Hundreds of times I have watched hesitant families fearfully move their parents into long-term care. Yet only when I began my personal journey of relocating my own mother did I completely understand the anxiety and guilt that accompany this move.
For the past twenty-six years, my husband, Terry, and I have served as cofounders and directors of Vista del Sol Skilled Nursing and Assisted Living Facility in Los Angeles. Over the years, I have tried to anticipate families’ needs to make transitions as smooth as possible. I have been guide, administrator, confidante, but none of these roles prepared me for moving my own mother.
At eighty-five, my mother walked more unsteadily as each day went by. Alzheimer’s had taken her recent and long-term memories; Mom literally lived in the moment—no yesterdays to draw from, no thought of the future. She did take great pride in having reached eighty-five years of age and would remind me of it every fifteen minutes.
Moving my mother out of the apartment she had lived in for forty years was the responsible, conscientious, dutiful decision. Still, it felt strange. Until I began this personal journey, I truly thought I understood what families were going through. For years, as I kept silent watch over apprehensive daughters and sons, I would think, They must be having a tough time arranging the move. Little did I know. Relocating Mom opened new thresholds of guilt, fear, and anxiety. Only as I lay awake nights wondering if I’d thought of everything—would she be happy, would she miss her home, would she be angry at me—did I truly know what it meant to move a parent into long-term care.
A parade of details needed attention. After deciding the date for my mother’s move, I arranged for the phone and cable TV to be connected and coordinated the furniture transfer, personalizing her room before she arrived. I chose clothing she would need, decided which pictures would have the most meaning, and arranged for Bluey, her parakeet, to be carefully transported.
As I checked off task after task, I forgot I was a registered nurse and a facility administrator. I was a daughter, an adult caregiver. Every shred of love, fear, and regret I had seen repeated in the tired, confused faces of families who had come to my office, I now felt about moving my own mother. All of us wonder if we’re doing the right thing.
It Doesn’t “Feel” Right
I know I made the right decision. Since a live-in daily companion could no longer address her escalating medical needs, Mom was no longer safe at home. As she grew older, the danger of a medical emergency had shadowed her days. Now, she would be safe and receive twenty-four hour professional care. Knowing that a licensed nurse would evaluate her medical needs twenty-four hours a day brought me a deep sense of relief.
Still, there were times when it just didn’t feel right. The guilt we feel about moving a parent into long-term care is a normal part of the process; I see it in almost everyone who visits my office. Though I wasn’t personally surprised by the guilt, it upset me all the same. These thoughts raced through my mind:
Maybe I can still make it work for Mom at home.
Can she live with my family?
She raised four of us; now we can’t take care of her?
Is it a good idea to uproot my mother from familiar surroundings after forty years?
What would my father say about this decision?
Strangely, it was my father who taught me when and how to make the responsible choice for my mother.
My Father Stayed at Home
In 1990, my seventy-eight-year-old father was diagnosed with Alzheimer’s. During the next three years, Dad’s cognitive abilities declined rapidly, recent memory going first, followed by poor decision making. Soon, he required assistance with medication management, dressing, bathing, and toileting. Twice, he wandered away from home, frightening the whole family.
“I can take care of your dad at home,” my mother pleaded with me. “Just give me a little help, and we’ll be fine.” The five-hour-a-day help turned into eight hours, followed by twenty-four-hour help, seven days a week. My father, a large man even though he had lost a lot of weight, required two people to transfer him in and out of a chair. He needed total nursing care.
Following his express wishes, we allowed my father to die at home. The decision was made out of emotion and guilt; at the time, I wasn’t up to guiding my mother about what was really best for Dad. Although I was confidently advising families every day of my working life, when it came to facing my own family situation, I faltered. I was still my parents’ child.
Most end-stage disease requires enormous medical, physical, and emotional attention. This kind of care is all-consuming, requiring medical assistance on a level too difficult to imagine until you have been there. In the next months, I logged many personal hours at my parents’ apartment. Though my husband and son would have been happier if I had been home more, I went ahead and kept my promise to my dad.
I called in every IOU I had earned in the long-term care industry. The home health agency visited my father more frequently than Medicare allowed. During the last weeks of Dad’s life, his skin began to break down. It didn’t warrant Medicare reimbursement, but the wound nurse came anyway, as a favor to me. I built a nursing home within a home. I assembled a staff of four loving, hands-on caregivers for one-on-one twenty-four-hour care as my father lived into the end stages of Alzheimer’s disease. As an RN specializing in geriatrics and long-term care, I knew it was not enough.
Dad died August 28, 1993. Through his dying process, he taught me as only he could how best to take care of my mom during her last years. Any convictions I had harbored about the sanctity of dying at home, about keeping promises out of guilt, were gone. Despite my professional expertise and contacts, Dad would have received better supervision and more comfort at a good long-term-care facility. And I would have had the time to sit with him and hold his hand.
Five years later, I again found myself making health-care decisions for a parent, but this time I felt my father’s guidance. Mom needed more care than I could adequately arrange in her apartment, and the appropriate time had arrived to relocate her into a long-term-care setting. The words I have repeated to families for three decades finally came home to me: You are still your parent’s advocate and champion, vitally engaged and needed more than ever. You will never relinquish the emotional care of your parent, but you can relinquish the medical care to experts.
An Emotional Roller Coaster
We are all pioneers in this strange frontier of caregiver and decision maker for parents. The learning curve is steep. Just as children do not come with instructions, neither do parents. In hundreds of interviews in my office, I have consistently heard that caregiving for an aging parent was “not supposed to happen.” Mom or Dad would go quietly at the end of a long and happy life, preferably during sleep. The overwhelming role of caregiver was not something our generation saw coming, and so we find ourselves without a plan.
Much of the time, you may feel capable of meeting this caregiver challenge, able to make necessary decisions, and willing to offer emotional and financial assistance to your parents. Yet, at times, the fear, sadness, guilt, and anger can paralyze you. These disturbing feelings show up uninvited just when you thought you had them under control. Negative reactions are normal, but you must not let them deplete your strength. Whether by choice or by default you find yourself the designated caregiver, you will have signed on for the most challenging role of your life. It is an honorable position—never lose sight of that. Be prepared to make mistakes and wish you had done things differently. If you are patient and kind to yourself, both you and your parent will benefit.
Commitment Brings Peace
Walking with your parents through the final journey, whether it is months or years, can be a healing, loving time, a time for mending fences and reaching a deeper understanding. Your commitment to their care, safety, and comfort is your last and greatest gift to them. In turn, it can bring you a deep, abiding sense of peace after they are gone.
To everything there is a season. My mother lived a long and contented life at home; then, she was safely settled in the proper care center. As her primary caregiver, I was committed to providing her with compassionate care appropriate to her medical and social needs. Placing her in long-term care where I could visit with her every day was the most responsible choice I could make for her. This was the lesson my father taught me. Every time I think of his last gift to me, it brings me peace. I have written this book to share that peace with you.