Parkinson's disease does not affect just one person - family and friends all have to 'live' with Parkinson's too.
For a person with Parkinson’s, a caregiver is indispensable. A caregiver is someone - partner, spouse, friend or adult child - who lives with, regularly helps or looks after a person with Parkinson's disease. A caregiver is not only responsible for providing assistance in the daily care activities, but is also a constant support and companion for the person with PD. Being a caregiver can often be physically and emotionally challenging. Just as the care of the person with PD is important, the care and well being of the caregiver too is, imperative.
Optimizing your role as a caregiver
- Try and take an active rather than a passive role in the treatment and care. Work with the person you are caring for and try to learn all about the condition - its causes, symptoms and treatments. The more you understand, the easier it will be to work through day-to-day problems.
- Try and join them in as many activities as you can or enlist the help of other family members and friends to accompany them. Enquire after and show your interest in the activities of their day, so as to keep their spirits high.
- In your role as caregiver you are a central part of the health care team ensuring that the person with Parkinson's can receive the best treatment possible. Network and interact with the team closely. You will find that with their help you are able to create a successful problem solving model applicable to the person in your care.
- It is important that the person with Parkinson's disease visits their doctor regularly for check ups. Whenever possible, go with them so that you can discuss any symptoms, observations or concerns that you may have with their doctor.
Caring for oneself
We realize that, just as much as for the patient, it is not easy for the caregiver and the family to accept the diagnosis of an illness, more so one that you know little about. Everyday seems like a new learning. The reactions of the patient and caregiver usually mirror each other.
As one acquires the role of ‘the responsible one’ ‘the protector’ and most importantly the “one to be strong and provide strength’, we emphasize the need to ‘care for oneself’ in order to be able to sufficiently care for the person with PD.
Some suggestions for caregivers self care
- Pursue and develop your interests (creative pursuits, reading, writing, spiritual interests)
- Create a social network (friends, family, outings etc)
- Attend to your fitness and health (yoga, exercise, diet, specific ailments: diabetes etc)
- Understand that it is acceptable to have mixed feelings:
- Understand that you cannot create or cure illness, but can help relieve discomfort.
- Talk about it: Do not keep your emotions inside—develop a support system
- Set your own goals: You should decide what you can and cannot do. Do not let doctors or other family members decide for you what you should be doing.
- Share responsibility. It is ok to ask for help and the variety in company is welcomed by patients too.
- Be proactive, take initiative and get involved in the activities. Company is a great motivator.
- Get involved in programs to create awareness about the condition. This helps you meet more people, share more perspectives.
In India, we have a cultural advantage, in that the care is easily shared within family and help and support are easily available. Moreover the interactions with medical and para-medical professional are also mutually respecting and usually very fruitful. Make the most of this!