Caring for our aging parents and ourselves: Jane Everson and Frances Hall at TEDxHickory

We've all heard about the aging population. We've all heard about the silver tsunami and the graying of America. AARP, American Association of Retired Persons, says that every day, 8,000 people turn 65 years or older. And that trend will continue for the next 20 years as we baby boomers age. And according to the United Nations, our aging population is a global phenomenon. For the first time in history, the number of adults in the world age 65 and older will soon be greater than the number of children under the age of five. And by the year 2030, 55 nations, including the United States, and again, for the first time in history, will have a population of people age 65 and older that exceeds 20% of their total populations. We've heard about the aging population a lot and the impact of that. What we have not heard about, though, is the impact of the family caregiving. The Family Caregiving Alliance says that there are 31 million adult children who are caring for their aging parents or their in-laws. How many of you are adult children of aging parents? How many of you have ever made a decision about how you spend your time and that decision has something to do with an aging parent or an in-law? Several of you, are you raising your hands out there? How many of you have ever made a decision about a job or your career based on your parent or your in-law? If you answered yes to any of these questions, you, my friend, are an adult child of an aging parent. Caregiving for an aging parent offers joy, but it also offers a lot of challenges. There's an old Chinese proverb that states, a journey of 1,000 miles begins with a single step. Caregiving for your aging parents is such a journey, it begins with a single step. So what does it mean to be an adult child of an aging parent? To be a caregiver. It means daily, weekly, you call your mom just to touch base, just to make sure she's okay, but also to make sure that she's eating and she's taking her medication. Caregiving is visiting your father and recognizing that he doesn't know who you are for the very first time. It's getting the dreaded phone call, your father has died. Some parents live close by, but others are quite a distance away. Long-distance caregiving has its own particular challenges. For example, you know that you need to have some conversations, finances, plans, wishes, those kinds of things. Well, do you do that over a phone or do you do that by getting in a car and driving or getting in a plane and flying? You know you need to do it, but how do you do it? Long-distance caregiving also means that you're juggling a lot of schedules. You're juggling your child's school schedule, their vacation. You're also scheduling and juggling your personal vacation and your spouse's vacation. But caregiving also has joys. Caregiving is about playing golf with your 89-year-old mother and laughing when she beats your score. It's about being with your mother and smiling when she holds her great-grandchild for the very first time. We all begin our caregiving journeys at different points and at different times. When we begin the journey, we all know the final destination, but we don't know the route and we don't know the travel time. This is my mom. Two years ago for Mother's Day, I had some pictures taken. It was a great day. We had a lot of fun, but the pictures have been really nice for us to have. Even at 94, my mother is on a walker, but even at 94, when she walks into a room, you know she's there. She has quite a presence about her. Some of you know my mom. My mother is a strong woman. She is still very much in control at 94. Over the years, though, anytime there was a health issue, a health crisis, I was the one who was there. I was the one taking care of her. I was the one who was making sure that everything was okay. I knew from the time I was a child that I would be my mother's caregiver at some point in the future. As mom aged, my weekly phone calls to her became daily ones, and then a couple of years ago, I decided that I really needed to go visit her once a month, just partly to have the time. She was getting older. I wanted to have the time with her, but part of it also was to make sure that everything was okay. She was still living by herself in her home in Alabama. She was doing very well. She had a wonderful circle of friends, but I just wanted to be sure that everything was okay. She was seven hours away from me and seven hours away from my brother. She even had a plan. She knew when she could no longer manage a house, she knew what she was going to do, and it was good. But a diagnosis of a rare and a serious health issue in combination with the decline of her neighborhood, the deterioration of her neighborhood, prompted her to make a decision to make a move and to move here to North Carolina, where she knew no one except my husband and me. We thought everything was set. We thought it would be a great move for her. It has been a very difficult journey for her, much more difficult than either of us could have anticipated. My independent, energetic, fun-loving, always in control mother now was sad, homesick, really resentful, and afraid. She was in a whole new world, but so was I. For the first time in my life, I didn't know how to care for her. I didn't know how to help her. As she continues to age, I see her world narrowing. It's hard to watch someone decline when you love them, but nothing I can do will stop the hands of the time. Nothing I can do can postpone the inevitable. What I can do, though, is I can accompany my mother. I can be her advocate. I can intervene for her when it's appropriate, and I can be her cheerleader and her support person for as long as I have the opportunity to do that. This is a photo of me and my mother taken about six years ago, about the point at which I realized that I was on a journey with my aging parents. At the time, my mother was 75, my father was 80, and they were both in relatively good health. But at age 80, my father was diagnosed with congestive heart failure. Over the next five years, his physical deterioration was palpable. He continued to drive. He continued to hunt and fish at his beloved cabin in West Virginia. He continued to manage all the household finances. Like Frances, I began visiting more frequently. What had once been three times a year visits now became monthly visits, 400 miles from my door to their door, 800 miles round trip. I began asking questions. I began demanding answers. Tell me about your financial situation. Tell me about your legal status. Tell me about your insurance benefits. Talk to me. Tell me something. Finally, I began making pleas with them. Do something, anything. Sell the truck, downsize, move closer to me. Help me just do something. I was anxious, I was resentful, I was frustrated, but there were also days that we had lots of fun and I was very hopeful about the future. I began to see myself in a different journey with them. I couldn't be their fixer, but I could be their informed advocate. Then in 2013, my father had a stroke. His heart stopped. He was hospitalized and resuscitated. He spent two weeks in intensive care. He had a pacemaker and defibrillator inserted in his chest and he was moved to a skilled nursing facility for rehab services. He died in the skilled nursing facility 10 days shy of his 86th birthday. My mother and I had been making a plan, a good plan to bring him back home. My mother with great confidence, me with trepidation. My journey with my aging father had come to an end. The last few weeks were very difficult, but I am grateful and will always be grateful for what I learned about him, about me, about aging, and about caregiving. I desperately wanted to help my mom when she moved here. I also needed some help myself, very honestly. And I started hearing more and more adult child caregivers say to me that they really wanted to help their parents, but they didn't know how. When you encounter a need, when you encounter a need, when you encounter something that you don't know what to do with it, you have several choices. You can either take advantage of what is available. You can run screaming saying, I can't do this. Or you can create your own solution. And the third is what I did. In 2010, I created, I envisioned, and I began ACAP Community, Adult Children of Aging Parents. In 2013, Jane came on board. And together we've been doing this for a while. The mission for ACAP Community is very simply providing information, resources, support, and community for those of us who are adult child caregivers as we care for our parents and as we care for ourselves. Everyone who embarks upon a journey will benefit from help. Sometimes we need information. We just need to know answers. Other times we need resources. We need to know where to go for information and services. But more often than we know, what we really need and may not be able to acknowledge to ourselves is the experience of being with other people who are going through the same journey. Frances and I are recognizing that our journeys are about learning from our aging parents, but they're also about learning from others on the same journey. And as we journey, we learn not only more about how to care for our aging parents, but also how to care for ourselves. Based on our experiences and based on conversations with other people, wisdom is ever evolving, but there are some particular insights that I've gained. One is safety is not negotiable. Driving a car is tantamount to independence, and we can't fathom not having that independence. But as we age, physical limitations make those quick reactions almost impossible sometimes. Medications can adjust or impair our judgment. And certainly, older eyes have great difficulty sometimes seeing signs, other vehicles, and even pedestrians. What do we do when we know that a parent needs to stop driving, but they don't know that, or they resist that? What do we do with that? What do we do with a situation that we know that our parent or our in-law really is in a safety issue? It's not a safe situation. What do we do with that? There are difficult conversations to have regardless. And the consequences, either to have the conversation or not to, the consequences are difficult. But the reality is, when it's a safety issue, there simply is no wiggle room. Safety is non-negotiable. Caregiving is a bittersweet journey. Journeying with our parents as they age is a difficult thing to do. That journey is a culmination of all the years that we have had with our parents. And with that advanced years, with that aging, can come either the intensification, the magnification of the sweetness that's been in the relationship the whole time, or the struggles and the difficulties. It's hard to watch someone decline. If we're fortunate, we have the opportunity to journey with our parents as they age. But if we are wise, we acknowledge that this is a time that we get to make sure that that relationship is very, very solid. We get to deepen that relationship because time does run out. Be gentle with yourself. Those of us who are adult child caregivers know the intensity of the situation. We have to take care of ourselves because no one else can do that for us. My wisdom about caregiving comes not only from my caregiving with my parents, but from my conversations with Frances and from others. It's simple, but I think it's important for you to hear. Prepare in advance, but expect changes. I'm a planner, most human beings are. And like most adult child caregivers, I want to take charge. What I have learned is it's great to make a plan and everyone should, but expect changes. My mother and I planned every detail to take my father home. We did not plan a single detail of his death. Expect to juggle many roles. As adult child caregivers, we have to take on lots of tasks, some willingly, some not so willingly. With my parents, I have been a chauffeur, I have been a medical researcher, I have been a financial interpreter, a legal interpreter, I've even been an eBay sales associate as they attempt to downsize. But one of the tasks that I would never take on for my father was personal care. I made a decision, I set boundaries, I would demand services for him, but I would not do anything that would have shamed or have embarrassed him. Expect to be able to and required to ask other people for support, both paid and non-paid caregivers to take on the roles that you cannot or will not. Chronicle the journey and share it with others. Caregiving is an arduous process. Aging is not for sissies, but there will be joy. Take photographs. One of my regrets is after my father died, our family realized we didn't have a single photo of my mother, my father, my brother and I for the last 14 years. My father was always the photographer. Create stories, share them with others. When my father came out of surgery, the neurologist asked him three very predictable questions to ascertain his cognitive functioning. What's your name? What year were you born? And who is the President of the United States? Knowing that my father was a lifelong Republican, I held my breath. He wrinkled his nose, he looked at the neurologist and he said, Barack Obama, unless I've been asleep for a very, very, very long time, even after my father's death, this is a story that my family still shares because sometimes laughter really is the best medicine. There is no one who has said this more succinctly nor more prophetically than Rosalind Carter. There are only four kinds of people in the world. Those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers. Thank you.