My mother was an adventurer like none I have ever read about. She organized the most incredible journeys to the most exotic places on the planet like hiking the path Stanley hiked to find Livingstone at Victoria Falls in Zimbabwe and many more. She had her hands full with four children, the family dog and a husband whose work beckoned them to Malawi, Nigeria, Philippines and Australia from the comfort of Toronto. My father was a professor whose expertise was on international education and workforce development.
The phrase “there and back” has a very distinct meaning in our family. It means the journey we would take going to our “year away” destination and the journey coming home. They were full of planned and spontaneous adventures.
My three siblings and I have since moved to the US and my father passed away in 2006. My mom stayed in Toronto, CA, an easy 1.5 hour direct flight from Atlanta, Baltimore and Denver making “there and back” easy for us kids. In the last few years, my mother’s mobility and mental health began to decline and in the year before the pandemic, each sibling would take turns to fly to Toronto each month to visit our mother (she refused to relocate to the US). She would look forward to our monthly trips. That stopped in March 2020 when the US-Canadian border shutdown and she decided not to get out of bed anymore. Like so many people, the pandemic separated us from our families.
If it were not for one incredible woman, Rachel, who befriended my mother years ago, she would have been 100% alone minus hired support. Needless to say, her decline progressed and we could not get access to cross the border. June 2020, she was sent to the hospital where she was convinced the doctors were doing experiments on the patients. Her dementia had crossed over to the Holocaust and Nazi treatment of Jews and other “undesirables” (her parents escaped the Germany in 1939 and the Holocaust was a major theme throughout her life). Doctors refused to provide a letter for essential travel, so we remotely coordinated her hospital stay, including her decision to stop taking medicine and go into palliative care. Her retirement home could not care for her and still no allowance to cross the border, we remotely moved her from the hospital to a long-term care facility. Several years ago when she was diagnosed with Ataxia, she said her biggest fear is that she would be bedridden and die alone looking at the ceiling. This fear was beginning to become a reality for her. We were encouraged by the doctors and caregivers to do Facetime, but each time, the mother we knew was fading and we knew she was giving up.
On Friday, July 31, 2020, the doctor called and said my mother had been refusing food and drink and he said she had entered VSED (Voluntarily Stop Eating and Drinking) and her body was shutting down. The doctor finally agree to give me a letter which would allow me to cross the border. They couldn’t guarantee me access before the 14 day mandatory quarantine. My siblings were against this as they felt I would compromise my own health especially being a breast cancer survivor. My husband and 21 yro daughter said they support whatever decision I make. So I rented an apartment a mile from the facility for two weeks (Canadian customs required proof of quarantine stay) and put some of the resourceful lessons my mother taught me into action.
I landed in Toronto on Sunday, August 2, received a drive through COVID test. Monday afternoon, I received a rush confirmation my test was negative via email and I sent it to the long-term care facility. The nurse called to say my mom had taken a turn for the worse and it wouldn’t be long. The woman overseeing family coordination told me because I came from the US, I would still need to quarantine for the mandatory 14 days per the ministry rules. If you do the math – it takes one to three weeks to die from VSED and my mom was starting week two. This gave me zero hope if I followed the rules. The general manager was out of the office, so I called our family attorney to find out what the worst ramification could be if I snuck in to see her – up to $100k in fines and one year in jail. I decided to proceed and accept the consequences.
Tuesday morning at 8am, wearing my mask, I went to the facility pretending to be Rachel who was on the list as an essential caregiver (the only pre-requisites is being a family member or friend and proof of a negative COVID test). Made it to my my mother’s room, where she lay in her bed and was so small and barely responsive. As soon as I started to speak to her and held her hand, she responded slightly.
Two nurses came in and they knew who I was. Knowing time was short, I told my mom that I loved her and I think I am going to get kicked out but I would do everything I could to be with her. I was escorted to the lobby, shamed by the employee who manages the families and told that I needed to start my 14 day quarantine starting today and Rachel would be banned from the facility. Arguing, I was COVID negative and my mother wouldn’t last that long, she began to dial the police. Defeated, I left.
Another call to our attorney asking if I could take my mother out of the facility and bring her to the 2-bedroom apartment I was renting. He said there was a huge shortage of healthcare workers to assist. Then the general manager called me and agreed to let me back if I would wear full PPE gear – she said to come the next day at 9am for training and I would be allowed to see my mother daily. I showed up the next morning, prepared to wear the PPE gear to protect the residents, but they had me put it on before I went into my mother’s room and take off when I left the room to protect her, but she is already dying. What about the elderly residents I pass in the halls?
My mother passed away on Sunday, August 9, 2020, but some beautifully sad things happened along the way. I was able to hold the phone on Facetime while each of my siblings and their children said what they needed to say to her. I spent my 56th birthday with her. I told her we would all be fine now and it was time for her to be with her first born child Robert who died at 29 days old. My brother arranged for the cremation that she wanted. We honored her wishes for no obituary or shiva (Jewish mourning). I carried her home in an urn and as we went to the Delta Club Lounge and were upgraded to first class, I realized, this is exactly the way she loved to travel “there and back”. Her ashes were spread on the family plot in Boston by my sister in the fall, with my brothers and I on Facetime. She has travelled “there” and is free and we all have closure.
But, this story will not end here. After speaking with the woman who refused to grant me entry, she broke down and said she was assigned that role, given the ministry guidelines, told to follow them, never trained or empowered to use her situational awareness, empathy, critical thinking and problem solving skills to find work arounds for situations like this one. Our family attorney says he lost 42 clients this past year, over two-thirds of them died alone. I ask you, how many people do you know who died alone for this same reason? I am convinced if this woman and others assigned to this difficult task were empowered to use their power skills, the number of lonely deaths would be significantly lower.
Mom, happy Mother’s Day! I miss you dearly, but I thank you for teaching me essentials skills and to be resourceful, tenacious and an original thinker.