CAREGIVING DURING COVID-19

Donnas Story
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Nicholas as seen through the window of his medical group home. 

       Caregiving during Covid19 has put a huge, extra strain on caregivers. It's hard enough walking the journey of illness or disability with someone you care deeply about, but the pandemic has amplified our pain by separating us from our loved ones in hospital or long term care. We're forced to wait in the parking lot or outside the window while our loved ones try to manage finding their way down unfamiliar halls to a clinic appointment. If we're lucky, the physician or nurse will place a call to enable the caregiver to join in a consultation meeting over the phone. Sometimes, all we want is to speak to a loved one or a nurse - especially if a loved one is an inpatient and we have urgent questions or information to deliver. Maybe just need or want to say "I love you." Performing our normal roles of navigator, comforter, keeper of health histories, reporter of symptoms - we are attempting to carry these out from outside, across what feels like a wide distance. It's as if we are knocking on the door, softly at first (because we know people inside are so busy fighting an invisible enemy). But then, worry grows and grows until weeping, we abandon all social conventions and bang on the door till our knuckles bleed. 

 

I know this feeling. Our son Nicholas lives in a small (wonderful) medical group home. Until recently, we could visit only through triple pane windows and then a little later, outdoors with a plexiglass sheet between us. Just over two weeks ago, rules were relaxed to enable indoor visits (with masks) by designated family members or best friends. That privilege has not extended to me attending important clinic appointments with my husband. I've learned first-hand what it's like to help, but not help - to be shut out of my natural caring role for my spouse. We've been married for 43 years and it drives me to distraction not being able to support him in person the way I feel that I need to.

 

The call from family members to be labelled 'essential partners in care' during Covid zero visitor policies has been heard in some parts. Last week, an Ontario private member's bill called the #MoreThanAVisitor Act passed the second reading. If passed in provincial parliament, all Ontario patients in hospitals and long term care homes will have the right to designate one or more 'essential partners in care' who will be considered not as visitors, but as part of the care team.

 

In the US, many states allow designated family members at the bedside of loved ones in long term care. Here's a handy interactive map showing whether states enable family presence in hospitals and long term care. 

 

Family caregivers have led the charge to be rebranded from 'visitors' to 'essential partners'. The work we do to support the life and wellbeing of ill, elderly or frail loved ones may have been invisible before, but without our labours of love during this pandemic, patient outcomes have proven to be far worse. So now, finally, the realization is dawning on policymakers that patients need their families and front-line staff require the second set of hands that come with our presence. It's about time.

CLICK HERE to read more about Donnas Story
Karens Story
80th birthday celebration

Karen and her mother at her 80th birthday celebration.

My 80-year-old mother, who had moderate stage dementia, was admitted to hospital after a broken hip, which required surgery to fix. At the time, this hospital also had a no visitors policy because of the COVID-19 pandemic. After surgery, her cognitive functioning declined rapidly, which is not uncommon for people with dementia who are hospitalized. However, Mom could still communicate. But in this cognitive condition, Mom did not understand what was happening to her. She was scared and confused, her physical and emotional needs were similar to a young child in the hospital system. While cared for by busy professional staff, Mom didn’t have anyone to remind her of meaningful parts of her life, to bring her cognitively anywhere near her pre-surgery baseline. The hospital defends the strict no-visitor policy, and describes how families can have phone calls and video chats with their family members. However, our experience was that in the 38 days before we were allowed to see Mom, staff could only arrange a single phone call for me, as the hospital didn’t have phones available. The hospital staff did set up a number of FaceTime calls, however my mother, with her dementia, didn’t understand the concept of a video chat on an iPad. For example, on one occasion when Mom saw me on the display, she said to the nurse, “that is my daughter. Would you please have her give me a call because there are things I need to talk to her about”. Mom couldn’t understand that this was the call and our chance to talk. Mom was not comforted by video chats.

 

I had reached out multiple times to the hospital patient relations department, the clinical manager and others in order to ask that I have an exception to their policy so my mother could have the bedside support she desperately needed. There was much back and forth between our family and the hospital. At one point the hospital called and recommended I hire a sitter, if we could afford the $30/hour agency fee, or my mother would potentially be restrained. I did not understand why it was acceptable that a stranger may sit at my mothers bedside, yet I may not.

 

Without a change in policy, my mother passed away at the hospital nearly six weeks after admission. My brother and I were only allowed to see her 2 days before her death. By this time, she was in a state of low-consciousness and she was unable to communicate with us.

 

Hospital patients with moderate and severe dementia are receiving inequitable care with the strict no-visitor, no exceptions policy. The notion that they may only see a family caregiver at the very end of their life is cruel and in humane. 

 

The day after Mom died, the Ontario government recommended hospitals allow visitors again. It has been nearly a week and the Hospital’s website still says no visitors except “under compassionate and equitable basis”. In my mother’s experience, this exception came too late and she did not have the comfort and security that could have helped her recover. I only hope that by sharing this nightmare, others may have a better experience.

Maggies Story
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My 98 year old grandfather lives in a retirement community. He has been there for over 10 years. For the most part he’s loved it and thrived there. He was able to have visitors come and go as he pleased, join him for meals in the dining room and have a coffee on his patio. We are fortunate that my grandpa is in good health. However, he suffers from macular degeneration which has gotten worse over the last few years. Currently, he has very little vision in either eye. He relies on his memory and his cane to move around his apartment. My parents and my uncle have been his primary caregiver while he has been in the residence. They bring him whatever he needs or asks for. Most often simple things that make his day bright - like a Tim Hortons coffee and 2 timbits (one for the next day). He also relies on them to bring him things he needs day to day. 

Maggies Grandfather with his Great Granddaughter at his nursing home. 

Once COVID hit his entire residence went into lockdown. Visitors were not allowed in. My dad and uncle couldn’t see their dad. He had no one to bring him the things he looked forward to – or the things he needed. A few examples I can share. He needed a new package of glue for his dentures. He had to go a week without the denture glue so he wasn’t able to properly chew his food. His alarm clock – which notifies him when to go for meals ran out of batteries. He missed meal times. His hearing aids also ran out of batteries so he couldn’t hear his phone ring when anyone called to check on him. These simple things could have easily been prevented if we were able to visit him.  He also enjoys passing the time with his audio books – he wasn’t able to get any new ones.

 

My grandpa went from having someone come and see him everyday to no one. He was all alone. Once the visitor restrictions were eased, anyone wanting to go for a visit had to have a COVID test every 14 days. Additionally, he was only allowed 1 visitor a week. This was extremely hard on everyone. Although they have loosened the restrictions, visits are now by appointment only. You have to watch 4 videos on how to put a mask on if you want to come. This is not okay. It should not be this difficult to go see someone who needs you. #notjustavisitor