‘We are all in this together.’ Check.
‘We are all in the same boat.’ Uncheck.
‘We are all in the same storm, but not in the same boat.’ Check.
As of April 28th 2020, nearly 8 in 10 of coronavirus deaths (79%) in Canada occurred in long-term care (LTC) homes. For residents in LTC homes, and for their caregivers and families, there are realistic fears and heightened levels of stress and distress during this COVID-19 pandemic. One way to help deal with the stress and distress is to advocate – ask questions and expect answers from your family member’s LTC home.
The heartbreak is real
Most of us have heard or read the heartbreaking stories revolving around being unable to visit family members, and about residents dying without family members present. To complicate the grieving process even further, family members have been unable to gather with relatives and friends or have a funeral service. Grief is always difficult but it is particularly difficult during a time of physical distancing, greater isolation and absence of the usual grief rituals.
Caregivers: creative and tenacious
Caregivers have been notoriously creative and tenacious in figuring out ways to connect with family members who are institutionalized. There are signs, massive cards, and virtual lunches outside resident windows. My personal favourite is the Ohio man who visited his mom in assisted living by using his company’s bucket truck to lift him to the third floor window of her room. This brings new meaning to the expression ‘where there is a will, there is a way’!
Take family member out of LTC?
Many caregivers have wrestled with the question of whether to take their family member out of LTC and care for them in their homes. This is a completely understandable and compassionate consideration. It is also not a realistic option for the majority of caregivers. The reason why their family member is in LTC in the first place is because the care needs exceed what can usually be provided in the home. There is also uncertainty about the process for family members returning to LTC in the future.
There are almost 61% of relatives reporting that they are somewhat or very worried about the quality of care their family members are receiving in LTC and close to two-thirds (63%) think their family members are having a somewhat to very difficult time coping with COVID-19 restrictions in LTC homes, such as no contact/visits and needing to stay in their rooms.
The role of advocacy
What to do with this understandable worry? Advocate. Ideally, we should all be advocates for LTC care residents and their families. Even our Prime Minister says that Canada is “failing our parents or grandparents, our elders….” Until we face the “tough questions about how it came to this,” as Trudeau puts it, what can caregivers living this reality do for their family members right now? Caregivers often take on the role of being an advocate for themselves and the person they are caring for. If there was ever a time to advocate and ask pointed questions, it is now. The intention of the following questions is not to be confrontational. It is more about being adequately informed. You have a right to pose questions related to the health and well-being of your family member.
Questions to ask nursing home officials
- What is the LTC’s communication plan for residents and families?
- How will families be informed and kept up to date about: current health status of family member; number of COVID-19 infections and deaths (staff and residents); visitation policy and procedures; precautionary practices; infection control practices?
- What is the LTC home doing to prevent COVID-19 infections?
- What is in place for residents who share a room?
- Are staff being screened for COVID-19? How often, and when?
- Are vendors who enter LTC being tested?
- How are residents being kept safe when another resident has tested positive for the virus?
- What is the LTC home doing to help residents and family members stay connected?
- Can a regular schedule be set up to either phone or connect via video?
- Are there full staffing levels at the home at this time?
- If there are shortages, how are the needs of the residents being met? What is the plan to bring the staffing levels up to adequately meet the needs of residents?
- Do the LTC staff have all the necessary personal protective equipment (PPE) to keep themselves and residents safe?
- Do all staff wear PPE? At all times? What is the protocol for the use of PPE?
Exercising your right to ask questions, and expecting clear, direct answers is a completely reasonable position for you to take.
Contacting your local Member of Parliament
Depending on the answers to the above questions, you may want to consider contacting both your local provincial Member of Parliament (MPP) and/or local federal Member of Parliament (MP). Long-term care homes are a provincial jurisdiction, but advocating at both provincial and federal levels can help keep the issue of health, well-being and safety in LTC homes on the front burner. I am not suggesting that it isn’t currently on the front burner. The point is that MPs and MPPs are our government representatives and it can be helpful to provide your lived experiences. It moves the issue away from being a statistic to being a person and a family with a name and a face.
Using your voice is something you can do and is an important balance to feeling helpless and powerless during these pandemic times.
How have you handled a family member being in LTC during this COVID-19 pandemic?