A New Paradigm of Caregiving

By Gloria Barsamian

Caretaking is fraught with many myths, assumptions and beliefs that have prevented generations of caregivers from understanding that caregiving is a rite of passage. Rites of passage define a sense of self in relation to society, paving the way for life transitions and allowing a more meaningful and clear incorporation of both familial and public roles. Seeing a family member through a health crisis marks the beginning of yet another transition for both the caretaker and the receiver and helps to define new roles and responsibilities in each of their lives.

Although caretaking can help younger caregivers understand their place in the world, most view it with dread: an emotional roller coaster in which a plethora of daunting practical issues must also be addressed. These issues include the needs of spouses and children, estate and legal matters, health insurance, medications, funeral arrangements, and, in many cases, conflicts with siblings about how best to care for Mom or Dad and how to apportion responsibility, financial and personal, for their care.

Though caregiving is always a multifaceted challenge, it can also offer profound emotional and psychological rewards, and with the right perspective, it need not be confronted with unalloyed dread and anxiety. The key lies in going beyond these anxieties related to caregiving and developing supports that are relevant to our growing population in need of care.

Caregiving: The New Reality

Millions of Americans will end up in a caregiving or care-receiving situation eventually. Apprehension is understandable. How will we balance our own families, careers and retirement dreams with the demands of caregiving? How will it interrupt our lives or defer our dreams? How will the emotional toll affect our families and ourselves? Will we have the emotional strength to provide care if a parent is debilitated for a long time? These are some of the natural questions that almost all of us ask ourselves. Typically, however, families do not address these complex issues until the crisis is upon them.

One of my chief recommendations is that families, if at all possible, begin the caregiving discussion well before a parent becomes ill. The typical caregiving situation is an adult child caring for an elderly parent, yet there are many permutations. For example, a parent might find him- or herself caring for both an adult child and that adult child’s family, a spouse can be caring for his or her mate or a grandchild may be caring for a grandparent. Regardless of the exact caregiving situation, this kind of early discussion can be very helpful.

Start The Caregiving Conversation

As we age, it is natural to worry about what could happen to us and who will take care of us in our old age, should we need help. But keeping these worries to ourselves does nothing to prepare our families for the caregiving challenges that may lie ahead. It can be enormously reassuring for all to give voice to these worries and to begin to plan for the future. As life circumstances change, the discussion can be renewed as often as necessary, so that as the future unfolds, all concerned feel confident that everyone’s fears, expectations and concerns have been aired.

Many families find that opening the conversation about caregiving requires a shift from long-established family dynamics that have prevented the family members from relating to each other. But once the conversation is in the open, the relationship between family members can be enriched and deepened. For caregivers and receivers, once new dynamics are established, the process becomes something to no longer fear. If a discussion starts early enough with the purpose of creating reciprocal advantages for both generations, caregiving can become a long-awaited and well-prepared source of renewal and meaning for both the caregiver and the care-receiver.

“Reinventing and rediscovering caretaking means establishing an open conversation early on, before an illness strikes.” Along with opening a discussion, the social expectation that we should respond to one another in kind is the foundation of the new caregiving paradigm that is based on a mutual exchange of recognition and understanding. The care-receiver gives up his or her independence until the crisis has passed, and the caregiver understands the paradoxes and the helplessness that occurs with an illness. This reciprocity can heal broken relationships because, in our culture, there is no common ritual for caretaking, and reciprocity can clear the way to promote a new kind of relationship between the generations.

This reciprocity in caregiving emanates from a sense of shared responsibility, mutuality and intimacy, not from a guilty conscience or role-reversal strategy where parents become like children. In modern caregiving, there is rarely an open conversation prior to illness, and this concept of reciprocity is often lost among the emotions and stresses of caretaking. As people struggle to come to terms with the failing health of their loved ones, the new paradigm (opening a discussion, together with the concept of reciprocity) provides a societal mirror in which the adult child is reflected in the aging parent, and the aging parent is reflected in the adult child. Two people bonded in a caregiving situation have much to share with one another and thus may see themselves reflected in some way in the other.

The caregivers may see their own future, and the care-receivers may see a younger version of themselves. Within the new paradigm, the dynamics within a family have an opportunity to shift and strengthen. Caring for an elderly parent or loved one magnifies the relationship between the generations whether it is positive or negative because the role of dependency is reversed. There is an emotional and physical strain on both parties because of this dependency, but with some preparation, caring for an elderly loved one can be a rewarding and life-altering experience for everyone involved.

Though caregiving relationships are on the rise, few are prepared for the role of caregiver. This lack of preparation exacerbates caregiver burnout, irritability, mood swings, sleep disturbances, depression, fatigue and sexual dysfunction. Lack of preparation also intensifies existing family dynamics, sometimes for the better, but often for the worse. But illness can be an opportunity to break dysfunctional family patterns where the relationship between members may be strained or altered by unhealed wounds.

Acknowledging Emotions On All Sides

Caregiving and care-receiving are emotionally and spiritually rewarding experiences. To realize this, both parties have to be honest with their feelings and with one another. The care-receiver needs to be cognizant of the demands being placed on the caregiver. Caregivers should recognize that if they have negative attitudes, such attitudes will reinforce the helplessness of the sick person.

If a person is feeling sorry for himself or herself, it reinforces the feelings of anger and resentment toward those who care for that person. There are a multitude of families and patients who become so overwhelmed and anxious when a parent needs care that frustration, anger, resentment and helplessness can often surface and find no resolution. Many of these feelings cause bitterness to resurface in other areas of the family’s life. Caregivers need to talk with their loved ones and be realistic about the feelings they have, but also about the feelings that the care-receiver has.

Most elderly parents who need physical care also need emotional support from outside the caretaking relationship. Caregivers need support as well, given that they are twice as likely to suffer from depression, anxiety or other health problems as a result of the strains of providing for both their own families and their parents. “Once the conversation is in the open, the relationship between family members can be enriched and deepened. ” A positive attitude and an honest relationship between the caregiver and receiver are beneficial for the physical and psychological health of both parties.

Pessimism makes the caregiver sick and the care-receiver bitter, interfering with a family’s coping skills and causing serious problems in other relationships. We all have emotional legacies from our families that color our expectations and perceptions.

Planning Eases Transitions

Talking to parents early about their wishes in the event of a debilitating illness, infirmity or death eases anxiety. Conversations about helping with daily activities such as shopping, meal preparation and medical appointments can reduce role ambiguity when multiple family members will eventually share caregiving responsibilities. As the caregiving situation changes over time, the need for dialogue continues.

Some people can move past the early stages of caregiving, and some may settle in for the long haul. Many times, the need for placement in a nursing home arises because of increased stress placed on the caregiver as a result of the many complex roles of caretaking. The tipping point comes when the caregiver burns out or when the care receiver needs around-the-clock care. When a patient becomes incontinent or cannot walk, feed, or bathe him- or herself, many caregivers have to rely on a nursing home because they can no longer continue providing hands-on care themselves.

Often it is not their first choice, but it remains the only option for stressed-out caregivers and care-receivers too ill to remain at home. However, no option should be permanent. Rehabilitation, even in a nursing home, offers the receivers time to regain strength and motivation in order to get back to their former way of life before their health declined. While the loved one is in rehab, the caregiver now has time to prepare psychologically and physically for the next phase of caregiving.

Discussing the challenges of caretaking roles can also be an opportunity to bring up issues regarding the importance of rehabilitation, finances and legal documents. Often parents feel burdened by the responsibility of keeping things such as wills, funeral arrangements and private possessions to themselves. Of the patients I interviewed, many found themselves talking about nothing in particular, but over time they were able share their care-receiving preferences.

An adult daughter of an aging father who was critically ill told me she wished she could have been talking to her father “like this before he was ill.” She reported that through these conversations, she gained information about the whereabouts of important legal documents and hidden assets that, in the end, helped her father continue to live in his own home with nursing care and paid caregivers. However, if adult children and aging parents are unable to communicate verbally without stormy and irrational behavior, for a caregiver to provide primary care to a loved one may not be the best solution. Instead, a contract similar to a prenuptial agreement can be instituted with the help of a lawyer in order to sort out care-receiving preferences as well as asset distribution. Although it may sound harsh and calculated, such a contract has worked as a last resort in some families who could not communicate.

Making The Caregiving Commitment

Old people worry about death, but more so about who will care for them if they become ill or infirm. Illness as a lived experience usually becomes a family matter. An elderly parent facing the everyday problems of how to cope with illness will often turn to his or her children. Some adult children are unprepared for this occurrence, and this is not surprising. One day someone is in total charge of his or her life, career and family, and then everything changes. Suddenly, a competent parent becomes helpless, and siblings can become indifferent and indecisive.

Some families discuss feelings openly, and this helps them put things into perspective. Other families cannot communicate openly, and this makes caregiving much harder. Among all the families I’ve worked with, I found a level of depression and helplessness in caregivers whose elderly parents did not go back to their former independence prior to hospitalization. The caregivers felt they had to do it all and took on the responsibility of providing everything for their parent. It is important to take time and consider the impact of caretaking, for it can continue for months and sometimes even years.

Talking about the commitment may require you to openly discuss it with your family because the decision to become a caregiver directly involves everyone in your life. Most people feel they are unable to perform the work of caregiving simply because previous generations chose not to caretake, sending their loved ones to nursing homes. Families often do not communicate and therefore struggle unnecessarily, underestimating their own power. Even well-prepared families agree that caregiving is difficult work, and caregivers sometimes resist treatment for themselves despite being in need of care.

As I think back, nothing I have learned in my 28 years of working with families and staff members at the Lahey Clinic has struck me more than a patient and family’s need for reassurance and hope. Illness is a terrifying experience for both patient and family. It is important that both parties be able to bolster each other’s courage and hope.