Heart/Stroke: The Art of Caregiver Teamwork
Compassionate compromise is the key play
BY:BARRY J. JACOBS, PSYD
We carry common images of families in medical crisis: Dad, soon after his heart attack, lies in the hospital bed looking weak and worn. Mom and the adult children with their spouses circle the bed with solemn faces. Each expresses his or her love for Dad and an impassioned, sincere commitment to help with his recovery. Dad responds with tears, heartened by the determined support of his caring loved ones.
But, return to this family in a few months and the picture has changed. Mom can't get any of the kids to drive Dad to cardiac rehab. For all the promises made in the hospital room, the siblings now feel encumbered by obligations to their own kids and careers. Mom, for her part, avoids asking them to assist, feeling guilty if they reluctantly agree to help and resentful if they apologetically turn her down. The once-united caregiving team has quickly fallen apart.
Research consistently finds that family caregivers who solicit the support of loved ones, neighbors or healthcare professionals cope better with caregiving over time. What's also clear is that primary caregivers who don't utilize the help of others are more vulnerable to mental and physical health problems. Lining up a caregiving team and finding ways to keep its members involved, though, can be frustrating. Even when working with well-intentioned team members, their follow-through may be poor and the amount of care they provide may decline as caregiving wears them out.
If you find yourself in a cardiac crisis, though, you can employ strategies to assemble an effective, sustainable team. You need a variety of members to play specific roles and an ability to manage, knowing how to shift members' roles or even seek new members as caregiving demands change from the early moments to the acute and then chronic phases.
Team-Building in the Hospital
Sudden, life-threatening medical events, such as a heart attack or stroke, create so great a sense of urgency that family members usually rush to the hospital to commiserate and give aid. Even while family members are reeling from the initial shock, it isn't too soon to begin team-building. In fact, positive action can help rally spirits as well as put a feasible plan in place.
First, develop a common understanding of the situation. As a spouse or adult child, ask the medical specialist, social worker or the patient's primary physician to convene an in-hospital meeting to discuss the patient's condition with family members, close friends and even a clergy member. The patient may attend, if he desires; what's crucial is that he gives permission to the healthcare team to share his medical information with others at the meeting.
The initial questions to ask the professionals are: How is our loved one's condition? How much and what kind of help will he need in the near-term? In three months? In a year? While doctors often are loath to predict the future, they'll be more forthcoming with information if you ask for their best educated guesses rather than definitive answers.
This also is the best time to develop a "cheat sheet" for family members, listing the key players on the medical team and their contact information. For a stroke patient, for example, you may be dealing with 10 or more people, including the primary doctor, neurologist, occupational therapist, speech therapist and others.
Once everyone is on the same page about the patient's condition and the care he'll need, you're ready to recruit your team. Turn to each person attending the meeting and ask: What caregiving tasks are you willing and able to take on in the near-term? In three months? In a year?
Family members and close friends don't have crystal balls, but they minimally can give indications of how much and in what ways they could contribute. Not everyone will contribute equally or in the same ways. One who works in finance may offer help sorting through the insurance forms and medical bills; a homemaker may offer assistance with driving and shopping for groceries. Those who can't provide hands-on help may pitch in by pledging funds to pay for home health aides. Those already stretched thin financially and time-wise may beg off from participating altogether.
A third task during this initial meeting is equally important for the ongoing workings of the team: Establish a way to frequently disseminate revised team- and patient-relevant information.
A typical approach is for one family member to serve as a go-between with the healthcare professionals and then share medical developments with the rest of the team through phone calls, e-mails or family listserv postings. This spares the doctors from repeating explanations each time a family member stops them in the hallway. It also prevents the whispering-down-the-lane phenomenon that can occur when family members share scraps of information with each other willy-nilly. Family members will know the source to contact to learn more about their loved one's status, knowing everyone on the team will be given the same news.
Follow-Up Steps
When family members are shown consideration by being brought up to date on the latest information, they become more invested team members. But that doesn't mean their caregiving commitments will be set in stone. As their lives change, they may reconsider the amount of caregiving they're willing or able to do. That's why it's key at that first meeting to set up a schedule of subsequent meetings to review caregiving needs and the team's plan.
Ideally, the team should meet in person every six to eight weeks; if the family's geographically dispersed, conference calls usually suffice. At every meeting, each person should have an opportunity to discuss his or her particular situation and the capabilities and limitations as regards contributing to the team. No one should be criticized for not doing enough; everyone should be accorded the respect that he or she is doing all that's possible.
While some teammates occasionally may back off from caregiving, others may step up to pick up new duties. If no team member is able to take on more at a given time, then the team needs to be expanded. It's at that point you should consider alternative sources of help.
Team-Building at Home
Once the patient leaves the hospital and is discharged from the rehab facility, he usually has to deal with residual deficits from his medical condition. Hopefully, he will have recovered from most of his disabilities. But if his heart attack has left him unable to climb stairs, lift objects or otherwise exert himself physically, he may need ongoing care to help with such basic activities as walking long distances, bathing, even dressing.
Unfortunately, during this chronic phase when the patient is back home, it is normal for caregiving team members to begin to gravitate toward their other responsibilities. It's not that they've stopped caring about their disabled loved one or the well-being of his primary caregiver. It's that they feel they no longer can sustain the level of sacrifice they were making without neglecting their own or other family members' needs.
Here's where the regular family meeting comes into play: When team members frankly and openly express what they can and can't do, the team as a whole can problem-solve and devise alternative plans and consider previously untapped sources of support. For example, should we hire a home health aide to shower Dad every morning since neither he nor Mom has the energy or strength? Should we hire a cleaning service for them? Perhaps Dad would be willing to attend a senior center several days a week? Maybe Mom and Dad would consider an assisted-living facility where on-site staff could more easily help with Dad's physical needs? Like any brainstorming session, many of these ideas will be considered, debated and then rejected by the team. But a few will be put into operation as the latest iteration of the evolving caregiving plan.
When the patient is home, the regular family meeting serves two goals-to fine-tune the caregiving plan and to maintain a forum for open communication in which mutual empathy among team members is upheld. It's achieving the latter goal that sustains the team as a whole. When family members discuss the roles they each can play to meet the challenge of providing care, it engenders a sense of common purpose that makes everyone involved feel more supported. Without that discussion, family members may feel abandoned and become angry.
Let's consider our initial example again. When Mom can't find anyone to drive Dad to his cardiac rehab, she may conclude the worst: My children are selfish and don't care about me or their father. This will be especially true if she hasn't talked with her kids about the other pressing needs in their lives. But if discussion has occurred in the regular family meeting and Mom has truly heard what her children are experiencing, then she won't feel as hurt by their reticence to help. She may even sympathize with them. They, in turn, will care enough about her predicament to help come up with an alternative plan to get Dad back and forth to the hospital.
This sort of exchange underscores that caregiving isn't always about elbow grease; it can be about picking each other's brains in novel ways to solve problems. It also underscores that, so long as the dialogue continues, the caregiving team remains intact. Team members' roles may be fluid, but the commitment holds that Mom, children and friends are in this together.