After writing my novel Sarah’s Secret, inspired by the lives of my paternal grandparents, I recently decided to delve into a treasure trove of old family letters. I found several packets and files of letters that my mother left me. Members on the maternal side of my family had exchanged letters during different eras. I hoped to find a kernel that would spark my interest in order to write a short story. I needed distraction during the COVID-19 pandemic which was restricting me at home.
The Letters Between 4 Sisters
Several of these letters may yet contribute to an interesting story. But one series of letters exchanged among my mother and her three sisters in the early 1950s touched me. The four sisters lived in four different states, all but one of them long distance from my grandparents’ home. My grandparents stubbornly refused to move to be near any of them. The sisters were all employed and raising families of their own. A flurry of letters exchanged over a few years reflects the challenges of addressing and resolving care needed for “aging parents” from a distance. These letters began shortly after my grandparents agreed they could no longer manage in their own home. They reluctantly moved from their home into a “nursing home,” the only option of long-term care for the elderly at that time within miles of their residence.
American Elders Suffer Under COVID-19
Through the angst, frustration, and sadness in these letters, I connected emotionally to the plight of the elderly and their families during the COVID-19 pandemic. During the pandemic loved ones in their final years have been locked away and isolated, unable to see, hug, or be with their families. Thus they were not only very sick, but also frightened and lonely. In the first nine months of the pandemic more residents of long-term care facilities died in the United States than were lost in the Vietnam and Korean wars combined. Residents in long-term care facilities are just 1% of the US population. Yet they made up 43% of the COVID-19 deaths through June 2020. Experts believe those numbers haven’t changed much since then (AARP). Along with news of mounting cases and deaths we have heard also about insufficient staffing and lack of quality care in residential care facilities.
Grandparents Neglected in Care Home
The concerns about staffing and quality care are at the heart of the frustrations in the sisters’ letters. The concerns began with complaints about the quality and size of the meals without vegetables and fruit and over-cooked meat. My grandfather was not getting enough to eat.
Without programs of education or entertainment to keep her occupied, my grandmother began to complain. Staff didn’t like her complaints so they stopped coming into their room. Grandma wasn’t walked to the restroom when she needed. Later when my grandfather became bedridden, he developed painful bed sores because he wasn’t turned often enough. Grandma suffered from Parkinson’s disease, she began to refuse to eat, and with neglect and with lack of staff attention she developed increased stress. The sisters searched for available mental health care, but couldn’t find services available to diagnose or treat her. They ultimately hired a family friend to visit my grandparents at least once a week. The friend not only served as a companion but also to served as an advocate to ensure they got the care and service they needed.
Present State of Elder Care
The current pandemic crisis reveals fundamental flaws in how we care for our parents, grandparents and older loved ones today. It impacts all of us. It is especially personal for those of us currently considered seniors and elderly. Many of us live independently and are, like myself, healthy and active now. But a momentary stumble on the sidewalk, resulting in a broken hip; a major heart attack or an unexpected stroke could result in any of us needing to be hospitalized. And then we would end up in a nursing home for recovery.
High Death Rate for Nursing Home Residents and Mistakes Made
What I read in my family letters about the concerns my mother and her sisters expressed about the nursing home for their parents, at the same time as the pandemic terrible news of COVID-19 cases and deaths in nursing homes, prompted me to search for more information about the nursing home industry. It would be easy to lay the blame for the high percentage of deaths among residents of long-term care facilities during the pandemic on the nursing home industry. But research conducted by AARP suggests it is more complex. AARP spoke to dozens of experts from scientists, researchers, historians, doctors, nursing home staff and many others. The research revealed mistakes, large and small at all levels from the federal government, states, local health departments and individual nursing homes. All have contributed to this high percentage of COVID-19 deaths.
Systemic, Structural Problems in Long-Term Care
It begins in the 1950s when outdated laws led to hospital-like settings for most nursing homes. This is exactly like the nursing home my mother and her siblings found for their elderly parents. As Eric Carlson, from Justice in Aging testified before Congress, “If you are living in a world with potential for pandemic, which we are, it seems like a bad practice to put 150 people in their 80’s together in tight quarters, two to a room, sleeping 4 feet away from each other. That is about the worst thing you can do.”
Laws in the 1960s ultimately made nursing homes reliant on government funding. Elder care is expensive and with few alternatives to fund such care, nursing homes end up depending on Medicaid funding sources. The problems is that there is not enough Medicaid funding to pay for long term care and Medicare does not cover it. Medicaid rules are inflexible and do not pay for assistance to allow seniors to stay in their own homes. This forces many elderly to turn to Medicaid to cover the high cost because they have no other options.
Unsustainable Business Model in the Industry
Even before the pandemic, the current business model for nursing homes was failing. For every $100 taken in, nursing homes spent $103. Many raise questions about the for-profit model for nursing homes which siphons off income to cover profit and real estate debt incurred in purchasing the nursing home. This results often to lower staffing levels and lower quality of care than seniors need.
Despite this flawed system of caring for our elderly, many lives could have been saved. The state and federal officials needed to act quickly and prioritize nursing homes in the early days of the pandemic. But, the single greatest error, as AARP reports “was the failure to provide early and vast access” to testing for both residents and the staff of nursing homes.
Looking Ahead to the Long-Term Care Gap
It’s now almost 70 years later. I wish there was significant improvement in the quality of care in nursing homes than there was in the 1950s for my grandparents. As AARP points out, there is no quick fix to improve the care of our elderly in long-term care facilities. But the baby boomer bulge is aging (now in their 60’s and 70’s). Hence the need for beds in long-term care facilities increases. Are we going to demand a system that offers more options? One that assists seniors to stay in their homes, covers middle and low-income seniors and provides high quality care? Or, will programs to support residential care be under-funded? Will we continue to neglect our senior citizens and warehouse them in environments without quality care?
One Reply to “How Do We Care For Our Elderly?”
I really appreciated your insightful blog on “How Do We Care For Our Elderly?” This is a topic that is near and dear to me in my years working in Adult Day Health Care. You brought to light the intersection of COVID in a system of care that has been inadequate and floundering for years. In fact, in California, many nursing homes have closed in the last 15 years. As you point out, because they are not profitable. I don’t know if you were ever able to tour the old Laguna Honda facilities adjacent to the shiny new one, but you would have seen a perfect example of the open wards and asylum-like setting. I swear I could still hear the patients moaning.
It was helpful to put in perspective how much loss was suffered in nursing homes, especially in the first months of the pandemic when testing was so slow and often non-existent. The skilled nursing facility next to my mom’s assisted living quarters in Woodland lost 25 patients and 12 staff in those first months. It reminded me of the AIDS epidemic. What was so scary was the isolation elders suffered just to keep them safe-no visits from loved ones or any social engagement for 6+months. My mom really hated taking all of her meals in her room. It felt like a prison. As with her cognition decline she really didn’t understand what was going on. And the sad thing is, it was hard to explain how/when it was going to get better. Time ceased to mean anything to her. I wondered if I would see her again because at 92 with all medical issues, COVID would be her end. I tried to call her every day, just to be a lifeline from the outside. And there wasn’t a whole lot of discourse, but I was grateful that my mother was still on the planet to be called.
Thankfully she did survive, and returning to means back in the dining room with social distancing and limited activities. I can visit pre-arranged for limited time in a private room and I also take her to her doctor appts. My sister who lives 30 minutes away can visit more often. Still, it’s a heck of a last chapter of a life.
The thing that I wanted to point out in your blog-Medicaid does cover Adult Day Health Care (ADHC) for those who qualify and this was created as a community-based alternative in the 1970s to nursing homes. People get to live independently with some assistance and oversight from ADHC. It was so astounding that they tried to eliminate it in 2011, when it was a cheaper and more humane alternative to prevent or delay placement in skilled nursing. Only there weren’t enough skilled nursing facilities left, unless you moved folks to the Central Valley away from their family and community. But we won a lawsuit and prevented that from happening.
It always amazes me how many people think old age happens to someone else. Or how they can write their last chapter. Money does help, but loneliness is the real killer.