What’s the first thing you will do when your world opens up again?
I have had so much trouble keeping clear thoughts in my head during this time. The worry, stress, anxiety, fear, sadness…it would be impossible to name all the emotions that have been moving in and out of my mind in the last two weeks. I have struggled to write, to draw, to read…things which bring me peace and calm my mind are mixed up in my head leaving me at a loss, paralyzed.
My biggest worry throughout this time has been my parents. My father was hospitalized in the beginning of February and was there for several weeks when we decided he needed to go into a home for respite care. It was a big move. My parents have been married for almost 60 years and have rarely been apart. Then, COVID 19 hits and we can’t see him. He has dementia so it is difficult to call because he often does not understand how a phone works. The other day he called the phone a shoe and my brother, Michael, figures somewhere in his mind, the memory of Get Smart was triggered.
This might be why he has so much trouble answering the phone when we call. He has forgotten how to pick it up, hang it up, dial numbers. He does not know how to use an iPhone or iPad for video calls (though many have suggested to just do that). We have had two Skype calls with the home in the last two weeks thanks to the PSW setting it up. We are all so excited to talk to him that he really can’t manage the number of people talking or the direction of the conversation. He just watches the screen. My mom plays piano for him over the call.
When we are off the phone or not in front of him, he forgets that we have reached out, that he has seen us at all. He doesn’t understand why we aren’t there at times but at other times he understands what is happening — to some degree. This is a man who was a leading paediatrician and allergist for many years. He taught fourth year medical students at the University of Toronto and won teaching awards every year. Now, he doesn’t know if the phone is a shoe or how to pick it up. People have said that dementia is a gift during this time but they have not dealt with someone they love having dementia then. It isn’t like you forget everything. You forget what has just happened. You might forget names. There is no silver lining with dementia. None. At least not that I have seen.
My mom, alone in her home, unable to take care of anyone, is losing her mind. A couple days ago she stopped at my sister, Carolyn’s house and said hello from her car. My sister’s dog jumped in the car and starting kissing my mom and for three days afterwards, my mom was okay. She laughed, smiled, sang, played piano and stopped yelling, spinning, blaming. Why? The affection from my sister’s dog was the first touch she had experienced in two weeks. Except the time she hugged me…
My daughter, Rachel, had joined me with my mother, to see my dad from a distance. We had to bring supplies for my father. When the doors opened, and my father stepped out of the elevator, my mother, having not seen him for what at that point had only been a few days, jumped up and down screaming his name and waving, “Gordie! Gordie! Gordie!” as if he was returning from war and she was on the platform waving the train in. Since going into the home my mother was visiting him twice a day.
Seeing this, her love, so youth-filled and real, took me aback. They have been together in marriage for fifty-eight years — five children, eight grandchildren, numerous trips all over the world and friends in those places too. Every Saturday night they went out, even when we had our own children when so many grandparents can’t wait to babysit, my parents had an active social life. There were times I resented this, to be honest. And when my father got sick, and his dementia became more complex, going out on a Saturday night left him isolated unable to contribute to the conversation in a loud restaurant and left my mother increasingly frustrated, longing for her old life with him. Then the incontinence became uncontrollable. He had accidents. People didn’t want to drive with them anymore and then they didn’t want to go out with them anymore. It was heartbreaking.
So her anger at how life had changed became the predominant way in which my mother expressed her love for my father. It was hard to watch. Hard to listen to. I had friends, like my mentor, Lillian and my coach, Judy, who have both lived through their own struggles with dementia. Lillian lost her husband to Lewy Body Dementia and Judy’s mother has Alzheimers. Both worked with me, supported me in the loss of my father piece by piece but also, and even more importantly, in guiding me to have patience and empathy for my mother through the profound loss she is experiencing and every emotion that goes with it — without judgement.
So in this moment, when my mom screamed with abandon and joy at seeing my father, her husband of almost 58 years, every emotion that I have held through all of this burst out my eyes and I sobbed. Unable to think in that moment, and only acting from motherly love, she wrapped her arms around me and held me. I rested there on her tiny shoulder and let the tears fall and then I realized the risk that I had put her in by indulging in my raw emotions. I quickly pulled away hoping, if I was a carrier that I didn’t somehow pass it to her through that embrace.
We said goodbye to my dad that day and have gone a few other times to visit. My mother still goes every day and stands outside the two doors which they will no longer open, in the rain, in the cold. She drops some food off for him in the basket outside, labelled for him, so he can have some home prepared food just like parents and grandparents used to do for their own children who like hot lunches outside the school. There is no time to talk. There is no way to connect through the two glass doors.
I try calling every day. It is hit and miss if he will pick up..more misses than hits. In the last two weeks he has picked up once.
Before the lockdown, I had the chance to visit him after work, alone. It was quiet. I went to his room and sat with him on the couch and he said to me, “Give me your beautiful hand.” We sat there, holding hands, and I rested my head on his shoulder and just like when I was a little girl, he began singing to me, “Heaven, I’m in heaven…” and the tears just flowed down my face. Now all I want to do is go back there, hold his hand, and allow myself to mourn the loss of him while also revelling in the love that surpasses cognition, memory and grey matter.
So someone asked on Facebook:
The answer? Hug my parents.