Parkinson’s Disease is a neurodegenerative disorder wherein the symptoms generally develop gradually over years. However, the progression of symptoms is often seen differently from one patient to the other due to the diversity of the disease itself. When you first hear that your loved one has been diagnosed with Parkinson’s Disease, you are likely to experience a range of emotions as you try to wrap your head around the diagnosis and what it means for you and your loved ones. Watching a loved one suffer from a neurodegenerative disorder is difficult and can be hard to accept. However, we must also remember that it is difficult for the patient to deal with the disease. Thus, we need to support the patient by finding that balance between being there for them and giving them the time and space they need to work through their own acceptance levels. Navigating this can be hard on the caregiver’s emotional wellbeing, and thus they also need to find things to do that will help them cope.
When a loved one has recently been diagnosed with Parkinson’s Disease, you may find it hard to believe, be in denial or shock, and feel overwhelmed. At times like this, it could be hard to process everything that is going on around you. For the same:
- Read up on Parkinson’s Disease (use reliable resources).
- Have open and honest conversations with your doctor about what to expect: have multiple small sessions if required based on how much you feel you can deal with at a time. This will reduce your stress levels in the long run.
- If you find it hard to deal with the information coming in from the doctor or feel anxious, consider taking a trusted family member or friend with you to the next appointment. They may be able to process the information better and be able to share it with you when you’re less anxious.
- Focus on what your loved one can do to overcome their challenges rather than the challenges themselves. However, don’t gloss over the challenges either.
- Prepare yourself for your new role if you are going to be the primary caregiver.
- Set realistic expectations from yourself and your loved one with PD.
- There may be additional tasks that you need to do daily. Create a priority list of these tasks and schedule them into your day accordingly.
- Consider delegating some tasks to other family members as well. If required, you can hire some outside help as well. You don’t HAVE to do everything yourself! It's ok to ask for help.
Through this journey, it’s important to remember that you are allowed to feel what you’re feeling: anger, frustration, mental exhaustion, guilt, and the list goes on. It is normal! I’ve had clients tell me that they were told they shouldn’t be getting angry or frustrated but this only added to their frustration as they felt even more isolated and guilty about experiencing negative emotions. We just need to be aware of how we’re feeling, acknowledge it, and continue working on reducing those negative emotions.
Some techniques to help you cope at an emotional level:
- Journal! Explore your feelings honestly.
- Maintain open lines of communication with your loved ones. It is likely others in the family may also be experiencing the same feelings you are: share them with each other.
- Don’t forget to look after yourself as well! You cannot pour from an empty cup. [While this could be hard for you to do, it is the most important thing you can do for your loved ones.]
- Ensure adequate rest.
- Eat healthy, nutritious meals – on time!
- Exercise regularly.
- Find some time for yourself.
- Listen to music you enjoy while working.
- Be mindful of your thoughts, emotions, and actions. If you notice yourself getting irritable or feeling burnt out, take steps to remedy it accordingly.
- Do some deep breathing exercises. Inhale through the nose and exhale through the mouth. Aim to use abdominal breathing.
- Try using the 4-7-8 technique which is also known as Mindfulness Meditation. Inhale for 4 counts, hold your breath for 7 counts, and exhale for 8 counts. Incorporate the above deep breathing exercise into this.
- Consider joining a support group with your loved one – it would help both of you’ll cope better.
- If you find yourself or your loved one struggling with any emotional difficulties, reach out to a mental health practitioner sooner rather than later.
(The author is Ms Ritika Aggarwal, Consultant Psychologist, Jaslok Hospital & Research Centre)
(Disclaimer: The opinions expressed in this article are those of the author. They do not reflect the views of India TV)