Changes in society have led to changes in the caregiver role.
The extended family – where several generations lived near one another – used to provide a built-in caregiving structure. But today, that structure is rare. Far more often, children scatter and raise families elsewhere, parents retire to the sunshine, couples divorce, and people are widowed. When someone needs care, it may come from children or relatives – or it may come from caring friends
In Part One, we looked at the emotional, physical, social and financial challenges when life threw a curve ball into a couple’s life and one spouse took on the role of caregiver.
In Part Two, we’ll look at the frequent caregiving journey when the person needing care is not in an intimate relationship with the caregiver. Recently, a friend shared her unexpected caregiving experience with her neighbor. We asked her to tell the story.
Bill grew up in Quincy, Mass, graduated from high school, was in the Coast Guard Auxiliary, went into business, married and started a family. As strong as his connection was to the Quincy area, he moved to Florida following his divorce to finish his career. By last year, I had grown very fond of this nice 80-year-old man who I greeted on his front porch for ten years during my daily walks. I enjoyed listening to his stories – told in his charming New England accent – and often wondered what would happen when he could no longer care for himself.
That question was answered through Bill’s 2 a.m. phone call asking me to take him to the ER in what became the first of four hospitalizations. I soon discovered that I was his medical surrogate, a job made more difficult by Covid restrictions. Bill had no family in Florida, so I became his medical advocate, caregiver, financial coordinator and cheerleader. For 45 days, I confronted the medical community in hospitals and rehab, ensuring he got the care he deserved in a system that will ignore you if you’re elderly and alone. My motto throughout – including while accompanying him through hospice – was, “When facing death, there are no do-overs.”
Emotional: When you don’t have a couple’s intimacy, the caregiving role starts out very action oriented. However, every aspect of a person’s life can become your responsibility with time. Dealing with uncooperative hospital systems and insurance companies became a battle I didn’t dare lose. An emotional rollercoaster developed as I kept cheerleading through the inevitable worsening diagnoses, ups and downs, hopes and fears. The ride culminated with telling my friend Bill that he was dying and would never go home to sit on his beloved porch. The next step was to offer closure: coordinating with far-off family and friends, smoothing over family rifts, writing all friends on his email list, dialing the phone to let him say goodbye to those he loved and cared for, and finally carrying out his last wishes. My goal was to ensure that Bill died in peace, but that effort drained me emotionally in ways I could never imagine. My mistake was thinking I could do it alone; I, too, needed support to stay emotionally centered.
Physical: Whether caring for a friend or loved one, the stress of caregiving invites the same physical challenges: poor sleep, new eating habits and pressure on existing health conditions. Again, moving someone 100 pounds heavier out of his house and into the car on multiple ER runs is taxing. The physical burden of lifting and moving Bill shifted to hospital and nursing staff once he was hospitalized, but life on the outside continued its demands: his and mine. This is no time to play Wonder Woman, but rather the time to ask for help with every possible task and chore, whether Bill’s or my own, but I didn’t do that.
Social: Not everyone is comfortable when someone they know is sick or dying. Many of those I expected to accompany Bill were silent and invisible. That also held for some family members, although some made extraordinary efforts to see him. The best you can do is provide information, remove every possible obstacle and fill the gaps by remaining a constant and reliable visitor. Wherever I could, I created a bond with hospital staff so they’d feel invested in his care more than they would be without it. And I broke the rules to bring some pleasures from home – especially after the prognosis was clear. The rules were worth breaking for anything that brought joy, comfort, a memory – in short, a social connection with life.
Financial: It’s not easy to insert yourself into someone’s financial life if you weren’t there before they became sick. You find yourself asking questions you would never have dared ask before. Hopefully, a level of trust allows you as a caregiver to keep as many balls in the air as possible without creating any legal or financial liability for yourself. It may require access to computer accounts to keep bills paid, possible access to legal documents to coordinate a handoff to an executor, and documents supporting final wishes. Much of this could be facilitated with a trusted financial advisor, estate attorney and other designated professionals.
The life lesson? Nothing prepares us for the end-of-life caregiver role (except maybe having done it before). But what makes it easier is remembering that we don’t have to do it alone. We can ask for help. Where do you need to ask for help in your life. Do it today.
Originally published in the Old Colony Memorial.