The last time my mother was oriented enough to speak to me, she simply said “love you”. That was by telephone about a month before she died. I had not seen her for two months due to COVID-19 restrictions at her assisted living facility. We were not informed, until after we called and she did not answer her phone, that she had been moved to the COVID-19 isolation unit. The last time my daughter talked to mom, she was more lucid and said that she was “a prisoner in this awful place” and “get me out of here”. There is nothing more heart wrenching than knowing someone you love and to whom you spoke to almost daily now felt alone and imprisoned.
Unfortunately, because mom had a positive Covid 19 test, she was in isolation inside the assisted living facility, and was even not allowed to speak to us by phone because the facility did not have a phone that would get reception in that area of the old building. One nurse was misinformed and denied contact by phone because he said, “it is policy due to COVID”. Wrong, wrong, wrong. They had no manager, no head nurse, and the corporate manager was unreachable. It took me 6 days to get a corporate head to call me back after leaving a message threatening a lawsuit. I managed to get through to mom after one week by taking my own cell phone in and passing it to an aide who held the phone for her to speak to us outside on another cell. It was a short and confused few words as she was by then so very weak and not eating.
There has to be a better way. The communication and understanding of the CDC guidelines and the facility policies were not carried out by the agency staff covering the understaffed assisted living facility. Long before the shut down of this facility for safety reasons during COVID, mom had started to complain of bad food, poor staffing, no response to her emergency call light, and things that were broken or not working in the facility. Before the shut-down, family members were going in to clean up things in her room because they had been without a housekeeper for a year and nurse aides were trying to keep up with resident care and facility cleaning. It was a disaster but there were no affordable local options for our mother because she had too much money to be on medicaid and too little to afford long term costs of 80,000 dollars or more per year at a better facility. It would not have mattered if we had wanted to get her out during COVID because no one was allowing transfers between facilities with active cases.
Long term health costs are ridiculous, and the staffing is still as low as the state standards allow so more profits are pocketed by the facility corporate owners. I know this not only as a resident family member but as a retired nurse with 16 years in long term care. We were always understaffed and overworked. Added problems were that most doctors did not want to do much care of residents in LTC because it paid them nothing extra for visits to the facilities. Facility physicians and nurse practitioners are not generally the cream of the crop because specialists and really good GP’s are working at bigger hospitals or practices where they make more money. Hey, they have bills to pay, so I get it. However, our elders are generally getting less aggressive medical attention because “they are old”. At least, this was my experience. So, even if the family dearly loves the resident, if they cannot get good medical care, and cannot get out of the facility, they are stuck with having nurses call and get orders from a provider who possibly laid eyes on the patient three times a year for five minutes, and is assuming from the little bits of info from nursing how to treat their symptoms.
In the eyes of COVID 19 statistics, my mother became a number on the list dead from COVID two weeks after her admission into a Hospice facility. She went from the long term care facility to the ER by our demand because she fell. If not for that we never could have broken her out of that facility because she had COVID and was still in quarantine. More than once she was denied her basic civil rights, dignity, and pursuit of happiness by contact with her family. She didn’t really die of COVID she died because she was weak and gave up. Even at Hospice I had to go to bat to argue for early visits before she entered transition to death (24 hours before). They had stopped all visitation there due to our community increase of COVID outbreaks. She had stable but chronic kidney disease for several years, but her kidneys were quickly shutting down from damage of COVID. She tested negative before our first bedside visit. It was one week before her death that we were able to begin sitting at bedside. However, she had already stopped eating, stopped responding, didn’t open her eyes, and did not have any hand grip response (like a newborn would). She was literally gone in spirit and in body already.
How is this lack of care in a facility possible? Assisted living facilities that are private pay and not relying on medicare and medicaid for medical care payments are not under the same scrutiny as skilled facilities. While they are still supposed to meet the same standards of basic care by state law, I am here to attest that there is less active accountability. I know, I worked both. My mother, who spent her whole life loving and caring for others with no regard for herself was on the bitter end of life trapped in one of these facilities, not having been able to give her family one last hug while still able.
If not for the Hospice in-patient care facility (which was expensive and not covered by any insurance – including Medicare) we would not have even been able to be next to her before death. Quietly, in sleep she passed. Her death was marked as COVID because she had a positive. I also learned that facilities do receive more assistance from the state and federal government for listed COVID related deaths. Also, there is much confusion about cause of death documentation. If recovered with a negative test, and patient chronic illness has been complicated by the viral illness that results in death, is the death from the chronic illness (in this case kidney failure), or from the COVID virus ushering a faster death? No one had a straight answer for me. It’s easier to label it as COVID and allow facilities the extra monies they want.
Countless families in the US and their elderly loved ones have suffered this kind of end during the last 8 months. Some are getting good care, some are being sacrificed due to lack of affordable care, or due to the need of younger patients who have a better chance at survival. (War time triage strategy.) It is a shame for such a rich country that our values have become so skewed. Even dogs have rescue organizations to care for unwanted pets, why would we treat humans with any less dignity than our pets? Yet we have fewer organizations rallying behind elderly unwanted than dogs and cats. I don’t understand.
According to the New York Times, 38 % of all U.S. COVID deaths were attributed to nursing homes. Those numbers have continued to rise since that month in June 2020. I can attest that I saw nursing giving care between patients without changing gloves or washing hands before Covid restrictions stopped my visits, so I can only assume not much changed as the rate of infection in my mother’s facility kept increasing every few weeks after patients were sequestered in their private rooms for a month.
As infection rates continue to show variable increases across the states, our elderly continue to be the most vulnerable population for contraction of every communicable virus. Although some politicians and younger people consider this population an acceptable loss in the grand scheme of population losses to COVID, I consider my mother’s loss a tragedy and one I will not soon overcome.
On the other side of the care system as a family member, I have never felt so helpless and infuriated than in facing the way my mother’s last month of life unfolded. No one person had answers and even contacting five or six resulted in different information. Unknowns I get, but the plans of handling care of the elderly and their families did not have any real guidance for much of the COVID summer of 2020. For the lack of a better description of the state, federal, and local response and coordination, and excuse my vulgarity, but it has been a clusterfuck for families losing someone during COVID.
From this year of tragedy, at the very least, I pray to God that our society will take a hard look at the way we care for the elderly in the United States because of this pandemic microscope. There has to be a better way than our current long term care system.
sherrystruthtofiction 