I'm so relieved that the world is back to operating without the restrictions and isolation of COVID. If I had to find a bright side to all that chaos and conspiracy, I would have to say that I am grateful for the spotlight that was finally placed on long-term care communities and caregiver challenges. Even though we are learning to live in a new disease-control society, I am sick of hearing that the difficulties were due to COVID. Caregivers have been challenged long before COVID became the nightmare pandemic.
November 2019 was the month we transitioned Mom to living in her first assisted living and memory care community. This move was the month I finally accepted that I had reached my limitations in providing specialized, around-the-clock care. By March 2020, the world shut down, and my inside track became dependent on caregiver video calls, so I could see and speak to her. Our weekly call helped calm my anxiety a bit, but it did not give me a complete feeling of trust that her needs were being met. Families were told the administration was doing its best due to the circumstances. However, the turnover had begun to take a toll.
Only six months into living in the memory care community, Mom experienced scabies for the first time in her life. I had never heard of it before, and I was disgusted once I googled the cause with remedies. The care had its ups and down during COVID, making it hard to blame anyone or all of them. I still moved her to another community the first chance I had, hoping that a smaller community would provide better care. I was wrong. We experienced the same and worse problems in the smaller community.
Within five months of living in the second community, Mom's Kidneys began to fail due to food she was served and a host of other issues. Luckily, I had the chance to speak with another resident's family to discover the same thing happened to their loved one. We quickly compared notes about the staff routines and challenges we faced to get down to the main problems. The caregiver ratio to the resident was 16:2 during the day and 16:1 overnight or from 5 PM to 6 AM. Caregivers were not only spread too thin but were also charged with far more duties besides caring for the residents during their shifts.
When I brought this concern to the owners, I heard the same COVID turnover response. As an accountant, I could see it was their cost-effective attempt to protect their profits. However, by adding more qualified caregivers instead of their company family members it put the residents in jeopardy while protecting their profit sharing. This experience is when I began to pay closer attention to Mom's pharmacy statements. Her behavior became more aggressive, so medications were provided for managing her outbursts that kept her lethargic and compliant. This response was clearly not in Mom's best interest because some of her aggression was due to too much sugar, no privacy or understanding for sexual expression, and no mentally stimulating activities.
A compliant resident is what is needed to manage such ridiculous and dangerous ratios. This unbalanced ratio contributed to caregiver burnout and residents not receiving timely compassionate care.
Family caregivers are not paid to care for their loved ones. Most cannot afford to transition their loved ones into an assisted or memory care community, so they push beyond their limitations and boundaries. The emotional and physical stress contributes to caregiver burnout and exposure to Dementia themselves. The stats of Dementia cases keep rising, and long-term care communities are not popping up as quickly as apartments or duplex housing in most cities. Regulation is complicated, but checks and balances of existing communities need a hard look again, regardless of COVID.
I sent an 18-page account of all the issues contributing to Mom's decline to the Texas HHS ombudsman regarding the negligent care in my Mom's 2nd community. The community was investigated, but I received a notice stating they could not find anything wrong. The community was allowed to continue operating with poor standards, charging $5K a month and knowing how to manipulate the system. Needless to say, I moved Mom to a third community.
The third and final community has been the winner and model for all other communities, the Goldie Locks Zone. The ratios are less of a concern because the caregivers are hired with a higher level of experience, to begin with, and then continually educated each quarter. The staff schedules are considered to ensure they have consistent shifts to learn resident routines and habits with plenty of time off for respite care. The search for Mom's next forever home was shocking to find such a difference in price and commodities as if I was picking out a gym for workouts. Mom's needs were met surprisingly well within her budget. Mom did not have aggressive behaviors or need additional medication management because they provided outlets for energy, privacy for any other personal expression, and activities to stimulate her mind or for fun.
The aging population is becoming more dependent on affordable memory care communities, so education is even more important now to understand the specialized needs of those with Dementia. Caregiving styles are the root cause of increased stress and anxiety among residents. Those styles are often created in response to managing overwhelming work schedules and expectations. As a parent raising two children, I know how challenging and stressful daily routines can become. I could not imagine managing 16 to 32 individuals with mental health conditions without adequate support, training, and breaks.
We tell our family caregivers to take respite time as often as possible, but the caregivers in long-term care are not afforded the same considerations. Until we change our view of how long-term care communities manage resident care, then we can expect the gap to remain and expand. When profit over humanity takes precedence, our loved ones living with Dementia will continue to be disadvantaged.
Some of the challenges I have seen in assisted, and memory care communities are:
Staff Burnout or caregiver burnout. I could see the difference in those caregivers that provided genuine, compassionate care from those who were burned out, overwhelmed, and pushing through a daily shift with a bad attitude.
Lack of individualized attention. When caregivers are grossly outnumbered by their residents, the quality of care and support for each is significantly reduced.
High Caregiver staff turnover. A caregiver can only withstand a consistently high-stress level before they break, which also negatively impacts the residents. Relationship bonds are broken when the caregivers leave.
Safety concerns. When Caregivers are outnumbered, this creates a concern toward handling emergencies and responding timely, creating more anxiety for the residents.
Limited activities and socialization. Routines for residents are already difficult to manage in meeting activities of daily living, so meeting their mental and emotional needs often get neglected because an overwhelmed caregiver can only do so much throughout one shift.