Tips & Strategies For A Parkinson's Disease Caregiver

Shraddha Kinger, a psychologist working with Parkinson’s Disease and Movement Disorder Society, Mumbai, shares tips and strategies for a Parkinson’s Disease caregiver.

If you are a caregiver for someone with Parkinson’s, there are two roles played by you: Caring for your loved one and caring for yourself. While the phrase ‘caring for yourself’ may seem clichéd and hard to achieve, the important thing to remember is that it is one of the most accurate but neglected clichés. You can only productively take care of someone if you are taking care of your needs. Here are some tips and strategies that focus on both the roles that you play.

Caring for your loved one

1) Educate yourself about the symptoms, treatment and progression of Parkinson’s Disease. It is natural to have questions and feel apprehension, but it is only when you understand the disease well that you can respond to challenges more effectively. Staying informed about the possible progression of symptoms will help you feel more prepared.

2) Try to be as organized as possible – maintain a calendar or a notebook where you can jot down doctor appointments, medications and notes on any changing symptoms. Being organised with medical files and prescriptions will also help the team that you discuss your loved one’s health with.

3) Keep a watch over your loved one’s physical and mental health. The role played by exercise in Parkinson’s is an extremely important one, so motivating your loved one to exercise is crucial. Find ways to motivate the patient that go beyond reminding him/her about exercise. Join a yoga class or take a walk together regularly, set goals for him/her and appreciate every effort to do better, and take care of his/her diet. As a caregiver, you likely spend the most time with your loved one and understand his/her moods. If you notice any signs of depression or anxiety, talk with his or her doctor.

4) Encourage your loved one to participate in activities and let them try to do things as independently as possible (taking into consideration their present ability and safety). They might take some more time, and may struggle a bit more than usual, but will feel more confident and productive. Try to not highlight the difference of how well they used to do things and how they are doing now – the point is to encourage tasks done independently in the present. A sense of confidence comes from trust shown by family members and friends.

Caring for yourself

1) Your physical health is as important as your loved one’s health. Take time to go for a brisk walk or a run, join a group exercise class or enrol for a gym membership or relaxation class. Make sure that you get regular health check-ups and visit a doctor yourself. Vigilance and physical activity will help you relieve your stress and increase your energy.

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2) Take time out for yourself and engage in activities that you like. This could be for just half an hour a day. Continue to meet with friends, participate in hobbies or groups, and maintain a schedule as normal as possible. Do not feel guilty about taking time for yourself. It is only when you are less stressed that you’ll be able to provide the best care to your loved one.

3) Nobody can do everything at once. To feel less overwhelmed, set realistic goals for yourself (as well as for your loved one). Ask for help if possible when there is too much going on, and recognise that you are human and will feel burdened and stressed at times. Friends, family and other kinds of help are present and will show up for you so you can take a break.

4) Join a caregiver support group to remind yourself that you are not alone in your struggles and small victories. Sure, others’ experiences may not always and exactly be the same as yours, but there will still be a lot in common you may find. The very fact that some experiences will be different or the same means that there will be a lot to learn from each other, and a chance to support each other. Sometimes it can be hard to share everything you are feeling with members at home. A group will listen without judgment and be there for you.

5) Appreciate what you are already doing as a caregiver, which is a lot. If a friend were to come to you in your position, what would be the advice you would give them? Treat yourself the same way, with compassion and patience.

It is important to recognise that PD need not affect the relationship and bond that you have always shared with your loved one. It is good to do enjoyable things with your loved one, or even just talk to each other about non-PD related issues, from time to time.