’s disease and their primary caregivers tend to go through several phases of adjustment, following a diagnosis:
Denial. This phase occurs when a diagnosis of Parkinson’s is made. At first, you and the person or people who care for you may find it difficult to accept the diagnosis but, with time, and as you learn more about the condition and how it can be treated, you will come to accept it.
Information. You will gradually learn more about Parkinson’s disease and the impact it will have on your lives, for example the increased dependence of the person with Parkinson’s on the caregiver, and the daily commitment of the primary caregiver. You will need to do things that help both of you, such as getting regular exercise, having a healthy diet and building a support network.
Reorganisation The moment will come where you will need to reorganise your daily life: your schedules and your home set-up, for example. At this point, it is important to have all the necessary support in place – economic, social and emotional – so that you and the primary caregiver don’t feel overwhelmed.
Adaptation Sooner or later, both of you will adapt to the new situation. It can be a long and challenging process, but if you have the necessary information and support, you can maintain a good quality of life.
What does it mean to become a caregiver?
Caregiving can be a very satisfying and positive experience.
It is a great opportunity to be useful and to provide crucial support to a friend or loved one who needs help.
However, caregivers need to make sure that they look after themselves as well. They, too, have physical, emotional, social and financial needs.
How can you care for a caregiver?
BE POSITIVE When someone in the family has Parkinson`s, this can have an impact on the behaviour and emotions of the whole family. So, try to maintain a positive attitude as much as possible.
It is important for the primary caregiver to be equipped with useful information and to know what resources are available to them.The right information will help them to understand what changes to expect in their loved one's behaviour or symptoms, and how they can best help if those changes occur.
If possible, the caregiver should accompany the person with Parkinson`s disease to their medical appointments and be on hand to ask any necessary questions. Everyone’s different, so the caregiver needs to be realistic about how much they can and can’t do themselves and what type of outside support they need.
TIME MANAGEMENT AND PLANNING
Good planning is essential, both for the person with Parkinson’s and the primary caregiver. It’s a good idea to have a schedule that not only includes caregiving activities (such as appointments with the doctor, medications schedules and exercise) but also periods of rest and recreation for the caregiver.
The caregiver shouldn’t have to do it all alone. It is important that they share the responsibilities of care with others – either with other members of the family, friends, or professional care providers.
Probably one of the most important, and sometimes difficult, things caregivers can do is to take care of themselves.The caregiver must know how to identify warning signals that can indicate burn-out: sleep problems, fatigue, mood change or symptoms of stress for example.
It is crucial for the caregiver to rest and use relaxation techniques to help them manage their emotions. Caregivers should not be afraid to ask for help from their doctor or other qualified healthcare professional.
It is also a good idea to join a support group.These are great places to ask for advice and to find out about useful resources, coping strategies, and to exchange information. There are online support groups where caregivers can ask questions and receive support in a more anonymous or flexible way than face-to-face groups.
Caregivers should also find time to rest, take breaks, and ensure they are eating properly, and enjoy social activities, to remain as healthy and happy as possible. This will benefit both the caregiver and the person they are caring for.
Hello Jon, welcome to MyPatchandMe™.
Your opinion is very important to us in order to understand how you are managing your disease and treatment and to make this support programme the best experience for you