Out of Sight
Monitored patio visits with maximum social distancing have taken the luster out of the simple words – I love you. Those separated from their loved ones in health care facilities know firsthand, the torment of being unable to hold a hand, the absence of a simple kiss or hug, and the inability to fully share compassion. Collective moments of innocence are gone. Like a novel, these wonderful lives in their final chapters, have had the book stripped from their hands, the characters replaced and been told another author of unknown style will complete their life story.
Particularly acute for myself, the personal sorrow of being physically prohibited from my husband Frank’s bedside, I know I must check my feelings. The constant sting of desire to feel the warmth of his body is but a drop in the bucket compared to the masses forcefully undergoing estrangements. I must suck it up, because after all, these measures are for the protection of the vulnerable.
Finding some comfort in Facetime, solely because I can tell Frank hears my voice, the patio visits are not so much. On hospice, rendered mute by his disease, his eyes almost permanently closed, knowing he needs more comfort than words can deliver, I am constantly told “stay back.” I cannot touch my husband. Meanwhile, the news reels of Dr. Fauci refusing to condemn protests, while he tells us attending church services, sitting ten to twelve feet away from other congregates, is the looming danger for us all. None of this makes sense.
Counting my blessings, I know how fortunate we are to have Frank’s continuum of care, in one of the finest skilled nursing facilities available. Even though we had to experience inferior before we landed this care, their controlled measures in normal circumstances, gives me peace of mind in this time of uncertainty. But I am concerned for those not as lucky.
Personally, I feel the majority of facilities take this virus quite seriously. However, seeing Facebook posts showing time-lapse pictures of nursing home residents in obvious decline, my concern is troubling. These people don’t have Coronavirus, but the evidence of mental toil is more than apparent. It’s clear, they are dying of loneliness – rapidly. Nonetheless, loved ones, patient advocates, ombudsmen, and hospice workers are deemed as the greatest potential threat of virus spread and denied access. No one is represented by a third set of eyes on behalf of the well-being of the so-called vulnerable.
Love can do anything. Alas, I took it upon myself to isolate for seven weeks within my home in the hope my purity would gain me access to see my husband. It did not matter. I am the threat, even though I watch and continue to observe potential breach as employees, coming and going, changing shifts, basically living their own lives outside of the facility are considered safe by a questionnaire and temperature check. This goes on everywhere. Unrestricted with anything but travel, these employees have more active lives than myself. On behalf of a contagion considered so vile, who could possibly make sense of these selective limitations?
Who is making the rules anyway? It is not the nursing homes. It is the CDC, NIH, CMS, KDHE and now my own county authorities, setting guidelines with no concern for collateral damage. Their hands are at the controls, pushing the buttons and making decisions of not only how one is to live or die, but restricting the one thing no one would choose to live without – voluntary relationships.
Death comes for the vulnerable in spite of their efforts. Encompassing more than those who have unexpectedly given up the will to live a life without the touch of a loved one, individuals on the outside of facilities are also dying from the despair of broken hearts. The casualties of these lockdowns are rising in mass, mainly manifested by separations.
Covid-19 is real. I do not doubt the fact it has been a real disease, causing death, illness, but above all, the unprecedented fear of mortality. Honestly, it is probably the first time many individuals have had to ponder the subject. Everyone is so busy fearing for themselves, we don’t even notice the wool being layered upon our eyes.
Patient advocacy is not a foreign subject to me. My husband encouraged me to see what others are missing. He taught me that the strength of an organization is only as healthy as its’ weakest link, so I have carried that forward with my advocacy for health care, Alzheimer’s victims, their families and so on. With the happenings of current situations, trying to decipher information, analyze motives and reach to create a positive, I often feel like I’m trying to gather ping pong balls in a hurricane.
As the months of paralyzed process have dragged on, patience no longer seems to be a virtue.
Following orders, the protocol to keep and add ridiculous procedures is now starting to resound in my ears as something like this – “We have to extend any changes another 14 days, because the sister-in-law of a second cousin tested positive!”
My nature is to find solutions, help situations and fight for the disenfranchised. There are ways to combat the disease and protect the vulnerable. But when something shows promise, the proven procedures are vilified. Award winning doctors are sanctioned. Now we are expected to bow to numbers of non-symptomatic positive cases. At some point, we are going to have to give the accolades to the facilities that have had cases with full recoveries, rather than zero cases. It is a virus, treat it with the means available.
Nonetheless, this lockout of loved ones from all health care facilities leaves me to ponder ‘what is really going on?’ My thoughts keep landing on the same word - conditioning. A word that begets raised eyebrows of puzzled expressions, if this is just the tip of the iceberg, I have a nauseous feeling we are about to meet the ugly rock under the sea, face to face.
Even in the best of care homes, where there was active participation with window and patio visits, I have questioned some administrators if the intensity has diminished with the passage of time. “Oh absolutely. Most have come to an understanding that while this is uncomfortable, they are going to have to wait until it is safe. You know, this is all about protecting our most vulnerable.” But is it? When something goes away, it is natural to let go of that we do not hold. For what is not an active part of our life, we become easily swayed by justified reasons for why we cannot participate. We are becoming accustomed to the disconnection.
Taking our involvement in the health care of family members out of hospitals, nursing homes and assisted living centers is not something that could have been done without emergency cause. And then the perfect storm. We are supposed to sit idly by and accept love and support no longer have a place in health care decisions when life hangs in the balance. The nurses, staff and presiding doctors may not agree, but unfollowed orders from offices of high command are now reviewed as a potential threat to their livelihood.
Ask any country with universal health care about these practices. Decisions of quality of life are not made in the presence of family. They are made based upon investment criteria, by appointed officials. Out of sight, out of mind was a critical tool of control in WWII. Can you begin to recognize the danger posed by governmental authorities regulating health care? Are we being conditioned to close our eyes, concede to outside opinions regarding quality of life and let our loved ones pass without a voice in the matter?
It is time we stand up and fight this situation that can so easily become standard protocol. Think about no representation within the walls of our hospitals. So many have already had to drop off fathers, mothers, sisters and sons at the front door for surgery. Don’t let this become the new normal. Be aware of each new practice that manifests into another new excuse for exclusion.
In Luke 22, 45-46 – Then He rose from prayer and came to His disciples, only to find them asleep, exhausted with grief. He said to them, “Why are you sleeping? Wake up, and pray that you may not be subjected to the trial.”
In the last five months, evidence is overwhelming that we are no longer ankle or knee deep in trials against the respect for life. We are now waist deep and unless we begin to speak out and fight against these atrocities being forced upon us, exhaustion of grief will become a regret, reminding us of what we could have done.