Five months passed since the stroke, and for three of those months, we were back in our hometown. I confess, I found myself gradually losing control of the situation. Every day, I stood by Carl's side, ensuring he felt loved and cared for, all while juggling conversations with doctors, nurses, insurance companies, and the daunting stack of bills – bills that seemed to multiply like an unstoppable wave. Doctors' names I didn't recognize, tests with uncertain results, and charges that could have given me a stroke myself.
In addition to the chaos at the hospital, I had a household to manage, a full-time job, and a disabled adult son who needed my attention. Appliances broke, the lawn overgrew, gutters clogged, and the never-ending laundry and meal preparations loomed over me. Pets begged for love, vehicles required maintenance, and even my garage door chose that moment to break loose from its springs. The river of problems overflowed from all sides.
It was during this time that I truly understood the significance of having family nearby. My own family lived overseas, and Carl's family resided out of state. Friends offered kindness and assistance, but their lives carried their own burdens. I couldn't bear to ask more of them. I needed daily help, and I needed it urgently. I felt as though I was shouldering a burden too heavy for one person to bear, but I clung to the belief that, as the saying goes, 'God never gives us more than we can handle.' Sometimes, it felt like He believed in my strength more than I did.
I confronted the reality that Carl would soon be returning home, and I was clueless about managing it all. My top priority became seeking help from anyone who could spread the word about available assistance or job opportunities. If they couldn't care for Carl, perhaps they could help with household chores. Our savings account took a hit, but I had no choice. It made me wonder how those without the financial means endured such hardships. My heart swelled with newfound compassion for their struggles.
I scoured the internet for agencies, elder care facilities, social workers, and organizations like the United Way. I compared the exorbitant prices charged for home care help, especially considering that most didn't accept health insurance, let alone Medicare. Agencies and facilities were the worst offenders, with their hefty expenses for running a business and turning a profit. I couldn't lose hope, so I kept searching until I stumbled upon a privately owned franchise with a good reputation and relatively affordable rates, according to online reviews.
The process involved paperwork and forms, allowing me to request a qualified CNA to be sent to the hospital. Her name was Michelle. I emphasized that she needed to be my eyes and ears, keeping me informed throughout the day, including doctor visits, their names, and any pertinent information. I also told her to call me immediately if she noticed anything amiss. Having been in the hospital myself for surgery, I knew the importance of having an advocate. I signed the paperwork while under pain medication, unable to believe such a signature counted as a binding contract.
Michelle sat with Carl, providing detailed updates on his condition. She was caring and friendly, and worked seamlessly with me. The arrangement lightened my load, but it wasn't long before new challenges emerged.
A few days into Michelle's presence, she texted me about Carl's arm hanging off the bed. Normally, this wouldn't have worried me, but he had a mid-line IV for antibiotics in his arm. I couldn't understand why she'd text instead of simply adjusting his arm for comfort. She explained that her agency had strict rules preventing them from physically assisting patients. Frustration surged as I tried to comprehend this one rule in the face of my ongoing battle with the medical industry's red tape.
I gave Michelle permission to move Carl's arm and promised to resolve the issue with the agency. It was a bewildering rule that added to my stress and compromised Carl's comfort, thanks to the agency's lack of communication.
As Carl's return home drew nearer, my primary concern was securing in-home care. Despite the initial hiccups with the agency that provided Michelle, I continued our contract with them. Unfortunately, the revolving door of incompetence opened, and one inadequate caregiver after another walked through it. Some were lethargic, providing minimal care, while others idly scrolled through their phones.
At home, I kept a vigilant eye on everything. I caught Carl's briefs overflowing while CNAs lounged, seemingly waiting for them to reach their limit before changing them. Some never showed up without a word or call. Others arrived significantly late, with no notice or communication. A couple even decided to leave early, a decision that neither the agency nor I had approved. One well-intentioned caregiver admitted that Carl was too much for her to handle, offering to help with cleaning instead. The arrangement lasted briefly before she, too, disappeared without a trace.
To be fair, a few genuinely caring CNAs crossed our threshold, but they never stayed long. CNAs frequently sought private employment to escape agency regulations and earn more money. I couldn't fault them for it, but it left us in a constant state of uncertainty.
Writing this, my heart aches for patients who lack the support we had. The thought of facing such difficulties alone, without family or friends to lend a hand, is truly terrifying. My experiences with nursing facilities have left me with a deep aversion to such places. It's disheartening to see the disparity in funding between poorly equipped facilities and those offering excellent care, like the one in Jacksonville.
Now, I understand the immense value of in-home care and the importance of finding the right caregiver. Back then, I had no idea how to start this journey. I didn't know what questions to ask or where to find information that could streamline the process. As we grow the resources on this website, we will continue to compile a list that could save you time, money, and heartache. Please feel free to use it, but don't consider it exhaustive for your unique needs. Begin your research while you're healthy, seek advice from friends, relatives, or church leaders, and create a support network. We're here to help where we can. Don't endure the journey alone, because sooner or later, the time will come – and feel free to come back and share any additional resources that you find. Meanwhile, know you aren't alone. Send us a message any time and we'll be back in touch.