The phone call...

My entire career in LTC never prepared me for the role I would assume on September 25, 2015. On that fateful night, I was called to the emergency room some 65 miles away to take on the role of caregiver to my 77-year-old mother who had suffered and survived a massive right cerebral hemorrhage, the dreaded CVA. No history of hypertension or other chronic conditions, she suffered from an AVM (arterial, venous malfunction). In a split second, she lost her ability to take care of herself. She worked full time, lived alone, drove a car, and had an independent life up until 10 pm that Friday night. At that same moment, my life and the lives of my husband and children would also change in ways I had yet to imagine.

I am a full-time Sandwich Generation caregiver of my dependent mom who lives in my home with my husband and two boys, ages 13 and 15. I also have a daughter, 27, who lives in Florida. Like most Sandwich Generation caregivers, I was unprepared to take on the awesome responsibility of caring for an elder in my home but felt I had little choice. I am the only daughter, and my only sibling lives 4 hours away. The failures I experienced and continue to experience in our health care system, are issues common among caregivers. As a health care professional, I feel not only the burden of my situation but feel responsible towards improving the failures of the system. The chronology of mishaps and failures were journalized by me over the past eighteen months and read like a case study of the failure in elder and caregiver health policy.

First, the emergency room (ER) failed to notify the emergency contact. There was an existing medical record in the hospital registry with whom to notify. My mother was in the ER for 3 hours before someone she worked with contacted me by phone to tell me she had a stroke. I lived 1.5 hours away and rushed to the ER arriving by 3 am. I was told that she had been assigned to the neurologist on call upon arrival to the ER at 10 pm; however, that neurologist was on vacation for one week starting at midnight (3 hours after my arrival). As a result, Mom was placed on the admitting neurologist on-call service and had rotating neurologist every day of her hospital stay. Hence, no one was invested in her care, and there was a communication breakdown between neurologists and their NPs and PAs. The lack of care coordination led to caregiver stress as I had to manage her change in medications, respond to repeated request to provide alternative nutrition, navigate decisions based on variability in implied prognosis, and advocate for her care in the absence of a hospital advocate. All the while, I did this for 7 days sleeping on a hard, vinyl love seat with no blanket or pillow in a cold room. I was truly in what I considered a living nightmare.

Being a long-term care (LTC) administrator, I had the advantage of having a close friend who ran a reputable rehabilitation and health facility within 30 minutes of my home. I felt fortunate yet pensive knowing the challenges in LTC. I hired a private sitter to be with my mom from 7 pm to 7 am every night. During her skilled rehab stay, I felt like the undercover boss and was unfavorable with the staff when my mother left the facility upon completion of her 100 days. Once in my home, she attended outpatient therapy at a local hospital for several months. She discharged after reaching her Medicare cap for Part B therapy but not because she had reached her functional goals. To continue therapy, she would have to pay private which was not an option. After several months and a decline in function, her physician ordered PT and OT in the home. With each therapist, a different durable medical equipment (DME) was recommended to enhance independence. At this time, I have a graveyard of unusable DME in my storage shed.

One year after moving Mom in the house, I enrolled her in an adult day health center (ADHC) operated by the Fairfax County Health Department and she attends twice a week. Although she is not enthusiastic about going, she realizes I need the respite and tries to make the most of it. Many of the participants suffer from dementia and Mom, with all of her cognitive abilities intact, finds it difficult to find companionship and meaningful relationships at the center. I also applied for the Virginia Lifespan Respite Voucher Program (VLRVP) in September 2016 and was awarded a $400 allowance for respite care. The Virginia Department for Aging and Rehabilitative Services (DARS) manages this respite program. In my opinion, respite care is one of the healthiest options for a caregiver to mentally and physically rejuvenate. Unfortunately, it is very expensive, and access is limited.

My disappointment in our health care system perseverated in early December 2016 when my mother needed both acute and post-acute care for a wound infection and significant decline in physical function. The failure upon failure happened among the primary care physician, ER, hospital, and home health agency. My stress and anxiety as a caregiver come, in part, from the lack of support from the U.S. health care system. Since the stroke, my mother has received long-term support and services (LTSS) via countless of health care providers. Interactions and services received by LTSS providers include hospitals, primary care physician, neurologist, skilled nursing facility, outpatient therapy, home health agency, county health department, DARS, PACE, Department of Family Services, and Department of Social Services (DMAS). Through all eleven LTSS provider or agency interactions, no one has placed my mother on an LTSS tickler list or placed me as the caregiver on an LTSS mailing or email list to inform me of services available to either my mom or me. In the information age that we live in, I find this mind-blowing but yet poignant as to the state of fragmentation of our health care system today. The system's reliance on unpaid caregivers to not only care for our largest and growing vulnerable population; but to also navigate the complex web of services and financing of services without a social and healthcare schematic, is a national tragedy.