Caring for the caregiver

People with Parkinson’s disease and their primary caregivers can go through several phases of adjustment following a diagnosis:

1. Denial

This phase occurs when a diagnosis of Parkinson’s is made. In the beginning 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, it is likely you will come to terms with the situation.

2. Information

You will increasingly learn more about Parkinson’s disease and the implications it will have in your lives: increased dependence of the person with the disease and daily commitment of the primary caregiver. This is the time when you will need resources that can help both of you: physical exercise, balanced diet, support groups.

3. Reorganisation

The moment will come where you will need to reorganise your daily life: schedules, home adaptations, planning daily activities, etc. At this point, it is important to have all the necessary support – economic, social, emotional – so that the primary caregiver is not overburdened.

4. Adaptation

Finally, both of you will adapt to the new situation. It can be a long and hard process, but if you have the necessary information and support, you can maintain a good quality of life.

Caregiving can be a very satisfying and positive activity in a person’s life.

It is a great opportunity to feel useful and provide crucial support to a friend or loved one who needs help.

However, the nature of caregiving can create considerable stress or burden. If you are caring for someone with Parkinson's disease, you know all too well the influence it can have on your own wellbeing, whether that is physical, emotional, social, or financial.

Consequently, it is important for caregivers to receive care that helps them cope with the situation.

1. ACT AND THINK POSITIVE

When someone in the family has Parkinson`s disease this can influence the behaviour and emotions of the whole family. So, it’s important to maintain a positive attitude.

2. BE PREPARED

It is important for the primary caregiver to gather and understand any necessary information on available resources. This will help them to understand what changes to expect in their loved one's behaviour or symptoms and how they can best help when those changes occur.

If possible, the caregiver should accompany the person with Parkinson`s disease to their medical appointments and direct any necessary questions to the doctor or nurse. The caregiver needs to determine how much they can and can’t do themselves and what type of outside support is needed.

3. TIME MANAGEMENT AND PLANNING

Good planning is essential, both for the person with Parkinson’s and the primary caregiver. Making schedules that include caregiving activities (appointments with the doctor, medication schedules, exercise) as well as periods for rest and recreation for the caregiver is recommended.

The caregiver needs to be realistic about how much support they can provide – don’t try to do it all alone. It is important to share the responsibilities of care with others – either other members of the family, friends, or by involving professional care providers.

4. SELF-CARE

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 indicate overload: sleep problems, fatigue or mood changes. Symptoms of stress may also appear.

It is crucial for the caregiver to rest and to learn relaxation techniques that help them to manage negative emotions. If necessary, ask for help from their doctor or another qualified healthcare professional.

It is also recommended for caregivers to join support groups, if possible. Support groups are a great place to ask for advice and find out about useful resources, coping strategies and to exchange information. There are also online support groups to ask and receive support in a more anonymous or flexible approach.

Caregivers should also find time to rest, take breaks, ensure they are eating properly, and keep social activities, to remain as healthy and happy as possible. This will benefit both the caregiver and the patient they are caring for.