Mental Health

The turbulent experience of caring for a parent during the COVID-19 pandemic

Patty Leinemann

Reprinted from the COVID-19 issue of Visions Journal, 16 (2), pp. 28-30

It hit hard. It was the middle of the night, six weeks after the March 2020 lockdown. I was in bed, staring at the ceiling with that vacant look that people have when lost in thought. Tears trickled along my crow’s feet to my temples, pausing before slithering to the jaw. Their wetness continued to roll under my ears to rest in the baby hairs at the nape of my neck. I forced myself to be still. I waited. Waited for those pooling tears to expand enough to release and drip that one centimetre onto my pillow. It was a surreal moment as I realized that this is happening to me.

Waiting. Waiting with immense anxiety for the next wave ... of further changes to adapt to, all the unknowns, the endless whirlpool of emotions, the dreaded second wave of COVID-19.

Earlier that evening, I had received an update about the next round of modifications at my father's long-term care facility, which is within walking distance from the house here in BC's Interior. I got the most unsettling feeling. Would I ever hug or help my father again? Would he ever be allowed to be a part of the mainstream society that we had included him in the six years he has lived there? Would he die alone? My mind and heart were having a relentless tug-of-war that night. Forget falling asleep. I was rattled.

I'm exhausted.

With the countless official and unofficial revisions, remembering the sequence of each implementation is murky now. In mid-July, the new orders were 12 months of supervised, masked, social-distanced visits, at only limited times in the week, by only one allocated person per family in a bare room with tables between resident and visitor. I visualized an interrogation room. How does a large family like ours choose who the one visitor will be? Currently, the decisions are made by my sister and me; however, every week we postpone deciding who will be the chosen one until we absolutely have to in the hopes that rules will change once again. Maybe we could both be included for alternating visits. In the meantime, we've agreed to see our father from outside a chain-link fence—which, as one can imagine, is marred with its own litany of problems.

Helplessness, frustration, anger, guilt, jealousy, depression, lack of motivation—you name it, I'm experiencing it. Getting balanced after each emotional shift is often tested by another unexpected wipeout. Having to confront my father's significant weight loss and witness his increased flailing and confusion due to Parkinson's, all from 10 feet behind a chain-link fence, is an affront to the senses. I can't hear my father over the landscaper's equipment. Yelling to be heard is not my style. Seeing the care aides pat my dad’s shoulder triggers envy rather than gratitude. His lack of interest and his confusion as he attempts our yoga routine in his wheelchair challenges my own well-practised yoga breathing.

I swallow the heaviness in my throat as I trudge home, eat a dinner of potato chips, chocolate and ice cream—with a heap of fresh strawberries from the garden to suppress some of the guilt. Ha! And I wonder why my clothes are all tight. The reoccurring rant that I subject myself to—that I haven't tried hard enough to move Dad home—is tamed with another wasted night of unfulfilling movies. With my empathetic, too-emotional, worrying OCD tendencies, I cannot find a routine to calm the nerves.

My wave of anxiety was reignited when we were told that the director and the assistant director of my father's facility were both leaving their positions at the end of July. Staff were weary. Indoor visits were still limited to one designated family member, one 45-minute visit per week. Jeez. Forty-five minutes in a 168-hour week! We continued to meet Dad outside to get him out of the building, and because we noticed Dad's positive reactions to the sound and movement of planes, birds and pedestrians.

After the first two months of the pandemic, I kept thinking I couldn't be the only one struggling with these feelings. This experience of unknowing and unseeing must be common for families with a loved one in long-term care. At the best of times, we must blindly trust what happens inside that building. We wait for personal updates, but the emails we receive from the facility contain COVID-19 reports, logistics and new safety protocols. This is important, of course, but what about the personal touch?

I used to visit my father up to six days per week. Wrestling with my need for order and cleanliness, and worrying about the effects of change in Parkinson's patients, I would tidy, reorganize, restock supplies and encourage him through his yoga stretches. I would wash his face, hands and ears, I would fix his trimmed nails, soak his feet. I would hunt for things missing from his room—or whatever else welcomed me at his doorway—hoping I gave my dad some ease with his daily trials. In hindsight, some of those days were challenging... but the challenges then seem so trivial now.

I am grateful my father receives full-time professional care. However, contemplating the many seniors living in isolation at the end of their lives has always bothered me. With rising case counts, Dr. Bonnie Henry's advice to "be calm" is hard to accept when I think about my father spending more time alone. Increased COVID-19 numbers raise fears: planned visits could be cancelled. I have become extremely cautious; I postpone seeing friends, stay home and watch as other people's actions affect my life.

Updates about our loved ones is a key link for families on the outside. The importance of the personal update hit home when I received a text from an event programmer about how my father is doing on the inside. My relief was profound. All from reading two sentences! I realized I must continue to be my own advocate by writing and phoning for updates about my father. I need that comfort to avoid being pulled under—for my own mental health and well-being.

I should be more thankful that I am managing, able to live in BC, close to my father's care facility. I am fortunate to belong to a community of many individuals being creative to help make a difference. For example, Family Caregivers of BC hosts online support meetings for families with a loved one who requires extensive or long-term care. I participated in some of these sessions and joined a supportive social media group, too. But many people's stories trouble me; I realize that, despite my personal distress every day, we are some of the lucky ones in this experience.

Nevertheless, I remain unsettled. I know every person and family is processing this situation differently. It may relieve some families to not visit during this time, or they may not need or want to know as much as I do. Am I overacting? Am I asking for too many answers from our health care system that is scrambling for its own successful solutions? What can I do to help myself in this situation? I sense the answer is patience and hope. Yet all this waiting and unknowing perpetuates more angst.

"Be calm. Be kind. Be safe." I am trying to let go, to accept. I am working on gratitude without guilt—and every other optimistic approach people encourage me to try. But I am challenged practising Dr. Henry's words. The reality is that this situation is not getting better anytime soon. I just can't shake this weight that accumulates on my head, my shoulders, my gut, my heart. Every time I think about how I will face the next wave—of anxiety or of the pandemic itself—my stomach does another backflip. I slowly breathe into my back ribs.

I know very little about surfing. Too bad. To be in the water, catching and riding those waves—rather than being tossed around in the surf—would be a welcome break for this body and mind. I just read an article about learning to surf, and I discovered that sitting—before standing—encourages the student to garner balance and patience. Once you're comfortable with the sway of the ocean, then you're ready for the best surfing waves.

I'm fatigued by my ceaseless paddling. I'd better relax, though, enjoy the view, and get used to sitting for a lot longer.

Editor's update: Six months and 11 days after COVID-19 restrictions were first put in place at the long-term care facility, Patty was shocked and thrilled when the facility called to tell her she had been given "essential" status. This was a result of an exemption application submitted to Interior Health for approval, supported by the facility, her father’s physician and the family's continuous advocacy. She is now able to enter the facility at a specific time each day and go directly to her father’s room. They can hug each other, hold hands and adjust to her father's increased needs.