Chapter 4: Take the First Steps

Now that you’ve joined or formed a care-share team to assist a care partner—to help her live a fuller and healthier life while confronting one of life’s surprises—what happens next? Care teams really need to focus on the care partner: What does she want? What needs does she have that aren’t being met? How can her life be enhanced?

Toward this end, you will convene with a variety of people, asking questions and volunteering time, talents, and energy to ease the care partner’s isolation and difficulties. There are some basic, logical steps you can take to effectively coordinate these efforts: Appoint a leader, schedule regular meetings, establish ground rules, state your shared values, figure out what’s needed, and make a plan for meeting those needs. All the while, you’ll want to keep your care partner’s needs as the primary focus.

Staying focused on your care partner’s needs is also going to require you to sometimes give up control. One team member’s way of doing things may not be the way the care partner prefers. Within reason, respecting and honoring the care partner’s right to self-determination and self-control is important for her well-being and emotional health.

One way to begin is to assist your care partner in defining her needs. The sample form below is a starting point; we include an expanded form in our workbook.

In the first story below, the care receiver, Ann, was cooperative and capable of enlisting aid from others. In the second story, family dynamics made it difficult for anyone to step in to help.

Ann’s Story

When Ann became ill enough that she and her husband alone couldn’t handle all of the details of life, some of us who were close to her and part of her informal safety net formed a team, consisting of a paid caregiver, a therapist interested in group dynamics and aging, one family member, a case manager, neighbors, and some of her friends and former colleagues. These folks gathered to see how they might help Ann live the life she envisioned for herself. Ann listed what she needed help with: grocery shopping, companionship, sending cards and letters, bill paying, cooking, outings, and accompanying her to doctor’s appointments. Those present clarified what time and interests they could contribute.

Even if there’s a clear picture of what’s needed, it will still be important for one person to take a lead role. Even in dire situations, such as the one in the following story, strong leadership can succeed.

A Strong Professional Team Leader Was Required

The oldest son phoned me, explaining that the family had just fired the second social worker, after having fired a nurse care manager, all three of whom had attempted to coordinate the care of this family’s ninety-two-year-old mother. Her fragility, unsteadiness on her feet, and inability to care for herself due to “memory lapses”—combined with a fierce independence—made care coordination important, though family dynamics presented challenges. The son added, “I fired the last social worker because she couldn’t keep peace among us, and she wouldn’t make some of us do what we said we were going to do. I want you to know this history. If you can’t do better, then we don’t need to talk and waste our time.” A strong leader was needed to maintain peace among a strong-willed, very loyal, and often at-odds group of three brothers, two sisters, two involved daughters-in-law, and two granddaughters.

In this situation, a paid professional was invited to try to bring cooperation and teamwork out of disagreements, anger, and disorganization. The family’s loyalty to this beloved woman was clear. To transform this fierce safety net, however, into a well-functioning team, strong leadership was required. Through both of the stories above, you can see that selecting a leader is a logical first step.

Appoint a Leader

Soon after you’ve established a care-share team, you will want to select one person to take the lead. The care partner, if capable and willing, could possibly step into this role, as Ann did. Or perhaps a spouse, child, sibling, or friend can. Some groups hire a professional counselor (as in the case of the family in the story above). Whether this person volunteers, is nominated, or is hired by the group, this leader or coordinator often writes up a schedule; acts as the point or hub person for conflicts; and sets a date, time, and location for a first gathering. He can make the contacts and set the agenda or delegate some of these tasks. Then, when the team meets, this leader may also act as facilitator who will keep the meeting focused and solicit input from everyone (though another person with tact and skill in this area may want to handle this task). He may take and distribute meeting notes that clearly define commitments of who will do what, and when. Additionally, he will continually update the schedule and roster or delegate these tasks to someone who is good at paying attention to detail.

Choosing a leader—other than the care partner—is a way of lightening his or her burden, not layering on tasks. Some leaders go to great lengths to ease another’s burden. Look at the example in the fictionalized story below.

Susan Stewart

Susan Stewart has come back from Iraq, though not to the homecoming she and her family had envisioned. While on patrol duty, Susan was seriously injured when her vehicle was hit. A fellow soldier was killed. Risking their own safety, other soldiers pulled Susan from the wreckage, into a safe area, and toward emergency medical treatment. Infections and complications set in, forcing Susan to return to her hometown Veterans Administration hospital for recovery and rehabilitation.

While in the hospital, Susan met a caring volunteer who offered to work with Susan’s family and local townspeople to create a team to help Susan through the hard times ahead. Together they faced Susan’s complex and challenging new realities. This veteran volunteer provided strong leadership for the many members—young and old—who stepped up to the plate and formed Susan’s care team. Volunteers helped remodel Susan’s parents’ home to accommodate Susan’s wheelchair. Church members hosted an old-fashioned ice-cream social to raise money. Health-care providers offered outpatient services at no or very low cost to Susan. Best of all, the volunteers didn’t view this as a hardship: It seemed a fitting way to say thank you for the sacrifice Susan had made to help protect her country. And it started with the willingness, vision, and leadership of one hospital volunteer—and a wider safety net to keep it going.

Though most team leaders probably can’t go to such incredible lengths, Susan Stewart’s story illustrates the power of an effective leader believing the community could be a safety net and organizing a supportive team around someone who needs help.

Plan the First Meeting

After you’ve chosen a leader and set a meeting time, you will plan the first meeting. Ideally at the first meeting you will make introductions, ask each person why he or she has come, define the group’s vision (read more about that below), and begin to formulate a care plan and a schedule.

This is the time to get ideas and opinions flowing, and decide who’s in and who will do what for an initial period of time. Begin by identifying the five or ten most important tasks, instead of tackling everything all at once. When you jump ahead without a plan, even though well-intentioned, you may easily end up feeling like you’re spinning your wheels. Start out on the right foot by creating a care plan and breaking down this plan into a list of manageable tasks. Write down specifics and post them. Then ask each person to select one task from this list. Encourage each person to start small and then expand his role. (This works better than promising too much upfront, then having to cut back later.) After a while, people who’ve become comfortable being around the care partner might add more time or tasks; others may cut back or drop out altogether.

The idea is to set a working vision and move forward. Set a schedule and encourage everyone to stick to it. But be realistic: Plan for the unexpected. Figure out ahead of time what’ll happen if someone can’t handle what they’re scheduled to do. Being sick, having a car break down, or leaving town for a last-minute business trip can play havoc with the best-crafted schedule. It’s best if a team member who cannot do what has been planned takes responsibility for finding a replacement or contacting the coordinator. Communicate with your team. Use tools, such as a phone tree or an e-mail group list, to find a substitute. Assign a scheduler (either the team leader or someone she delegates this assignment to) who is the hub for such times and who keeps a list of potential short notice fill-ins.

What time period should the schedule cover? A week is too short. A year is often too long. Probably, at least in the beginning, a month or quarter is about right. The following sample calendar has been adapted from our companion workbook. Feel free to use these ideas as you create your schedule, or order our workbook.

After setting a schedule, your next priority is meeting together regularly. This gives you all an opportunity to mention outstanding needs, gain information, support each other when the task becomes difficult, and provide for the emotional well-being of members who may be frightened, challenged, or angered by some aspect of the caregiving role. You can also express appreciation for one another’s contributions, celebrate successes, and enjoy coming together for a common purpose. What’s more, face-to-face meetings allow you to address needs and concerns. If these are too big for the team to handle, this may be where an adept individual or a professional is called.

Establish Some Ground Rules

At the outset, as well as when your team takes shape and begins to function, establish some ground rules. Here are a few common rules that many teams use:

  1. Maintain confidentiality. Keep the sensitive information gathered in a meeting inside the team. Avoid gossip: This includes anything from health or scheduling data to clarifying whether or not your care partner wants to reveal the nature of an existing issue. It definitely includes avoiding gossip about what’s going on in the lives of other team members. You and your team will likely become close to and supportive of each other, but it’s important to guard one another’s privacy and keep details from spreading to a broader circle.
  2. Set limits on your availability: Do not take on a task you’re uncomfortable with or commit to more time than you can really give. Offer only what you can actually accomplish. No one knows for sure how long a care team will exist; it’s easier to avoid burnout than to deal with it later. Learning early to only offer what you can, to set limits, is valuable, as is building in opportunities to revise schedules and tasks as you go. This is part of why a team has the potential to work better for longer than a buddy or familial set up. There are more hands and heads to lend to the tasks. Working as a team allows all of you to take well-earned breaks and tend to the other important parts of your lives.
  3. Be on time. Starting and ending meetings on time is respectful of all parties. Try hard to keep them short. Show the same consideration to your care partner, who may be leading a life filled with limitations on mobility. Waiting for an anticipated visit becomes an important part of the day. Being late can raise anxiety for the care partner—certainly not anyone’s goal.
  4. Keep purse strings tight. It is easy to complicate a relationship with loans or cash gifts. Treats of an occasional cup of coffee or cookies for a meeting are fine, but paying for a doctor’s visit, or renting a wheelchair, can easily grow into either dependency or resentment. It’s far better for a team to brainstorm ideas on how to take care of a need. Contacting a social service agency may be appropriate in figuring out how to provide items or services. The team itself is not a social service agency, but it does pull together the resources to contact and work with one or several. We have repeatedly seen how gifts of money can complicate things more than anticipated.
  5. Show respect. As a team, take the time to compile a list of behaviors that show respect for one another. Post this list to help ease tense moments. Avoid “cross-talk,” which is shifting the focus of conversation away from the work of the care-share team and toward yourself. Interrupting, likewise, is most often disrespectful. Help each other avoid such behaviors.
  6. Honor endings. Endings inevitably come, whether it’s a timely end to a meeting, the departure of a team member, the death of the care partner, or the physical recovery of the care partner. Creating rituals to honor an important transition often helps all concerned recognize and deal with the change. (Read more about this in the Keep Rituals and Traditions section of Chapter 5.)

My Grandparents’ Story

Every night at 5:30 p.m., Grandpa would be pushed in his wheelchair into the room where Gram was reclining on the couch. “My dear, you look lovely tonight.” he’d say, “Would you like to join me for a cocktail?” She’d reply, “Oh, Walter, I’m so glad to see you. I’d love a Manhattan.” And Grandpa would turn to the person propelling his chair to ask that drinks be served.

Neither of my grandparents could walk independently, yet those around them created the space and provided the “legs” for their nightly ritual, so important to both of them. My grandparents were still in charge of their own lives, and their care-share team worked to safeguard that independence. Maintaining small habits, routines, or rituals can play a critical role in protecting the quality of life for vulnerable and ill people when so much else may be changing, uncertain, or lost. There is a delicate and ever-changing balance.

Clarify Vision and Values

Two of the most important tasks a newly formed team can do are to define a group vision and to compile a group list of values. Ask yourselves, “Why are we helping? What do we hope to make happen?” When you put these answers into a brief vision statement and a list of values, you’ll create a road map to follow as you participate in this new community. Frequently remind the team about the shared vision and values that have brought you all together. When you’re faced with ambiguous decisions and situations, these provide focus and glue. A team’s vision statement may be as simple as “We will support Dan and Corie during this difficult pregnancy,” as was true for the team in the next story. Try to state an active vision. Avoid having it be tied to one specific outcome, since none of us can see the future. A general vision statement tied to a hope-filled outcome allows for variation. Values will evolve from this.

Dan and Corie’s Values

Dan and Corie invited family, friends, and neighbors into a care team when Corie was bedridden during the second month of her pregnancy. After three months, it became clear that crisis was following crisis. To Dan, it seemed Corie was part of the problem: She wasn’t following the doctor’s orders or accepting help. And the team was wearing down. At a scheduled care-share meeting, Dan brought up the issue, asking members to share feelings and brainstorm ideas to break out of the cycle. Together, the team restated the value of holding continuing connection with friends and relatives. They reaffirmed their desire to hold curiosity and compassion when faced with problems like this one. They reassured Corie that the team existed for her benefit, and that having a difficulty was not a bad thing, but could lead to creative solutions and positive outcomes.

When the team expressed their frustration, Corie could then understand how her actions affected the people she loved—and needed—most. Once Corie accepted her temporary dependence on others, she could begin thinking creatively about community and connection. In the next story, Trisha’s team relied on their four stated values when it came time to make choices that were in the best interest of their care partner.

Trisha’s Move

In our care-share team, when we need to reach a decision or prioritize, we use a set of four values that have emerged over time: safety, security, serenity, and simplicity. The alliteration helps us remember them. When we are discussing something in our care partner’s life and are having difficulty reaching a decision, remembering these values helps us set priorities.

For instance, when Trisha was given the chance to change rooms in the facility where she lives, we talked about her options with an eye toward safety: Would the new room be more or less safe than the current one? We talked about her feelings of security and serenity: Where did she feel most able to be herself and sink down roots? We talked about simplicity: What about the new space would contribute to living simply? Trisha then made a decision based on these values and priorities. She admitted that, without a team, she’d have skipped this process. She loved the result. 

Trisha decided to move, but she waited until an appropriate first-floor room was vacant. She talked with the management about the details of the move so that team members would not have to supply the labor. She honored her needs for more light and air in the new space while paying attention to keeping the move organized, purposeful, and positive. 

With this well-thought-out decision, team members felt assured that their friend’s inclination toward spontaneity and self-expression wouldn’t lead to crises and chaos. They embraced the move and each lent a hand to make the new room a home—when it was time.

Manage Choices and Decisions

You and the other care team members may not agree with all of your care partner’s, or her surrogate decision maker’s, choices. This can pose a dilemma.

For example, if a care partner elects to have a surgery that entails a high level of risk and a low chance for success, it might be difficult for you to affirm this choice. You may fear that this will create an even greater crisis and a higher level of need. You might feel torn between wanting to protect the care partner’s right to make her own decisions and your own right to limit what you offer her.

At other times, a care partner may continue to engage in risky behavior, while still asking for help. While refocusing on the shared vision and values may frequently help resolve such dilemmas, others may involve competing values and prove more difficult. At that point, you will need to reflect deeply upon your reasons for choosing to be supportive. It’s equally important for the care partner to show sensitivity and respect toward you and the other team members. As much as possible, keep an open dialogue and perhaps seek professional facilitation to define roles, limits, and areas of compromise. And remember, circumstances change: Not everyone will be well-suited to participate for the full life of the care-share team.

Saying No to Grandma

When my grandmother became incapacitated, her sleep habits changed. Somehow her mixed-up body perked up at night and rested only during daytime hours. When she called on us to help her in the middle of the night, we began humoring her, comparing her to Henry Kissinger, who reputedly conducted meetings in foreign countries on his Washington, D.C. timetable. After a while, however, we acknowledged that we hadn’t taken care of ourselves. We had to give Grandmother a “curfew” and impose limits on our availability. While Grandma definitely disliked this change, it caused no irreparable damage and helped us better manage our own lives.

Your challenge may become holding the care partner’s needs, preferences, and values as primary but also considering your needs and those of the care team. Balancing needs is a complex task requiring self-knowledge, communication skills, and flexibility. In many situations, outside professionals may help by facilitating discussions when there are tensions between hopes, fears, preferences, values, and objectives.

Most times, the care partner will identify his own needs and the way in which they are met. In other cases the care partner and a trusted loved one, or the team as a whole, will collaborate to define needs and ways to meet those needs. In still other cases, such as advanced mental deterioration (for example, the late stages of Alzheimer’s disease), someone other than the care partner must handle these decisions. In all cases, you should keep values and lifestyle in mind when making decisions for him.

When a care partner is legally deemed no longer able to make sound judgments but had the foresight to legally specify a Health Care Power of Attorney to make health-care decisions, then that person can speak on his behalf. In the unfortunate case where no appointment was made, then someone will be appointed—but this may not be someone the care partner would select. Appointing a Health Care Power of Attorney is an important part of planning.

Balancing needs becomes even more complex when the care partner is a child or when the team is supporting the entire family. Obviously, a child’s welfare and well-being is dependent upon his parents, who, in turn, rely heavily on their own safety net. Therefore the care-share team most often supports the needs of the whole family. The following story of Crystal is an example of this working well.

Crystal’s Cystic Fibrosis

Eight-year-old Crystal and her entire family were challenged and forever changed by her cystic fibrosis. Crystal’s mom, Elaine, relied on her own best friend, Elizabeth, from the start. Elizabeth, in turn, recruited, encouraged, and guided many of their mutual friends into various helping roles. Because their kids went to the same school and they attended the same church, Elizabeth had ample opportunity to support and guide the actions of this loosely defined team. 

Elizabeth often invited Elaine’s sons, who were the same age as her two sons, for sleepovers during Crystal’s many hospital stays. During her long transplant, Crystal’s two brothers were well taken care of as many other parents shared in car pooling, sporting events, and sleepovers. Because Elizabeth rallied other families to pitch in, the family’s trauma was lessened and life went on despite the heartache of Crystal’s final and difficult year of life.

No matter the age of the person you’re helping, offer your support in a manner consistent with her needs, values, and preferences (or of those speaking for her). Author Mary Oliver reminds us that “playfulness, grace and humor, those inseparable spirits of vitality” are invaluable. Using gentleness of phrase, humor to maintain a sense of balance, and opportunities for playfulness will serve everyone well. And as you go about your work, remember these three basic assumptions: Keep the care partner at the center of the care-share team; do only what you can freely offer; and speak up respectfully, especially when anything uncomfortable comes up.

Handle the Complexities of Money

In most safety net scenarios, people’s access to and relationship with money varies widely. It’s simplest to not spend your own money on the care partner’s expenses. When you do, expectations of continued spending, reactions or jealousies by other team members, loans mistaken for gifts, secrecy, and a host of other dilemmas crop up. A precedent might be set that can become increasingly uncomfortable and hard to address. On the other hand, each situation is unique. Some team members may have an established history of gift giving or spending their own money on the care partner. Before you give of your own resources, be aware of the potential complexity of the exchange of money. Then, discuss with the whole team your wishes in handling this issue. Use team meeting time to address financial matters head on: Together, you and the group can reach clear and sustainable solutions.

More about Martha

As the disease progressed, so did Martha’s money woes. Without her health, there just wasn’t a way for Martha to stay employed. It seemed unfair that she’d lose her apartment and her health insurance. Despite her attempts to keep her helpers apart, over time some of them met each other and eventually discussed some of the more complicated issues. Money was one of these issues. At the time of her final hospitalization, the team made the realistic decision to relinquish Martha’s apartment and put everything in storage. They then contacted Martha’ family members, pooled their resources to pay for one month of storage space, and boxed up Martha’s belongings for storage until a family member could come and make final arrangements.

You may be tempted to see yourself as the “saving angel,” but stepping into this role takes important identity away from the care partner as well as decreases both the buy-in and the scope of other care-share team members. As you walk through this journey with your care partner and team, sensitivity about financial issues may be an ongoing challenge and lesson. We both have learned many lessons the hard way and will no doubt learn more.

Review Medications

It is not our intent to try to give specific advice on medications. What’s important is that one person—ideally the team leader—periodically review all of the care partner’s medications with one physician. Medications can multiply as a person consults with different specialists, and it’s wise to designate one physician who will act as the switchboard operator. What’s more, interactions between medicines can generate surprising results. Some puzzling behaviors can be the result of drug interactions. You can help simplify your care partner’s life, and lower his expenses, when you know the full picture of all the prescriptions he is taking. Keep a log of what medicine was prescribed by which physician and when. This will prove to be a helpful tool when a physician needs to reevaluate a medication or in case of a health crisis.

This is another situation where you’ll need to balance the care partner’s privacy with your ability to provide appropriate care. Carefully weigh each unique situation: Let your care partner’s level of comfort with transparency and openness guide your decisions.

Figure Out What’s Needed

Whenever you take part in a care team, you’ll discover that there are some rather standard tasks, and others that are highly personalized. No matter the situation—illness, injury, frailty, divorce, birth of a child, time of grieving, or end of life—you can tailor your response to the unique need.

It’s good to maintain an open mind and heart about what is possible. Brainstorming needs, listing skills and availabilities, seeing where there are gaps, and doing more brainstorming about ways to fill these are all good early steps. Maybe your group can’t fill every need: That’s when some prioritizing needs to happen. As in the earlier story of Hugh and Megan, there may be a long list of needs. Hugh decided to extend his team by hiring some help and using friends and family for the things they were best at. If money had been an issue, he might have researched other avenues or invited other people in. He was fortunate to have a large safety net from which the smaller care-share team originated. Or, some needs might have gone unmet, leading to more prioritizing.

Will’s Prostate Cancer: Ken as Team Leader

Men can be hardheaded and stubborn, and want to keep illnesses, surgeries, and health conditions to themselves. Will was an exception. He worked in the high-tech industry, where forming and reforming teams to accomplish objectives and create products was the norm. When he was diagnosed with prostate cancer, he recognized immediately that his wife, who worked and carried the bulk of the responsibilities for their nine-year-old daughter and eleven-year-old son, would not be able to provide all of the help he would need. Nor did Will think she should. He adored his wife and respected the way she balanced parenting and directing the marketing department of a small firm. He wanted to protect her so she could continue these things. He was also realistic about what his needs and limitations might be.

Will’s creating a care-share team was propelled along by his conversation with his best friend and work colleague, Ken. During a long lunch when Will shared his news, Ken assured him, “Well, count me in. I want to know all the details, and to be a key player in this team. We’ll see you through this illness and out the other side. I’ll be there for you until this project is successfully accomplished, too.”

After some private thinking and discussions with his wife, Will followed his wife’s suggestion and asked Ken not only to be a part of the team but also to lead it. Ken was
touched by the trust his friend placed in him. He agreed, but said he’d have to process it in his own fashion to “operationalize” project goals as he phrased it before they could form a team. The others willingly followed his lead.

Thus began one very successful care-share team in which Ken played an important lead role in supporting his friend Will. Ken used his valuable tech project management experience to quietly, efficiently, and sensitively build and maintain a team “project” that saw Will and his family through many difficult days.

Remembering the care partner’s unique needs, as well as each team member’s gifts, is essential for creating the best care team. Regardless of how good the planning is, however, it’s also valuable to keep a sense of humor nearby. Humor can diffuse or soften many potentially difficult situations, as can prayer, if that’s something that’s part of the team culture.

Tori’s Challenge: John’s Humor

There was a lot of humor in my first meeting with Tori, a powerful, independent, smart care partner who was angry because her disease brought a premature end to her accomplished career. While still beautiful in most people’s eyes, Tori was very sensitive to the disease having taken one eye, which forced her to wear what she thought was a very noticeable artificial eye. She was sensitive about people’s reactions to her prosthetic eye. I was interviewing her, and she was interviewing me, to see if I would become a paid counselor for her and a professional member of her team. During the interview, Tori suddenly reached up, popped out her artificial eye, and handed it to me. With strong, if quaking, nerves I replied, “Oh, you want to see if we can see eye to eye.” She sighed, laughed, put the eye back in, and said that I “might just last.”

Clearly, there will be times of tension when needs can’t be met or when people may not get along easily. In addition to praying, prioritizing, and keeping a sense of humor, remembering that this is a time- and task-limited sort of family may help. It’s not likely to last forever. Also, remember that the goal here is to be helpful, and to do so in a way that respects all participants. 

You may not have the luxury or the control to hand pick and retain the ideal team from an unlimited number of friends, neighbors, relatives, paid social and health-care professionals, and others who volunteer to comprise your personal safety net. Therefore, you must be practical and creative. Expect that your team will evolve, sometimes based on the needs of the person receiving care, sometimes based on the needs of people giving care, and sometimes on the fickle finger of fate.

Ed’s Care-Share Team Keeps Growing

When Ed suffered a heart attack, his wife, Elita, sent out an e-mail to family and close friends. As time passed and Ed had extensive tests and quadruple by-pass surgery, he, or Elita, would talk with other friends, colleagues, or church members about Ed’s condition. People usually were interested and asked if there was anything they could do. Elita and Ed would thank them and tell them of the e-mail report, the “Ed Report” as Elita called it, and ask if they would like to be added to the list. Soon the list grew to forty-three people. Not everyone on the list lived close by, so they contributed by praying, calling, and sending notes of encouragement. Some who lived in town provided transportation, meals, and help with household chores, which allowed Elita to take time off during the long months of Ed’s recovery.

It’s been said that “life is 10 percent what happens to you and 90 percent what you do with it.” Once you’re in a care-share situation, it’s important to make your best efforts to meet needs head on.

The care-share relationship is dynamic and changing. You will be looking for ideas, and sometimes these fresh ideas come from people who approach things differently than you do. A person who is difficult—who never goes with the majority—may want to join the team. Though this can present challenges, it’s not necessarily a negative. Inviting this “stranger” into the midst of your team can provide a useful contrast to the group opinion and perhaps provide different ideas and skills. At times, in fact, the “stranger” is exactly who is needed. This may be the ex-spouse, the youth in a group of adults, the Muslim in a mostly Buddhist group—in other words, the unexpected. In Gracious Space, Pat Hughes notes this:

“Community is dependent upon our willingness to invite the stranger . . . a true community is where we encounter people different from ourselves . . . a stranger is someone who thinks differently, acts differently or has a different background. . . . It is as if we each hold a piece of the puzzle. In order to complete the puzzle and resolve the issue, everyone needs to bring his or her piece. Not only will diverse perspectives help complete the puzzle, they can generate a breakthrough situation—one where a creative solution emerges from sharing different ideas. The greater the difference in thinking, the more creative the solution will likely be . . . in nature, diversity is insurance for life.”

As you take your journey into caring, you—and the rest of the team—will inevitably face challenges. You will wish at times you were all like-minded—that would be the easiest course, especially in difficult scenarios. But this is exactly when the most creativity will be needed. Think twice before barring the door to strangers. As Pat Hughes so wisely reminds us, “Seeing the stranger as an ally, rather than an enemy, is central to dealing with complexity.” Sometimes a way to gain this outside perspective is to add paid professionals to your safety net or care-share team. This can make a critical difference.

Floyd’s Story

Floyd was an eighty-three-year-old legally blind man who called me at the advice of his accountant with whom he had worked for the past thirty-six years. Floyd had one son and one daughter, both of whom had busy professional lives and families on the opposite coast. Floyd, a highly successful business man, had become increasingly isolated following the death of his wife five years earlier and the deaths of several long-time friends. Floyd remained remarkably independent, living in his condominium within short walking distance of his bank, grocery store, dentist, and short taxi ride to his physician. However, his accountant, with whom Floyd usually met two or three times a year, could see that Floyd was becoming increasingly frail and therefore vulnerable to an accident or illness. He worried that no one would immediately notice and summon the medical attention Floyd needed. 

Floyd’s caring accountant laid out this concern to the family and offered some options. Floyd listened, but was resistant to this idea that was at odds with his accustomed independence. Recognizing that his poor eyesight did make him vulnerable to falls and because he preferred to pay someone, rather than ask his busy kids, Floyd hired a life-coach counselor to help set up a care-share team.

Here is how Floyd’s team operated. First, Floyd and I, his counselor and life coach, created a list of people with phone numbers and e-mail addresses. Secondly, we wrote a letter and sent it to this proposed care team. The letter expressed appreciation and described our belief that the members needed to know how to reach each other in the event of an emergency. Floyd acknowledged that he was becoming frail and that he welcomed everyone to help him look out for himself.

Get Ready

Ask yourself:   What unique skills can I contribute to this team? How much time can I commit on a regular basis?

Make a list:   Who would make an effective leader for this team? Should we hire a paid professional?

Make another list:   Jot down immediate needs in order of priority. Which tasks can I handle? Which responsibilities can I delegate?

Prepare:   Can I say no if someone asks for more time, energy, or money than I can freely give?