It is almost impossible to believe how drastically everything changed with Covid-19 in March of 2020. Personally, our family was planning a huge celebration for my grandfather’s 100th birthday. I was working in home hospice as a nurse practitioner. My husband Mark was attending art therapy, church and the gym with me to continue to work to maintain his health after a brain injury in 2015. Then just like that, we were locked down.
I remember many of the people who worked in health care were afraid to care for those who were infected with Covid, which increased my exposure because I was now doing all kinds of visits for the patients on our census who had tested positive for Covid. I was doing the home health aide visits, the registered nurse visits and the nurse practitioner visits. We had minimal PPE (personal protective equipment) due to the demand and shortages. Families were kept from seeing their loved ones, so I was doing video visits with families and my work cell phone. It was a terrifying mess.
During this time, I also had to consider the risk of me bringing home the virus to my husband, who has multiple health issues and would be considered at risk for complications of Covid. I did not have the option at the time of working from home, so I did my best to be careful and prayed a lot.
Looking back on this time in my personal and professional life, I feel like I’ve learned several valuable lessons. My hope is that this experience will stay with me and help me to continue to improve my own practice, my care for Mark and my ability to provide valuable information and compassion for all patients and families I am blessed enough to care for in the future.
- Families know their loved ones best and should not be kept from them if at all possible
Watching people who have dementia, brain injuries, life-limiting illnesses being kept from their loved ones is one of the most excruciating things I have ever experienced. While I understand the initial restrictions, because we knew so little about the virus and we wanted to protect the frail and elderly, I can see we ultimately did more harm than good. Patients stopped eating, they stopped wanting to get out of bed, they often did not understand why their families stopped visiting. Many became infected despite keeping their loved one’s from them.
- People making the decisions are often not the ones who are working with patients day to day
We’ve all seen the footage of nurses trying to allow family members to say good-bye to a dying loved one over an iPad or phone call. This was not only damaging to the families and patients, but also to the staff that had to shoulder this responsibility. For administrative staff, things are often black and white, but individuals are at the core of the healthcare system. To dismiss the importance of the intimacy of the end of life is a mistake and that moment can never be recreated. Finding ways of facilitating visitation for these individuals should always be a priority and unfortunately it was not.
- Depending on the healthcare system to manage your health or the health of your loved one is a grave mistake
During 2020, Mark was unable to see his general physician in person due to my job. So because I was working with Covid patients and Mark lived with me, he was not able to go to the clinic for his yearly physical. I was also denied access to my own physicians, including not being able to have regular screening, such as a mammogram. I discussed with the particular health care entity and offices that I was tested for Covid twice weekly, but Mark and I were still denied access to our providers or care. This was the biggest disappointment to me. While so many healthcare agencies touted the front line workers as heroes, we were not allowed to receive care for ourselves. Crazy, right?
- Without support, family caregivers who are caring for loved ones alone at home are at great risk
During this time, I did many home visits to hospice patients and families as well as visiting those in long-term care facilities. The thing that is often forgotten is those individuals who are caring for a loved one at home do not get to clock out. There is no lunch break, no relief in the middle of the night, they are IT, 24/7. So during these last 2 years, I have seen what happens to both the physical and mental health of those caring for a loved one at home and it is not good. They are at great risk for increased anxiety, depression (which is exacerbated by things like news, social media, etc) , increased blood pressure, memory loss, digestive issues, just to name a few.
While I know that many decisions that were made at the start of the pandemic were out of necessity due to the unknown impact of the virus, I also have the ability to understand that for many people, isolating and withdrawing from their caregiver responsibilities is not a reasonable or safe option, if their loved one is in a long-term care facility, in the hospital or at home.
I know that mistakes were made and lessons were learned. I also know that my own grandfather died of Covid, after his 100th birthday, despite being isolated in his assisted living facility. So no one saved him and knowing my grandfather as well as I did, I know he would have preferred to have contracted Covid at a big party, surrounded by those he loved.