Stroke of Luck

Until I read the HBR article on Sheryl Sandberg's new book, 'Option B', I kept my personal blogs to Facebook. My friends who straddle my personal and professional tell me that my blogs 'set off their self talk'. They make them think. And they could help.

My blog is about a man who got a stroke and on his family. Sharing our lessons from over a decade to caregivers. We may be called upon to play the role anytime. This is what helped our patient find their 'new normal'.

A supremely independent man who has lived life entirely on his own terms, our father, Vasant Samant lost all that was dear to him by one stroke of bad luck. Losing his speech and become hemiplegic, paralysed on the left side of the body. It was on the early morning of the 3rd of June 2006, months after his 70th birthday, that we found him fallen helpless in the living room of his Andheri apartment.

A fighter, he did not however, lose his will to live and has been at life for 10 years. His is a daily struggle made sweet with his cheerful countenance and his indomitable will or ‘jidda’, one of the first words he started to phonate.

His daily practice of writing with his left hand, his walk, interactions with home staff and caregivers keep him on the road to recovery after his stroke. When the top-notch neurophysician, Dr. B. K Singhal, met our father during a follow-up consultation, 3 years post stroke, he pronounced, ‘Aamir Khan should make a movie on him’.

We embarked on a well-planned journey from the time he was in Bombay Hospital. Planning his return and re-organizing his life and ours to facilitate long term care.

On the 10th anniversary of his stroke on 3rd June 2016, are 10 lessons to caregivers drawn from our experience and journey of inspiring and being inspired.

1. Acknowledge and accept: Accept the situation objectively. Plan and re-orient your life to the ‘new normal’. It is stroke of luck that the patient is alive, vital and keen to recover. Feel grateful that you and your family have been chosen to partner in the patient’s recovery.

2. Believe in the recovery: Keep the faith. Find purpose and meaning in the event. Know and seek lessons to be learned. Finding meaning liberates anger, frustration, sadness, regret and complaints. It channels positive energy into the situation.

3. Respect: Don’t patronize or be supercilious or superior. Recognize that the stroke has affected the brain and functions. Their thought process and behavior may change, but there is an unchangeable core. Give them time and space to ‘reclaim’ this self. Help them find it with artefacts, pictures and stories.

4. Realism: Be realistic and practical. Show them the vision of recovery, allow them daily actions that improve and maintain their condition. Help them visualize what could be worse. A fall, immobility, not having a supportive eco-system. Encourage them to take up acts of independence but sound them on safety.

5. Love: Unconditional loving compassion, kindness, affection and humor is a non-negotiable.

6. Patience: Recognize that the patient will have their mood swings – anger, frustration, sadness. Give them psychological air. Let them know you understand without judgment. Let the moment, incident, situation pass. Allow them their dark days. We all have them.

7. Engagement: Spend scheduled time. Develop a routine and stick to it. Engage by observing, listening, informing them of your day. Participate in sharing news, events. Read, watch, play with them.

8. Inclusion: Keep them as an integral, participative part of an equation and not on the periphery.

9. Connect and network: Connect with the patient’s friends, relatives, colleagues, caregivers, doctors, therapists. Enlist and co-opt their partnering. Make the recovery a ‘shared goal’. Everyone is working to the same cause of reclaiming ‘wholeness’. Acknowledge and cherish.

10. Keep the joy: Positivity begets energy to stay invested in the long haul of the road to recovery. Celebrate wins, big and small milestones.

It is a stroke of luck that the patient and you are on the long journey together.

Make every moment count.

#caregiving #optionB #fitforlife