“It’s me again…Bob Sherman,” said a tentative voice on the phone. Bob had visited our nursing home twice, once to tour the facility, and again to gather more information. “Can you meet with my sister Jen and me tomorrow?” he asked. “We’re ready to make arrangements to admit my mom.”
Promptly at ten A.M., Bob arrived alone. He reminded me that Ann, his eighty-nine-year-old mother, had lived by herself for the past twenty-eight years. During the last two years, she had required more and more help from him. According to Bob, “Mom and I were doing fine. Then suddenly, my unpredictable sister Jen shows up and wants to take over Mom’s care. But she hasn’t been involved in Mom’s life for years.” Bob looked at his watch. “It’s ten twenty-five—she’s never on time.” When Jen arrived minutes later, the tension between the siblings was palpable. It was difficult to find an issue they agreed on. Jen wasn’t even sure that moving her mother was a good idea.
“She’s going to move, Jen,” Bob said tersely. “She needs more care than you know.”
“Then I want Mom to see her room before she moves in,” answered his sister. “She should help decide what furniture and pictures she wants. I’ll bring her tomorrow.”
The following morning, Jen and her mom arrived as planned. As the two of them looked around Ann’s new room, Jen asked, “Mom, what about a television?”
“Your brother has one for me,” said Ann.
“Mom, that’s an old TV. I’ll buy you a new one. The color and sound will be much better. You’ve chosen too many pictures, Mom; we need to narrow them down.” Remembering a favorite picture her father had given Ann many years ago, she said, “There’s one in Bob’s living room, Mom. I’m going to tell him it really belongs here with you.”
“I wish you two would get along,” sighed Ann. “Everything is such a struggle. I feel like a referee.” Looking at me in exasperation, she shook her head and said, “Siblings!”
Research consistently shows that in a majority of families, one member is designated primary caregiver and decision maker. As a family begins caring for an aging parent, traditional roles begin to shift. Rivalries hidden for many years resurface. Brothers and sisters who had good relationships find themselves at odds in matters of caregiving. I have seen families literally torn apart over the care of an aging parent.
Initially, some jostling for position in the family hierarchy may take place. Adult children may volunteer for caregiving duties and then later decline. But all family members must acknowledge what they can and cannot do. Ultimately, one steps up to the plate. Sometimes geography is the deciding factor. Occasionally the parent will decide.
If the youngest child becomes the primary caregiver, the “baby” is suddenly the leader in the family dynamic, telling older siblings what to do. This reversal can upset the traditional family order and cause considerable upheaval among the other siblings. The entire family should attempt to remain a team whose job is to agree on and carry out a plan that delivers quality care for the remainder of the parent’s life.
Be Part of the Solution, Not the Problem
“Last evening, my sister Lisa stopped by as I was racing to my fourth grader’s Back-to-School night,” lamented Jennifer. As soon as Lisa saw the TV dinner I had given Mom, she started in on me. ‘How can you feed Mom this junk?’ she exclaimed. ‘She should be eating organic food.’ I was rushed, tired, and in no mood to defend myself. Once a week, Lisa visits to critique my caregiving, but she has never offered to shop, cook, or take Mom to the doctor.”
Siblings not in the primary caregiving role deal with their own set of emotions. Some feel left out. Others are jealous about not being the “special” caregiver. Still others are sure their parent’s care is not handled properly, yet are more comfortable instructing the caregiver on what to do while avoiding personal responsibility. Whether Lisa’s remarks were a criticism of Jennifer or just a need to feel involved in her mother’s care is not the issue. What matters is that her remarks did not contribute to her mother’s care.
If you are not the primary caregiver, do not wait to be asked for help. For many reasons, caregivers are often reluctant to seek assistance. If you do not agree with the way your sibling is caring for your parent, decide whether you would want to step in and take over the caregiving responsibility. If you don’t have the time or ability to provide the care yourself, you must accept your sibling’s capabilities.
What You Can Do as a Secondary Caregiver
If you are a secondary caregiver not contributing physical care, find out what the caregiving costs are. Needless to say, monetary help is almost always needed and will certainly be appreciated. If you can’t contribute money, offer a service such as laundry, housekeeping, or doing your parent’s taxes. Acknowledge and show appreciation for the primary caregiver; positive communication between siblings can lighten difficult days. Always make sure the caregiver gets days off and vacations. That may mean you will have to be willing to sit in for her. Should the primary caregiver’s health fail, it will throw the whole family into turmoil. (See Chapter 9, Burnout.) Thank-you cards and phone calls to show appreciation mean a lot to a busy caregiver. If your family has hired full-time or part-time caregivers, thank-you gifts will show you recognize their helpful efforts as well. Be creative. And if you are arriving from out of town to see your parent, remember that the situation is working, or you wouldn’t feel free to “just visit.”
Conflicting Directions to the Health-Care Staff
Marlin, an assertive movie producer, and Loretta, his equally assertive younger sister, were arguing as I walked into my office. “My brother and I are trying to make decisions about Mom’s medical care once she joins you,” Loretta began. She and Marlin had visited with me the previous week regarding their eighty-eight-year-old mother, Theora. Although Theora had been living on her own in a condominium for the last three years, both siblings agreed their mother now needed more help and supervision. However, their views differed on how this was to be accomplished. Even the date of admission was a point of dispute.
“Mother suffers from rheumatoid arthritis,” said Marlin. “When she joins you, we’d like the staff to ask the doctor for a routine order of a pain medication.”
“No,” Loretta objected. “I don’t want Mom ‘drugged out.’ Those medications aren’t good for anyone.”
“But I want to take Mom out on Sundays,” said Marlin. “If she’s in pain, she won’t go. And family outings are good for her.”
“Mom shouldn’t even leave the facility for at least a month,” Loretta stated. “She’ll need time to acclimate to her new environment.”
Although Marlin and Loretta both cared about their mother, each gave the nursing staff contradictory dos and don’ts for her care. Making the facility a battleground for unresolved issues between siblings can jeopardize a patient’s health care. Whether there are two siblings or ten, choose one to act as a spokesperson for the family. Health-care professionals need to clearly understand family health-care decisions, and if they receive conflicting calls from family members, their cooperation may diminish.
It’s Not About You. It’s About Your Parent
“My sister Claire and I have had little to do with each other for years,” Jaimie confided in me. “Before Dad died ten years ago, he provided for Mom financially, and I have pretty much watched over her since then. In the last few weeks, Mom has fallen three times, and it’s just not safe for her to live at home anymore. Mom and Dad appointed Claire and me as coagents having power of attorney for health and finances. That requires us to act jointly. Even though Claire and I never agreed on much, we have to make arrangements for Mom’s care.”
“Before you make any final decisions,” I cautioned Jaimie, “your sister should be with you. Let me give you a tour of the facility. Then come back and see me with Claire.”
One week later, Claire arrived first. She was soft-spoken and comfortable exchanging information with me. On Jaimie’s arrival, however, Claire stiffened. At first, each sister referred to the other in the third person. Claire was concerned about spending too much money for her mother’s care, while Jaimie’s philosophy was, “It’s her money; spend it.” Claire believed in conservative health care and that no heroics should be used. More proactive, Jaimie said she would consider certain medical procedures for her mother.
“You always want to be the decision maker,” stammered Claire, “even though I’m the oldest.”
“If you’d been around more,” Jaimie shot back, “I wouldn’t need to make all the decisions.”
At that point I broke in. “The relationship you two share won’t be resolved here today. The purpose of this meeting is your mother’s care—she is the important one. Since you both took time to come to see me, I believe that at some level you are ready to work together.”
Gradually, Jaimie and Claire began to understand that their relationship was secondary to their mother’s well-being. As I worked with them on financial and health-care issues, some decisions were made easily, while others required flexibility and negotiation between the sisters. Months later, Jaimie admitted to me, “Mom and Dad knew my sister and I were different as night and day, but they also knew that we could cooperate to take care of them if we had to. We still have our ups and downs, but working together as caregivers has made us closer.”
The Primary Caregiver Can Feel Resentment
If you are a primary caregiver, prepare to feel resentment no matter how supportive your siblings are. It is normal to occasionally wish others were responsible instead of you. When you experience this resentment, try to let it go. Resentment becomes a major factor influencing what you do and how effective you are; it drains energy, immobilizes you, and takes up valuable time. You will need to conserve your mental energy and strength for the difficult tasks ahead.
The Lone-Wolf Sibling
“My brother isn’t interested in helping.”
“My sister never had a close relationship with our parents.”
“My brother just said, ‘Tell me when the funeral is.’”
“My brother sends money begrudgingly,” said Roseanne, “but other than that, he’s not there for our mother at all. I get so angry with him for not helping me when I know he could! I’m not the only child!”
“Roseanne,” I asked, “would you do things differently if you were an only child?”
“Probably not. But I wouldn’t feel so resentful,” she answered.
“Then think of yourself as an only child,” I urged her. “Thank your brother and go on with your life, because anger will only deplete your energy and productivity. Let your brother find his own comfort in the limited support he provides.”
The hands-on caregiver makes adult decisions and difficult choices for her parent, experiencing parent-child role transfer on a daily basis. How other siblings experience role transfer depends on their involvement in the parent’s care. For example, adult children who choose little or no involvement never have to deal with the reality of who their parent has become, or the real needs of an elderly parent with possible dementia. Those siblings have the luxury of remaining “children” until their parent dies.
A Plan for Role Transfer with Your Siblings
Effective caregiving requires a plan. Financial and health-care decisions will have to be made. Fortunately, a family meeting can provide a safe place to air feelings, to share concerns and opinions, and to take a good look at your parents’ true condition. If you’re lucky and your parents are still healthy, this is a good time to discuss and outline a plan of care. Even if your parents have already experienced a medical crisis that forces the issue, a meeting can prioritize your family’s new health concerns. Here is a blueprint for a family conference:
Hot Topics
Eventually, there may be uncomfortable subjects your family will have to discuss, such as the DNR (do not resuscitate) form, the appropriateness of hospice, the prolonging of life with feeding tubes, and the discontinuation of heroic measures. It is imperative that your parent designate a responsible person (often the primary caregiver) to have power of attorney for health care. If this legal instrument is not in place, and siblings are not in agreement, the health-care provider will follow the directions of the most “heroic” sibling. If five children choose “No heroics, do not resuscitate” and one chooses “Yes, resuscitate my parent,” the care facility will follow the one who voices the most aggressive directive.
Siblings Who Are Enriched by Caregiving
The caregiving experience can be a source of family healing. The siblings who find a closer bond during this process are the ones who communicate and have a plan.
Before Morry placed his older sister Bridget with us, he could not abide the nervous, fluttering phone calls from his other sister Melanie. “Every time she called, I’d cringe,” he said. Now, however, Morry and Melanie are working together as a team, caring for their older sister in her final illness. Dividing up the responsibilities, they decided Melanie would do more of the one-on-one “touchy-feely” relating to Bridget, which Melanie was good at, and Morry would make financial arrangements, empty the house, and close out Bridget’s business. In separate meetings in my office, Melanie will say to me, “How is my brother doing?” Likewise, Morry will ask gently, “Is Melanie handling the pressure okay?” They came up with a plan to take care of Bridget that served both their needs and combined their strengths. And for the first time in their lives, Melanie and Jack have a close relationship.
An Unequal Division of Care
One morning I received a call from Nancy, private secretary to a Mr. Thomas Thornton. Nancy explained that Mr. Thornton and his wife, Carmen, were attorneys who had worked together until last year when Carmen’s health failed at age seventy-seven. After she fired four companions, Carmen’s needs were more than her husband could handle; he opted for assisted living. “Mr. Thornton would like to place Carmen with you tomorrow,” said Nancy. When I explained that it was necessary for me to meet with the family before I could admit Carmen, Nancy replied nervously, “He asked me to make all the arrangements for him. I’m not sure he has time to come in himself.”
The following afternoon, Kristen, the youngest Thornton daughter, arrived to see me. “Dad’s schedule is very tight,” said Kristen. “I have four other brothers and sisters, but they’re also busy professionals. I am the only one, as they put it, who ‘doesn’t work.’ I have four children of my own and a hardworking husband, but I find time. During the past year as Mom’s needs have intensified, I’ve tried to help her stay at home—but I can’t do it alone, and everyone else has other responsibilities. I tried to convince my older brother to come with me today, but he just told me I knew what was best for Mom anyway.
“I know what’s best for Mom,” Kristen continued without a break, “because I’m the only one who does anything for her or tries to help her.” Kristen began to cry, “I love my family, but I’m so angry. I don’t like being totally responsible for Mom. I get so resentful. I just wish one of them would occasionally say, ‘Let me help you.’”
If families unite, negotiate, and prepare for the inevitable needs of aging parents, the family structure stands a good chance of withstanding the stresses placed on it by this new stage in family life. Unfortunately, my experience has been that Kristen’s situation, in which one family member assumes the entire caregiving role by default, is the most common.
A Plan Offers Control and Security
As our parents age into their eighties, nineties, and even one hundreds, sooner or later they will need assistance with day-to-day activities. Among siblings and other family members, good communication is vital for devising an effective plan of care. If a plan is ready to go into effect when needed, it will enable all family members to feel more in control and will eliminate many of the uncertainties of long-term care. It is never too early to start communicating.