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She's Not the Same Mother I Loved

2015; Elsevier BV; Volume: 16; Issue: 10 Linguagem: Inglês

10.1016/j.carage.2015.09.003

2377-066X

Jeffrey Nichols,

Geriatric Care and Nursing Homes

Dear Dr. Jeff: Family members frequently express distress that the resident they visit is no longer the same person they knew and loved, while our staff seems better able to deal with the cognitive decline and behavioral changes often associated with advanced disease. How can we help families deal with both the grief experienced from a loved one's decline and their guilt over their reactions to this decline? Is this even our job, or should they be seeking outside counseling? Dr. Jeff responds: When a daughter asserts that one of our residents is “not the mother I knew and loved,” she is not suggesting that her parent has been kidnapped by Martians and a substitute inserted in her place. Obviously, families accept, on a basic level, that the aging body has continuity with the younger, loved individual. Indeed, even though appearance changes, white hair and wrinkles do not suggest a different person, nor do amputations or facial paralysis. Functional losses — such as visual loss and orthopedic changes that prevent the individual from enjoying beloved activities like reading, knitting, or dancing — do not alter a family's perception of the essential nature of the individual. However, as cognition and behavior transform with age and disease, many of the characteristics by which we define our loved ones do change. Families go through two grieving processes: the grief for the loss of particular aspects of personhood and individuality, followed by the inevitable grief over the actual cessation of breathing and heartbeat. In contrast, quality care for the aged is centered on the goal of preserving the essential personhood of the individual as the mind and body decline. The Minimum Data Set obtains this one key element for every nursing home resident on admission: their prior habits and preferences. Times for waking and sleeping, favorite foods, bathing patterns, and typical activities and interests are all identified so that life in the nursing home can best mirror these preferences. The presumption is that the resident does remain the same person, despite losing many of his or her memories and living in a different setting. Continuing prior life patterns may ease the resident's transition into an institutional setting, but just as importantly, acknowledges the resident as a human being whose thoughts, experiences, and wishes deserve respect. Programs such as the highly regarded Music & Memory are based on the evidence that musical preferences and memories are preserved despite advancing dementia. Although a general appreciation for music may be a nearly universal characteristic (providing “charms to soothe a savage breast”), personal musical tastes are very individual as are the memories the music evokes. Bach and Bieber are not interchangeable. Even within a genre, a resident's love for classic rock might not include both the Beatles and the Rolling Stones. Indeed, the resident whose wedding featured the Beatles' “In My Life” might not have an equivalent reaction to “Drive My Car” from the same album. When family and staff preserve a resident's musical memory and tastes, it is an acknowledgment that the person has not departed from the body. Adherence to advance directives generated when the resident was cognitively intact is another acknowledgment of the continuity of personality despite neurologic decline. When we ask a family “what would your relative have wanted if they were able to tell us?” we are asserting a persistence of choices despite the resident's altered ability to understand the current situation or formulate decisions. What are families really saying when they say that the person they loved is no longer there? Sometimes they are suggesting that various behaviors, usually those we may regard as problematic or undesirable, are not characteristic of the loved one they knew. In contrast, families are rarely distressed when their loved one's personality change leaves them more relaxed, cheerful, or cooperative. Unfortunately, the frontal lobe damage associated with dementing illnesses and strokes often releases a variety of verbal and emotional outbursts that years of repression have kept bottled up. These can include colorful curse words, racial and ethnic slurs, physical expressions of frustration and anger, disinhibited expressions of sexuality, and indifference to cleanliness. In her 90s, my wife's grandmother (all 4'8'' of her) tried to strike a nurse's aide with a cane because the aide was preparing to put on the “wrong” shoes. I assure you that she would never have done that when she was in her 60s. Although some have referred to these behaviors as a “second childhood,” they certainly lack the charms of infancy and obviously include phrases (hopefully) unknown to children. Families will frequently say, “I didn't know grandma even knew those words.” Obviously, seeing and hearing these behaviors can be both embarrassing and painful for the family. “That's not my mother” becomes both a description of a behavioral change and an expression of denial. These personality changes are often most difficult for children or other relatives who have not been involved in close contact or day-to-day care. These changes are usually gradual and often bring out aspects of personality that have been hidden from children or other relatives. Cumulatively over time, however, they can appear to be dramatic changes to the family member who visits only occasionally. Adult children often still retain an image of a wise, supportive, loving parent; this image may be more easily preserved at a distance. The role reversal that often occurs when parents age and children transition into caregivers is painful under any circumstances but shocking when abrupt or intermittently experienced. One particularly stressful milestone occurs when the resident becomes unable to identify relatives. The child whose parent is unable to remember his name, or confuses him with a sibling or a stranger, feels emotionally orphaned. Intellectual recognition of the progressive nature of dementing illnesses or the brain damage from a stroke does not fully relieve the pain. Although grandchildren can sometimes adjust to being mistaken for their parents (after all, we may we look or sound like our parents), when a family member no longer recognizes our individual personhood, it may be more difficult to acknowledge theirs. Of course, it is easier for us to approach the resident with advanced disease. Although staff members frequently become emotionally attached to residents (even to residents who sometimes curse and spit), they didn't know the individuals when they were intact. The resident who steals food off others' trays is a scamp, not a family embarrassment. Fecal incontinence is simply a low Activities of Daily Living score. The resident smearing a pureed diet on his or her clothing needs a care plan modification to increase assistance with feeding. “Supervision” is a care task, not an awkward role reversal. Yet even in the nursing home, caregivers are often reluctant to acknowledge the declines that have continued since admission or the resident's terminal status. What can we, as caring professionals, do to decrease caregiver suffering? First, we need to acknowledge and validate the caregiver's pain. Witnessing the gradual decline of a loved one is, indeed, a torturous process. Simply listening can be therapeutic. But secondly, we need to assert the continued value of the lives of our residents. They are not “vegetables” and we are not gardeners or wasting our time providing care for those not worthy of our time. This assertion is particularly important because there is much that the concerned family can continue to do to improve the lives of their loved ones. Many of these are services that we can't perform, so there is ample justification to try to keep the family involved in the nursing home rather than (or in addition to) referring them to the nearest therapist's couch. For example, although memory for names may be lost, the persistence of auditory memory means that residents may be pleased and soothed by family interactions and familiar voices. Even comatose patients show physiologic responses to loving expressions and encouraging phrases. Moreover, families can offer physical expressions of affection that are largely, by social and legal conventions, denied to our bedside staff. Physical touch from another human being relieves anxiety and reduces stress hormones. The elderly husband who simply sits at the bedside and holds his wife's hand provides powerful therapy. The troubled daughter should be encouraged to kiss her mother and express her love. Certainly education plays a role here as well. Families rarely receive useful information about the nature of dementia, such as prognosis, stages, and complications. Knowing what to expect — the course of disease rather than the details of Tau proteins and neurofibrillary tangles — may help to cushion the shocks as they occur. Nursing homes should offer family support groups that provide both education and opportunities to share emotional burdens. A relatively small investment of time can provide relief for the stressed family, reduce confusion over the reality of functional decline, and decrease the need for overworked and underprepared unit staff to explain behaviors. Nursing homes frequently complain about problem families. Acknowledging these family issues and providing a gentle, guiding voice to support the grieving process are opportunities to prevent them. Dr. Nichols is president of the New York Medical Directors Association and a member of the Caring for the Ages Editorial Advisory Board. Read this and other columns at www.caringfortheages.com under “Columns.”