Hard Times: My brother died of ALS, while I am caring for my stroke survivor wife, in coronavirus lockdown

Today my youngest brother Simon was laid to rest in London, with only his closest family present. He was the greatest brother anyone could have. Also the greatest dad to his kids, greatest husband, son, friend, and colleague. Simon Brennan was a much loved equity derivatives broker who built top ranking desks in Hong Kong, Tokyo and London. He was devoted to his wife and children, and a great athlete all his life. He was immensely popular, adored by friends all over the world. Last May he was diagnosed with the progressive bulbar palsy form of ALS. He battled bravely, beaming his huge smile, while he fundraised furiously for MyName5Doddie (MND foundation) and devoted every waking minute to his family. He died on April 26th, 2020, leaving a large black hole in the universe. He was a uniquely generous, cheerful, gentle and funny guy. His presence was a bright light. We’re bereft, angry, empty, and numb.

My beloved wife Debi survived a hemorrhagic stroke on October 2 2019. She was in a coma for nine days, then left-side paralyzed, and remained hospitalized for 15 weeks until she came home mid January. Unable to move around independently, and with part of her skull bone recently re-inserted by cranioplasty surgery, she requires 24x7 help and supervision. She has been relearning motor skills and building cognitive and perception skills, and has come a very long way since January 10 when she came home. She is 57.

She trusts me, loves me, and knows I am dedicated to her wellbeing, no matter how well or not well her recovery is going. She has been cheerful, optimistic and gentle, most of the time. Occasionally she has sunk into a temporary despair, fearing she may never again drive a car or return to work in the beautiful hair salon she created five years ago.

We were already in our own form of lockdown: Debi’s friends were keen to visit, but I as the introvert, was reluctant turn our home into a general drop-in visiting center. I also needed to protect her recovery from two people whose situation does not always align with her wellbeing: her two adult sons. I love and care about them both, but three years ago we agreed to create for ourselves a substance-free, safe and sacred home. I organized a Google sheet and a list of trusted friends who could sign up for shifts to care for my wife, and this would allow me to work (or exercise) while a friend cares for my wife. It was a magical solution. We also started a GoFundMe page, asking friends to help if possible, as both our incomes went down by 50%, then 75%, and now to zero. We are broke. Friends have been incredibly generous.

I attempted to continue working while caregiving. I manage a technology consulting business and my team picked up the slack where possible, allowing me to be a 2-hours-a-day slacker manager. It hasn’t worked. Business has been declining since October, to a pathetic trickle of revenues each month.

Then, coronavirus hit us all. Suddenly no friends can visit. We have a paid caregiver for a few hours each day. Physical and occupational therapy comes to us. She can’t feel her left side well. She fall and get hurt if nobody were there to catch her. She has short term memory problems and confusion. Her ability to make decisions is impacted. She may recover to 100%. Or 90% would be OK.

I’m sad. It’s easy to go into victim thinking. Sadness can be a bus stop on the route to somewhere better. Or it needs to be pushed off the table: healthy grieving, then find things to smile about. I’m in fear. What is my new role is permanent caregiver, no career, no money, no dreams, and what if my wife can’t recover to a good quality of life? I’m numb. While I haven’t fallen apart or curled up into fetal position, I am strangely removed from my feelings, keeping busy and filling my head with dreams of future good times. I’m also a little too agitated and distracted to focus well at work. I’m dissociating, so that some of the time the sadness is pushed aside by fantasies of a parallel and better universe.

I’m not religious, which is good because I would be very angry at any god that deals cruelty like this. I do believe in some kind of higher power, guiding me and steering me, helping me make the next right decision. Not powerful enough to be a cruel god. With my brother Simon taken from us, and my wife so severely injured, I feel robbed of so much. I miss our old life, but a new and very good life is still possible after we get through this time. The key will be to remain optimistic, imaginative, positive and generous. A difficult task, when my grief is pulling me toward a bitterness and meanness I recognize in others but don’t want for myself. We have the most amazing friends. They teach us that even when we feel like recoiling, reacting negatively and angrily, instead we can try to help someone, brighten their day somehow, and remain gentle to ourselves. I can imagine the man I want to be after these hardest of times, and practice being him today. Imagine the couple Debi and I want to be when she recovers and is healthy, and we can start being them today even while held down by daunting challenges and immense sadness.

I hope we will come back from this as kinder, more gentle people, still able to go out and pursue our dreams, work hard, enjoy life, but to treat each other with a little more kindness because of what we learned in hard times.

San Francisco geek, entrepreneur, wannabe economist, mediocre equestrian