My 91-year-old loved one tested positive for COVID-19. How could this be? She is not allowed to leave the facility without assistance, we are not allowed in. So how was this inflicted upon her? Here let me answer that-the comings and goings of staff.
Until recently, I had not visited my loved one in her room at the skilled facility since March 2019. When there was not a COVID outbreak in the facility, I was allowed to see her during a “lobby visit” for 30 minutes, sitting six feet apart, masked up and supervised by a staff member. When she tested positive for COVID, I could only see her through a window while I stood outside in the elements. We did our best to speak to each other through a window. I observed her in silence. She was weak, she had lost weight. I could see it in her face and neck. She could hardly hold her head up. Her eyes displayed weakness yet fighting to live. I found out later that her roommate also tested positive. Her roommate did not make it. I have not spoken of this with my loved one. She tested positive for COVID in November 2019. Thank God through much prayer and faith, she fully recovered. She says “I’m a strong bird. My God is a good God.” I am so grateful. She says this often.
COVID has taken its toll not only on those who tested positive but the social isolation from those loved ones whose touch they are familiar. The toll on the facility staff left behind to carry the load due to the mass exodus of other staff members, staff who are exhausted mentally and physically, the onboarding of new staff who are unfamiliar with the nuisances of the residents and weary leadership and in some cases unseasoned long term care facility leaders just trying to survive “this.”
Some may think that those with dementia have no awareness of chaos but this is not true. It depends on the type of dementia. My loved one has mild-moderate dementia which, during the COVID highjacking, has heightened her sensitivity to the chaos around her. Even if the words are not in her lexicon to describe the specifics, she is aware. On top of that, having to wear the mask and staff donning masks plus face shields at all times, further supports distancing and isolation and can incite fear in those with dementia. Can you imagine how cloudy this might be cognitively?
So, let’s move forward. I recently encountered some information from a subject matter expert. It was about a guidance that was released from our state in September of 2020. It is called “Compassionate Care” visits:
The Centers for Medicare and Medicaid Services has developed guidance that provides some examples of situations when compassionate care visits should be permitted. These include:
• A resident who is at the end of life.
• A resident, who was living with their family before recently being admitted to a nursing home, is struggling with the change in environment and lack of physical family support.
• A resident who is grieving after a friend or family member recently passed away.
• A resident who needs cueing and encouragement with eating or drinking, previously provided by family and/or caregiver(s), is experiencing weight loss or dehydration.
• A resident, who used to talk and interact with others, is experiencing emotional distress, seldom speaking, or crying more frequently (when the resident had rarely cried in the past).
Personal contact IS allowed, though limited, under “Compassionate Care” guidance.
So where am I going with this? Why did I not know about this? I am thinking of the missed opportunities over the past year to hug my loved one, brush her hair, paint her fingernails, watch TV with her, laugh with her and so much more. I began to receive calls from staff inviting me to bring in her favorite foods as her weight loss is now significant (20 pound loss) in a short period of time. I was told it could not be prepared at home but purchased commercially (restaurant). That did not make sense because staff are allowed to come and go daily but… I just wanted to get food to her. There was no mention that because she now has recovered from COVID, I could also visit her under Compassionate Care with restrictions as she meets at least one of the criteria. No mention… at all.
Upon receipt of the written guidance on Compassionate Care visits, I made a call to the facility director with document in hand. The facility director gave me gibberish concerning her lack of clarity initially and only “recently was this clarity provided.” Basically, they chose to only honor the one bullet concerning “end of life.” The document was very clear to me at first glance. The guidance was released in September 2020. The only question I had for her at that moment was, “What day this week might I visit my loved one for a Compassionate Care visit?” It was authorized. When I walked through the doorway of my loved one’s room, my loved one lit up like a Christmas tree, she was ecstatic! So was I. She kept calling my name over and over.
For the sake of compassion, pass this information forward to those who have experienced situations such as this – of not being fully informed of options. There is guidance in place to connect with loved ones in addition to virtual and/or phone.
Wait, there’s more… I was then told after my visit when I attempted to schedule the next visit, “Oh, that is a one-time thing.” Well, that was certainly a red flag. Again, misinformation. It breaks my heart to even think of the number of folks who have been misinformed and prevented from spending time with their loved ones because the facility has opted to not fully inform loved ones of the options available.
If you get pushback after your request, reach out to your Ombudsman for the facility. Every skilled and assisted living facility has an Ombudsman assigned. Every one of them. They will intervene as necessary. Land of Sky Asheville NC is the source to reach the assigned Ombudsman.
I must say, I understand the increased risk that facilities must consider by allowing these visits, but I also understand that a dynamic partnership ought to be nurtured between the facility and loved ones instead of the facility viewing the loved ones as intruders. Let’s not forget to treat others as you would want to be treated during a similar situation. This takes relooking at the power imbalance and placing an emphasis on compassion- Yes, Compassionate Care.
This is the opinion of Sharon West, a registered nurse in Asheville. Contact her at sharonkellywest@gmail.com.
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