gmhTODAY 17 gmhToday Nov Dec 2017 - Page 84

{ } AGING with an Attitude Under- standing is in the details Dorie Sugay is the Executive Director of Visiting Angels, a company that provides living-assistance services to seniors and adults-in-need who wish to stay in their own home or receive one-on-one care within a facility. This article is for informational and educational purposes only. It was written independently of Visiting Angels. The names of clients and caregivers were changed to protect their privacy. 84 L ife’s details are often missed when one cannot be there in person—details that matter. A TV commercial comes to mind. In the commercial, two men are talking as they sit around a backyard fi repit. “How are things?” asks one. “Okay, you?” replies the other. “K,” the fi rst responds. The conversation ends and both men silently stare at a fi re. The next scene takes us inside the house to the kitchen where an older and a younger woman are talking. “How are things?” asks the older woman. The younger woman begins talking about her son and how well things went on his fi rst day at school. Her description of the event is so detailed that it’s easy to imagine the little boy grinning with pride and enthusiasm. We all communicate differently, sharing different levels of detail. At Visiting Angels, our clients’ family members often share with us their frustrations with what I call “backseat drivers.” In other words, family members who send instructions or make judgments without knowing all the details. They care, but they are not present to observe fi rsthand what is going on with their loved one. As I write this, I am sitting next to my last surviving brother, who is in hospice. I took a leave of absence from work to help out. At times, it means being “on duty” for ten or more hours a day. Family members often forget about the sacrifi ces made by those who are providing daily care for their loved ones. There is both a physical and emotional toll to contend with, especially when the caregiver is not trained to serve in that role. Often the demand is constant—adjust- ing a pillow, making sure the water glass is full, repositioning, massaging what hurts, etc. It is not necessarily hard labor but it is exhausting and often overwhelming. It is hard to watch a beloved family member when a debilitating illness progresses, stripping them of their capabilities, their independence, and their dignity. It takes its toll on one’s heart, mind, and soul. These are the types of details missed by family living some distance away. If we are lucky, our loved one is lucid, able to communicate and to sleep through the night, affording us some sleep. Often, how- ever, the caregiver is awakened by a moan, or a plea for help. As caregivers, we fi ght back tears, try to stay calm and breathe even as our chest tightens. We don’t want our GILROY • MORGAN HILL • SAN MARTIN NOVEMBER/DECEMBER 2017 feelings to show. Bottling up emotions becomes the norm. It’s not unusual for caregivers to feel helpless, sad, and empty. There’s a realization that love is not enough. For many in a hospice phase of care, pain medications do not provide relief. As caregivers struggle with the question—is sedation the answer? When a loved one must be sedated, it presents a different challenge. My brother looks at me and mutters, “I don’t like this,” because the medication makes him lethargic. It’s painful to witness the silencing of his characteristically smart and humorous conversation, to know that he’s merely existing as he waits for that moment of liberation. When family members are absent, they don’t experi- ence the details of a loved one’s journey. As I write this, I am comforted by a sense of gratitude because those of us present by my brother’s side share the same goals and we are blessed with family members who are medical doctors to guide us. But we too, deal with “back- seat drivers” who criticize us and make slanderous comments and unfair judg- ments. They don’t know all that is going on because they aren’t here. My hope is to help other families with these words: Unless you wish to be on location, please remember that there are many details you miss. The people who are busy providing or supervising your loved one’s care may be too busy and/or too distraught to give you the details. Don’t blame them. If you want to know more, be present and participate in the caregiving. The Dalai Lama is quoted to have said, “If you can’t help them, don’t hurt them.” If you can’t help with the daily demands of providing or supervising care, don’t add to the challenge by being critical or slanderous. Instead, call. Stay in touch with the doctor, if possible, and those who are providing the daily care. Ask specifi c questions and gather informa- tion but remember that without fi rsthand experience of your loved one’s situation, you’ll be missing some details). You may have good reason for being absent, but it doesn’t change the fact that you’re not part of the onsite caregiving effort. If you have recommendations for the caregiver, be respectful in doing so. gmhtoday.com