When I was sixteen, my mother used to say to me, “When you’re a parent, you can make the rules.” At fifty-two, I was making the rules for her and I didn’t like it as much as I thought I would. Our roles gradually reversed as I found myself taking the following actions:
None of us expects to become the decision maker for our parents or to care for them as they grow frail. Having our parents depend on us is new. When the inevitable role reversal, or role transfer, takes place, it can be a complex and awkward adjustment. Although you may always feel like their little boy or girl, the burden of parentlike responsibility and decision making is gradually transferred to you—hopefully with their consent. Regardless of how sensitive and thoughtful you are, this process is not likely to go smoothly. Neither you nor your parents will be quite sure how to react. Just as they were unable to solve all our problems, so we will be unable to solve all theirs.
Ginger, Max, and Linda. Ginger and Max arrived in a taxi from the airport to meet their sister, Linda, at my office. Three weeks earlier, their father had died unexpectedly, leaving their eighty-eight-year-old mother alone. “We’re not prepared to leave Mom on her own,” Linda began. “She and Dad lived in the same house for twenty years, but it’s too big for her now. Ginger and I feel it’s time for Mom to sell the house. We think assisted living would be perfect for her.”
As they spoke, I began to suspect that although her children were springing into action with the best of intentions, their mother had not been consulted. I asked them if this was so.
“That’s why we came to talk with you,” Ginger answered. “After we see a few facilities, we’re going to talk with Mom.”
“I feel your sense of urgency,” I began, “but the rush-to-fix attitude, although well meant, may unintentionally make your mother feel she has no control over her life. As adult children, we may rush to make decisions for our parents so we can feel that everything is settled, but as long as your mom is competent, it is her decision to make. If you can help her maintain control over her current lifestyle, it will strengthen her independence and in the long run benefit each of you.”
“But we’re worried about Mom,” said Max. “We don’t want to be intrusive, but she just can’t live alone. What about her finances? Should she still be driving? Isn’t it our responsibility to step in? Ginger and I don’t live in the area, so we want to leave Mom safe and settled.”
“Max,” I said, “your concerns are valid, but making all her decisions for her may not be the answer. Find out what is important to her. Does she want to remain in her own home? How much help will she accept? Does she want to keep driving? Talking about these issues will let your mother feel that when a change is necessary, it is her choice rather than yours.”
Adult children feel overwhelmed and trapped by enormous life changes. So do their parents. Adult children feel sad and anxious about the future. So do their parents. Parents fear losing their independence. Adult children fear the burden of caregiving. If you can recognize that you and your parents are going through a similar process, the shared fear and uncertainty can build a stronger bond between you as you help one another answer questions together.
Role transfer is difficult for elderly parents for many reasons. Not only do they often experience loss of control over mental clarity and physical ability, but since they are used to seeing themselves as caregivers and decision makers, they also face a loss of identity. They may now have to rely on you to carry out their life decisions. Most disconcerting of all, they may have to make new living arrangements, after being in the same home for decades.
A Difficult Transition for an Adult Child Caregiver
There are many reasons for the emotional roller coaster caregivers go through.
1. We are not prepared for this. Michael lived in San Diego and drove to West Los Angeles every four weeks to visit his eighty-six-year-old mother, Betty, who lived alone. “When I visit Mom,” he told me, “I take her out to an early lunch. I’m usually back on the freeway by three-thirty before the traffic hits.” Michael had arranged for a companion named Maria to visit Betty twice a week, so he thought things would be under control while he took a two-month sabbatical in Italy. “When I returned,” Michael continued, “the house was dark and the curtains were pulled. Mom looked awful and didn’t know who I was. I called Maria and asked what was going on. Maria responded that following a doctor appointment three days earlier, Mom told her she no longer needed to take her medication for diabetes, so Maria removed them from the pill container.”
Michael rushed his mother to an emergency room. “Stella, her blood sugar and her blood pressure were off the charts,” he said. “But her confusion scared me the most. She wasn’t even speaking in complete sentences. The doctor looked at me accusingly and said, ‘Michael, you know your mother has suffered from pinpoint strokes for two years.’
“I didn’t even know what pinpoint strokes were,” said Michael. “I asked the doctor why he never bothered to discuss it with me, and he answered, ‘I spoke to your mother several times about this. She assured me you were informed.’ Stella, Mom never told me. She’s always swept bad news under the rug.”
Within forty-eight hours, Betty’s blood sugar and blood pressure were stabilized. Her confusion and disorientation were another story. “They’re ready to send her home,” Michael told me, “but how can Mom go home? She doesn’t even know she’s not home now.”
Michael had never considered his mother living anywhere but in her own house. “How can I make decisions for her? She never told me she was in trouble. How was I supposed to know?” He clenched his jaw in an attempt to control his emotions. The pressure of seeing his mother in her frail, dependent condition and becoming her decision maker was overwhelming. Michael was not prepared.
2. We feel trapped by new responsibility. Millions of us who travel down this road have felt trapped. For many, the past two decades have been spent caring for dependent children. Now we find that caring for a dependent parent lies ahead, perhaps for another decade or more. This is not how we pictured our retirement.
My own role transfer began slowly. While every week added another small responsibility to my role as my parents’ caregiver, our lives remained relatively the same. A phone call changed everything. “Stella, you’d better come over,” my mother said. “Something is wrong with your dad.”
Recently retired at the age of seventy-eight, my dad was a self-employed optician and worked six days a week. His work gave him a sense of purpose. I had quipped, “Dad will die the day he stops working.” Four months after he retired, things changed, but not the way I expected. Dad remained physically strong; it was his brain that was dying.
When I arrived, my father was sitting on the couch, crying, a look of fear in his eyes. For the first time, he looked old to me. “I don’t know why I’m crying,” he said. “I’m scared. Your mother doesn’t understand, but I’m scared.”
At that moment, my role as a child was pulled out from under me. None of my years of professional experience had prepared me for this. My emotions during the next days ranged from sadness and anger to panic and fear of being trapped.
This isn’t right, I thought, This shouldn’t be happening to my dad. The sudden frailty of the man I had adored all my life was bewildering. I should have known better; I have seen clergy, psychiatrists, and even bereavement specialists immobilized when their parents’ health failed. I had thought, How could this be? These people are the experts! But education and experience are no buffer for this life-changing moment. It is impossible to understand until it happens to you.
3. We fear our parents’ anger. Harvey, ninety-three, had been a controlling father figure to Sandy all her life. “He demanded respect,” Sandy said, “and he got it.” As an only child, she was terrified of making decisions for her father. But Harvey, who managed his own estate, started to make financial mistakes. Then he had two car accidents and forgot to pay his medical insurance, which took weeks to resolve. When Sandy offered to help, her father made it clear he would not turn over any responsibility to her. Finally, Harvey began losing weight, stopped answering the phone, and believed people were after his money. Managing his financial holdings remained important to him, although he was no longer able to do it responsibly. When Sandy came to see me, she was in turmoil, walking an uneasy line between offering assistance and taking charge. “If I do nothing, things will get worse. But if I bring up his finances, he gets angry. What do I do now?” she asked.
“You need emotional support, Sandy,” I answered. “A place to vent your feelings. Have you considered joining a support group?”
“How would that help me deal with Dad?” she asked
“Support group members have been in situations similar to yours,” I said. “By sharing your stress and confusion with the group, you will find that you are not alone. Many people are not comfortable sharing frustration and anger with family members and friends for fear of being judged. But in a support group, it’s easier.”
When I saw Sandy two months later, she had joined a support group.
“It was a good feeling to know others were going through a similar rough time,” she told me. “I don’t feel alone anymore. Not only have members shared what they’ve done right, but they were also brave enough to share what they’ve done wrong. We give each other advice and laugh about our frustrations. I don’t feel as guilty anymore.”
As Harvey’s condition continued to fail, he required a twenty-four-hour caregiver and Sandy began making decisions for him. “He still gets mad at me,” she said, “but I know I’m doing the right thing. The group has taught me not to personalize his anger. I’ve turned into a better caregiver.”
“I” Statements. Simone, a Florida attorney, hired a geriatric-care manager to help her care for her ninety-year-old mother, Jane, who lived in Los Angeles. She’s the reason I moved to Florida,” laughed Simone. “Mom has a very strong personality, and I’ve never been good at dealing with her.” Jane had been living at Sunset Village Assisted Living until she fractured her hip. Now temporarily in a nursing home, she did not like being told what to do and was becoming withdrawn and depressed. “I’ll never get out of here,” she told her physical therapist. To return to her beloved Sunset Village, Jane needed to be able to use a walker, but for two weeks she had been refusing to see the physical therapist, saying she was too tired.
“Do you think Mom will ever return to Sunset Village?” Simone asked me. “We can’t pay for both places indefinitely. But if I tell her she’s running out of money, she won’t listen to me. She’s very stubborn.”
“Simone,” I said, “when you address your mom using ‘you’ statements, it automatically sets her up to argue. Try using ‘I’ statements. Try saying, ‘Mom, I’m worried about your finances. Keeping your room at Sunset Village and paying the nursing home is draining your savings. I’m concerned you won’t be able to live where you choose if your money is gone. If you are not walking in three weeks, I need you to let me know that I should let the room go at Sunset Village.’ It may cause her to respond to you as a daughter in need.”
Phrased this way, it became Jane’s decision, and Simone wasn’t placed in a position of dictating terms to her mother. After three weeks and many hours of physical therapy, Jane was able to return to Sunset Village.
I have repeatedly seen “I” statements produce a win/win situation. Adult children are able to help their parents without disempowering them. Parents feel more control making their own decisions. Here are more examples of “I” statements:
4. We may not be able to go to our parents for advice and approval. A successful children’s book author told me, “My latest book has been chosen for a prestigious award. The story is based on Mom’s life, but when I showed her the book and expressed my excitement, she wasn’t able to grasp the significance. She had always been my biggest cheerleader, encouraging me to be a writer, and I guess I just wanted her to be proud of me.”
“In his days as a real estate attorney, my dad gave valuable advice to hundreds of people,” Ben, a professor of anthropology, told me. “Whenever I needed information on buying or selling property, I always went to him. My wife and I are in the middle of selling an apartment complex, and it’s getting complicated. It hurts that I’m not able to talk things over with him anymore.”
When we were children, our parents guided our every decision. As we matured, their advice, welcome or not, provided a sense of security. Although they may not be the sound source of advice they used to be, remember, it still means the world to them to be asked their opinion; it gives them a sense of value. Even in a state of dementia, they will feel needed and appreciated. It is a kindness and courtesy not often extended.
5. Our parents’ aging mirrors our own. “I’ve come to terms with my father dying,” began Ken as he sat in my office. Two weeks earlier, his eighty-six-year-old father had had a stroke. “What’s scares me is looking at Dad lying in the hospital bed; I can’t stop thinking, That’s me in thirty years.”
When roles shift between you and your parents, you begin to identify with them and face your own mortality. Will you develop dementia as your mother did? Will your husband suffer multiple strokes as his father did? Will you lose your vision to macular degeneration? Will your husband need open-heart surgery? A glimpse of the future is one of the last lessons your parents teach you.
Fears of the Older Parent
“My husband and I need to feel in control. It’s our bodies, our lives, our minds. Why does my daughter think it’s time to take control of us?”
—Amelia, age 78
To understand the fears and concerns our parents experience, I went to the source. As one elderly resident put it, “So you want the answer from the horse’s mouth. Well, this filly ain’t what she used to be.” These are the six biggest fears residents have shared with me.
Claudette. At eighty-nine, Claudette is very engaging and outgoing. “My biggest fear,” she said, “used to be dying before my husband; the children would never have known what to do with him. Now my big fear is major illness—I’m chicken. So far, other than having my children, I’ve only been in the hospital for gallbladder surgery. I told my family, I don’t want to be hooked up—no tubes! If I’m really honest, my biggest fear isn’t dying, because that will happen no matter what I do, but I don’t want to linger, be a burden to my children, maybe even cost them money. That would be awful.”
Charlie. Charlie, eighty-seven, is a salty, occasionally aloof individual, who has traveled and lived in many countries. Initially, Charlie said his biggest fear was outliving his money. But as we kept talking, he added, “My daughter is raising three children alone. All she needs is one more burden. That’s why I moved to assisted living without much of a fight. She has a full plate, as it is.” When I asked him if he was afraid of death, he answered, “Nope, but I am afraid of losing my mind.” When we started to talk about dementia, Charlie ended the conversation.
Beryl. Beryl is a tall, elegant woman who used to be a fashion model; even at ninety-three, clothes and fashion are extremely important to her. She has a son, George, who hired a geriatric care manager named Sally to act as liaison between him and Beryl. Sally visits Beryl weekly to monitor her well-being and take care of any personal needs she may have. Beryl shared very private fears with me. “My son, George, lives in Europe and travels extensively. He loves me, probably a lot, but he’s never here. I am really afraid of being alone and dying alone. I’ve had a very full life, I traveled, and I was married twice. Did you know I was also a pharmacist? I’ve had many friends but have outlived them all. When I die, no one will know who I was. That scares me. Being alone is no good.”
Begin a Dialogue
Our parents have experienced many losses—the deaths of a spouse, siblings, and friends—and then their own physical decline. We can only imagine the fear and uncertainty they feel. As you assume new responsibilities and share decisions with your parents, there will be a few bumps in the road. Keep in mind the difficult emotional journey they are taking. As soon as possible, begin a dialogue with your parents and share your concerns. They may not want your help now, but as their health and abilities decline, they will need it. Talking it over ahead of time will take the pressure off the eventual transfer and make it a more comfortable process.
As our caregiving roles change, we will find our parents in need of guidance, decision making, physical assistance, possible financial support, and unconditional love—all of which we will offer. But as we perform parentlike tasks for them, and as life gradually strips them of everything they have, we should never take away the respect and honor due them as our parents. A guide we may become, but a substitute parent—no.