This is a story of perseverance. It is one filled with obstacles and disappointments but it is also one filled with strength and resilience. If you have been a caregiver for awhile it is apt to mirror some of your journey. If you are new to the role, take heart. There will be challenges that seem insurmountable but you can rise above them, emerging stronger than ever before. Now hold on for the ride, this story gets bumpy.
“Will I know anyone there?” I had heard that question with each military move. Being a new kid on the block was never easy but our kids mustered up the courage to press on. It would take months to navigate the unfamiliar, packed with its mix of excitement and insecurity. Now, that burning question hums in my father’s mind too. Moving has become so commonplace for him that I now refer to him as an “elder brat.” As it was for our military brats, the moves are thrust upon my father with little if any notice, and fraught with abrupt urgency.
In the nine years of co-caregiving for my parents, this scenario has played out seven times. That averages out to a major move every year, although he was fortunate to stay at the last place for 3.5 years before being forced to exit. My father is now among a new generation of orphans.
AARP cited recently developed guidelines by American Geriatrics Society for how public policy and the health care industry might assist elder orphans. While the term elder orphan is used to describe individuals living alone with little to no support system, I have adopted it to address this episodic type of homelessness which is hidden from plain sight. The elderly are being forced out – given the boot – told they can no live in their chosen senior communities with little explanation. The most common reason stated: “You need a higher level of care.” Sometimes there is advance notice and sometimes not; sometimes there is opportunity to gain strength through rehab and then return and sometimes not; sometimes it helps to call the Ombudsman Program and sometimes not.
Medicare and states guidelines are often leveraged in such exits as care places can be fined or closed if they go beyond a defined scope of care. All it takes to send family caregivers scrambling is a fall or sudden decline in a loved one’s abilities.
Hospital stays send us caregivers into overdrive. If discharge comes within three days, there may be a chance of going back to a familiar setting. Otherwise, rehab becomes the go-to, and going “home” becomes a big fat question mark. At 89, my father must weather the crises apart from us. The days of being able to be present were taken by Covid-19. We compensated with calls to the nurses, and tries to catch the doctor and physical therapists to get updates and shared nuances of dad to give him a fighting chance.
These care challenges did not start in the pandemic, though they certainly have escalated in the midst of it. Now, an elderly patient doesn’t have to be hospitalized for three days to qualify for Medicare-covered rehab stays – the pandemic erased that requirement. On the surface it sounds good, right? In actuality, it means less time to recover in the hospital setting. Being medically stable, but weak, is now an easy formula to get a quicker boot from hospital to rehab. Caregivers must stay on top of the rules and practices, lab results, test reports, and understand the right to appeal a discharge. Breathe. Slow down. Go outside and sit awhile. Take turns with siblings (if possible) in meeting the challenges. Be as proactive as you can and don’t beat yourself up if it fails; there is no magic formula to avoid the pit stops.
The challenges we have faced first reared an ugly head in 2012. The old house was no longer safe for mom; she had broken her pelvis in a fall down the stairs. She had been requesting Florida sunshine for years, but Dad was resistant to moving. Together, they were disappearing into a shell of darkness called Alzheimer’s. Denial was like a stuck button in the grief channel on my dad’s playlist. Mom’s fall forced him to see the light — the reality was mom couldn’t go home. Home wasn’t workable anymore and rehab wasn’t going to get her up those stairs, ever again. So, my husband and I stepped up to the plate, and together with my siblings’ help, we moved mom and dad to a senior community near us – in the Florida sunshine. Albeit short lived, Mom’s request was fulfilled. The new place gave them opportunities for day trips, bingo, socials, and the beauty of the beach.
Like military brats nearing the typical 2-year mark, another move was thrust upon them. Mom fell again and broke her hip — a hospital stay, another rehab — where she fell and broke the other hip, all within a month. She couldn’t go “home.” Again, the familiar wasn’t workable anymore. We shuttled him back and forth, from apartment to rehab, as he begged me time and time again. “You have to find a way to get her back with me. I can’t live this way.” His plea was heard; change came with a fall (again), only this time it was dad. He had a heart attack and tore his shoulder in the fall — he couldn’t go “home” to the senior living apartment — it wasn’t workable anymore. My siblings and I kicked into high gear, prayerfully working together again for dad’s sake.
Another move, nearing the 2-year mark, like a miracle shining bright as the Florida sunshine, they reunited for mom’s final chapter in their 64 years together. They enjoyed the embrace of compassionate end of life care. That 8-bed care home was a safe and secure station, until mom passed away. Within two months, dad developed an infection and was hospitalized. Complications ensued and he was destined for rehab, and told he couldn’t go home, again — it wasn’t workable anymore. The syndrome of being an “elder orphan” was setting in deeper and deeper. “I can’t live this way. You have to find another way,” my father pleaded.
I made him a lofty promise: “If you work hard in rehab and get strong, I will find a way to get you home, back to New York.” He kept his end of the bargain and I kept mine. Together, my siblings and I searched and found a new home for dad, one that was near all the family he had missed in coming to Florida (all for mom). One that we thought would be his last. Nightly movies, bingo, homemade meals, a pampered lifestyle, and new friends filled dad’s lonely heart (in missing mom) at the new place.
Another move, just over the 2-year mark, like the military brat lifestyle, my dad was given the boot, again. Covid-19 had hit him hard in 2020; we have all felt the weight of its impact. My dad fought his way back after 56 days of hospitalization and rehabilitation, thwart with the loneliness and isolation many now know. His bouts of weakness and fatigue lingered on, as did the lockdowns and quarantines. Intermittent window visits and Zoom sessions became our best hope of seeing him. This was not living, but it was still “home” for him — until the lingering symptoms led to complications.
Turns out a severe case of Covid-19 (like his) can make for a severe reaction to the vaccine. 1st shot would be his last shot. The nurse practitioner feared he wouldn’t make it through the 2nd shot. My siblings and I have all (thankfully) avoided getting the virus and are now vaccinated (and doing well). It is our best shot at getting to spend time with dad in person. He fought his way back home faster than before. And, we fought against the discharge clock. Call after call, my siblings and I rallied – making calls to the nurses, catching the doctor and physical therapists, and sharing nuances of dad.
It all bought him 30 days back home. Then came the boot! A trip back to the hospital, on his Covid-19 anniversary, startled us all. Medically stable but weak, the staff back at his home base rejected his return, saying he needed a couple of weeks of rehab. He fought his way back but it didn’t change the trajectory. They gave him the final boot. He couldn’t go home, again. It wasn’t workable anymore. They didn’t even want to hear of the progress he had made in rehab. They seemed to have lost their compassion and we were left scrambling to find a right home, again. The criteria was tight and the choices ever so narrow.
“Will I know anyone there?” This time his question pulled on my heartstrings more than all the years of hearing it from my own children. My father has now moved more as an “elder brat” than we did inside 28 years of an Air Force career. Dad’s physical limitations are more than any of us adult children can manage in our homes and his preference is to be among his peers (not his kids).
Medicare and states guidelines need to be changed so that facilities are motivated to be places where seniors can age in place. The elderly deserve to be grandfathered; if the care model changes it should not affect their right to reside in that chosen place; the criteria should not be allowed to change mid-game. The bar should not be an insurmountable task for seniors, it should instead be raised for those providing the care. Being given the boot, being told nursing homes are the end all be all, and being put in unpredictable situations has to STOP.
We have chosen a new care place for dad, among other elder orphans who cannot go “home” again. Based on its criteria and based on his state of health, we are fairly confident this can be his final home. It holds all the favorites of old along with some new things on his wish list. So we forge ahead, on a wing and a prayer, in the hope dad will know someone there.
Borrowing from the words in a National Institutes of Health article, “we hope that our [story] will also provide housing and healthcare professionals, policy makers, housing authorities, relocation counsellors, real estate agents and developers with the evidence they need to adopt a holistic approach in addressing the needs of older adults, not only in making housing decisions but also in providing them with alternative housing that is suitable [for the remainder of their lives].”