Every day, 45 million Baby Boomers are taking care of their elderly parents. That’s a daunting statistic, especially when you consider most are holding down a job, caring for their own children, and completely unprepared for the stark realities of end of life issues. There are handbooks on what to expect when you’re expecting, but nobody wants to talk about what to expect when the roles are reversed – when the parent becomes the child – and it can happen so suddenly.
Stefania Shaffer, author of 9 Realities of Caring for an Elderly Parent: A Love Story of a Different Kind suddenly found herself a statistic when she received a phone call from her seemingly healthy, alert and buoyant mother, requesting that Stefania come for a long-overdue visit. By the end of the first weekend, it was evident Mom could no longer manage to be in her home by herself; the house was in ruins and so was Mom. It was enough to make Stefania uproot her own life to fulfill Mom’s wish to live out her years remaining in her own home. Shaffer imagined they would have fun until the end when she would go to sleep with a smile on her face. “Death is very clever,” says Shaffer, “and I should have been more creative in my thinking. It was five years from my arrival, when my mother died at my side.”
Like most sudden caregivers, Stefania didn’t know what she was agreeing to when she took on the job of caring for her elderly parent. If only someone had shared with her the realities this job would entail. In her second book, 9 Realities of Caring for an Elderly Parent: A Love Story of a Different Kind, Stefania offers a playbook to prepare the adult child for each of the nine realities essential to managing this journey, from de-cluttering the family home to grief counseling for the adult orphan.
Although it tackles a difficult topic, the book is as entertaining as it is helpful, sharing the touching and often heart-wrenching anecdotes and invaluable lessons learned from a daughter caring for her mother as she approaches the end of her life. This surprisingly funny, compassionate, and daunting account of what to expect if you are the adult child coming home to care for your elderly parent is a step-by-step companion for all who find themselves in charge of a parent’s well-being, making it an essential playbook for the millions of baby boomers about to face the toughest challenge of their lives.
ALIVE Magazine: What were the thoughts that led you to share your experience caring for your elderly mother?
Stefania Shaffer: I could not escape the nagging feeling that I wished someone had sat me on a stool to share with me the realities of what goes into caring for an elderly person. There was a lot to manage even before my mother fell into decline. The constant worry of what if the next fall resulted in a head injury or a broken hip really made me aware of how fragile seniors can be. It never occurred to me I would be dealing with home repair issues typical for old houses, plus shuttling back and forth to doctor appointments, and more importantly, spending years sleuthing through 85 boxes in the garage to figure out where her assets were. I finally felt compelled to demystify what goes on behind the scenes of elder care so other Baby Boomers will know upfront what lies ahead.
AM: What were some of the most surprising realities you learned, aside from home repair?
SS: I learned that seniors are on rosters of rotating doctors that require nearly weekly appointments for some kind of check up. Whether it is for a hearing appointment, or bone density test, or blood work, or eye doctors, it is constant running, much like what I imagine moms do for kids with after school extra-curricular activities. I learned that a bed bound person requires diapering, something I hadn’t done since I was a babysitter for kids in our neighborhood thirty years earlier. I learned that without long-term health insurance, the night nurse duties fall to you. I also learned that not everyone wants to visit your elderly parent when they are sick because it is too painful—for the visitor. Some people expressed to me that they just wanted to remember my mom the way she was before her decline. But hearing is the last sense we lose before death, so patients know who has come to visit.
AM: What is the biggest problem that elders face, in your opinion?
SS: Elders who cannot see very well, or hear very well, or are unsteady in their balance are particularly vulnerable, but they can still feel fiercely independent, as my mom did. Ninety percent of elders in surveys through AARP research will say they want to remain in their own home, but if they do not see well enough to cook, or hear well enough to answer the door or telephone, it can be very isolating. It is also very taxing to maintain upkeep on a decades old home. A senior needs regular contact with someone who is laying eyes on the scene inside to determine what the senior is eating, what kind of condition they are living in, and what kind of personal care they need. A senior who no longer drives is even more reliant on a steady stream of supporters.
AM: How would one be able to determine if their parent is still safe in their own home?
SS: There are specific warning signs in a checklist from the Aging Solutions website with the top ten questions you need to know the answers to if you want your senior to be safe at home. Chief among them, does your elderly parent turn on the stove and walk away? My mom would take naps while pots sizzled and hissed melting upon burners hours later. Does your elderly parent know how to exit the house and return? Does she know how to make an emergency phone call? Is your elderly parent able to prepare meals? My mother was spoon-feeding herself from a jar of Ragu and calling that dinner. Does your parent look clean or is she wearing a threadbare robe with coffee splatters and Ragu drippings all up and down the front? These are things you will not know if you are long distance or not within those walls. There was a lot my mom was trying to hide from anyone who wanted to visit, so she would wait on the bench outside for her friends.
AM: What are the first steps to take as the adult child coming home to care for an elderly parent?
SS: Step 1: Check to see what legal documents are still not in order. The starter kit of four includes: an Advanced Health Care Directive, a Power of Attorney for Finances, a Will, and a Trust.
Step 2: Determine how safe the home is by looking for tripping hazards, sharp corners on tables in case an elderly parent falls down, and analyze the meal prep pattern and medicine routine. Is the elder able to see well enough to self-medicate or will he accidentally overdose because he can no longer read labels?
Step 3: Know where the assets are held. Many seniors hide money in the house. I wish that all of our assets had been in one place, with a tidy little bow around them. I would have avoided the scavenger hunt I endured for years gaining access to many different safe deposit boxes, and poring through two hundred empty cartons of checkbook boxes after the first one I un-lidded had fifty dollars tucked away.
AM: How did you share the role of caregiving with your siblings?
SS: I wish our family had even roles and worked out a schedule with alternating days of caregiving. I found that once my siblings got comfortable with the fact that I was there, they knew they didn’t have to be. Some families are able to really pull together in a crisis. My siblings were limited in what they could do, and fortunately, I suppose, they entrusted the job to me.
AM: What made you think you could do this job instead of putting your mother in assisted care?
SS: I had no idea what I was saying yes to. Looking back, no one says yes to Firefighting or Nursing or the ARMY without asking a few questions up front about what a typical day at work is like. I would have still said yes, but I would have known better what the job entailed. Organizing and planning has always been my strength, even from an early age when elementary teachers would allow me to help them after school.
I have also gained experience from tackling classrooms and donation centers that were dumpsites until I overhauled them by purging and reimagining a thoughtful staging space. I also knew my mother’s words were ringing in my ears from a lifetime of hearing, “If you put me in a home, that will be the surest way to get rid of me.” I wanted to fulfill her wish that she remain in her own home.
AM: Looking back, how did you manage day to day, not knowing how long the decline would last?
SS: The scariest part was wondering if she would outlast her money. I was so grateful to have the support of an incredible Hospice team and then my mom’s health took an upswing, which meant Hospice was preparing a temporary exit. This was my greatest fear because I had no idea how to care for a bedbound mother whose entire life’s goal was to die in her own home. My focus became to make sure she did not die alone. I became overanxious about following through on every idea I had to make her more comfortable. I never procrastinated because I never knew if today would be her last day. It got to the point where I was afraid to turn my back to go down the hall for fear she would be gone when I returned moments later.
AM: Your mother, in essence, became your child. What kind of mother would you be?
SS: I would have been a very nervous mother. Maybe this is how most first-time mothers are with newborns. From the beginning, my sense of urgency revolved around her falling and breaking a hip. Then my anxiety ramped up when warning signs began to appear for onset dementia; I did not know how I would be able to care for someone with Alzheimer’s. Then, trying to protect her from her horrible hallucinations that left her petrified made me cry because there was nothing I could do to help. In the end, I comforted her with reminders that she is home, she is safe, and I am here. It’s all I kept repeating to try and soothe her. I am so grateful I did it. It was my privilege. But, I don’t think I will ever again have the kind of energy required to give to someone else in that same way.
AM: What are you most grateful for after spending the last five years of your mother’s life together?
SS: I am so grateful I came home. We needed to mend a rift. I am so grateful I got to see all the qualities my father always said made him fall in love with her. I discovered her sense of humor and wish I was half as funny. Had I not come home, I never would have met the man who became my husband, whom she affectionately termed her “Son-in-Love.” Those years of our pairing were what built our bond as the Three Musketeers. I am so grateful I got my wish that she not die alone. I am so grateful I have no regrets.
AM: What would you say to a busy adult who is faced with the same prospect of moving back home?
SS: Get ready for the single hardest job you have ever known. It will be what Hospice nurses will liken to post-traumatic stress syndrome for war-torn soldiers who saw the worst of the battle from the frontlines. When you are the on-site caregiver, it is a completely different experience than being the relative who pops in from afar on occasion. Be prepared to take the brunt of family members’ emotions because death and money bring out the worst in family dynamics, even for families that are not fractured to begin with, like mine. If you are part of the “sandwich generation,” wherein you are simultaneously raising children at home while caring for an elderly parent, be prepared for marital strain, which is true for those of us who weren’t also taking care of children at home. Get organized. Preparation prevents regret. This will be your greatest privilege.
9 Realities of Caring for an Elderly Parent is available on Amazon and at www.stefaniashaffer.com