July/August 2009

Forgotten Partners: Overlooked at the End
By Florence Gelo, DMin, NCPsyA
Aging Well
Vol. 2 No. 3 P. 18

Older adult patients and their partners both deserve professional consideration related to concerns associated with patients’ treatment and care.

Modern medicine favors curative treatment rather than palliative care. When cure is no longer possible, physicians often find it difficult to transition from cure to comfort and quality of life. A successful transition requires creating an individualized care plan that considers the needs and desires of both the patient and the caregiver. The process includes discussions about values, goals, and treatment options in which emotional, social, and spiritual concerns become paramount.

Scenarios similar to the one that follows play out all too often as partners of older adults suffering from dementia or terminal diseases struggle to cope with caregiving responsibilities. Often in need of considerable support themselves, these dedicated partners frequently ignore their own physical and emotional needs. And in their efforts to meet the needs of the patient, professionals often overlook the genuine pressing needs of these partners. This is the case in Michael and Mira's story.

Michael stood behind the sofa where Mira, his wife of 47 years, sat watching a daily wildlife television program for children. He heard her chuckle, her eyes fixed on the image of a baby goat snuggling in the white-spotted underbelly of a beefy, brown shorthaired boxer. As he watched her, she seemed peaceful and content, in sharp contrast to her harried state earlier that morning—tears, a bowl of oatmeal cracked on the kitchen floor, soaked towels lying on the bathroom rug, a facial bruise from broken eyeglasses, body shaking, arms hitting and pushing, igniting fears and larger questions.

Michael has cared for Mira in their home for more than four years. He hired an aide for a few hours per day so he could work outside the home to keep his health insurance coverage. The remainder of each day, along with evenings and weekends, Michael bathed, fed, entertained, and reassured Mira, staving off the emotional space that was growing between them.

Recently, he pulled photographs of their two children—now grown with children of their own—from a dusty cardboard box. He told Mira stories of 2-year-old Tess watching a naturalist band birds, capturing the image of a red-tailed hawk, as well as of Michael, Jr. standing shyly with a park ranger during a road trip to the Grand Canyon as part of a family gathering for great-grandma’s 101st birthday. Mira smiled, uttering words about the hawk’s brick-red coloring and sturdy hooked beak. Michael, taken off guard, fleetingly delighted in this moment of conversation as he had so many times before, until Mira began repeating those same few words over and over again.

Michael believed that he could care for Mira in their home as long as necessary, even as a growing loss of his sense of self emerged. He was working less and less, rarely attending worship services or social gatherings with friends, no longer playing tennis or jogging in the neighborhood. Unable to leave Mira alone, Michael felt lost to himself. He slept restlessly, one ear always attuned to Mira’s movements, especially since the onset of her frequent night walking. Having lost 20 pounds, Michael forced himself to eat despite his lack of appetite. He wept with no provocation and felt completely unable to gain control of growing feelings of pessimism and sadness.

Although awareness of a philosophy of palliative care has recently increased, it is still not offered to or provided for many who could benefit from it. In Mira’s case, her physicians provided treatment to restore cognitive function until her dementia was judged to be irreversible. When a cure was no longer a possibility, managing her anxiety, agitation, and aggression became the primary goal.

Michael assumed full caregiving responsibility for Mira. He provided transportation to and from appointments, shopped for food, cooked meals, did the housework, and maintained a safe environment by installing locks on cabinets, removing loose rugs, and placing a bell on the outside doorknob each night before bed. Michael developed a successful personal care routine for dressing and bathing. He kissed and hugged Mira and held her in his arms. They prayed together for wellness of spirit.

Healthcare teams frequently fail to address the intense demands of daily caregiving. For the most part, healthcare practitioners overlook what caregivers have left behind in the wake of their efforts in symptom management. They remain unaware of the real-life personal struggles and the emotional toll of profound, perpetual grief.

Although Mira was diagnosed with a serious illness, she was ineligible for hospice care because dementia without other health issues is not considered a life-threatening diagnosis with a life expectancy of six months or less. Therefore, she could not benefit from hospice-based palliative medical care, nursing care, spiritual care, and social worker visits.

Michael’s primary care physician encouraged him to consider placing Mira in a nursing home. At first, Michael was reluctant, but he was later relieved when he was given permission. But then heartache set in. Since her admission to a nursing home, he has lived as a widower without actually being one as he battles severe grief and nightmarish thoughts. “I find myself wishing she would die, wishing she would have a heart attack,” he says. Mira has no other life-threatening medical conditions, suffering only from dementia. How long Michael will remain in this liminal state is painfully uncertain.

Taking care of Mira took all of Michael’s time and gave him the satisfaction that he was doing something for her. Once Mira moved to a nursing home, Michael’s role focused on supervising nursing home staff to ensure they provided her with the care and attention she required. In most long-term care facilities, the ratio of professional caregivers to patients is inappropriate for the level of dementia. Because the nursing home staff often didn’t have time to individualize Mira’s care, Michael arrived with her favorite chocolate bars and spent time giving her foot and back massages. Although Michael visited daily, he always felt he hadn’t done enough and never left dry eyed, always cradling memories that tied his stomach in knots.

Michael exemplifies the many spousal/partner caregivers who are overlooked by the healthcare system. Although most healthcare providers are well aware of the tremendous stress and isolation imposed on caregivers of family members with dementia, Michael’s neglect stems from his invisibility. This neglect is a function of the inadequacies of the healthcare system and the inability to care for individuals who don’t fit the structures of existing services.

When Mira was living at home, Michael could rely on community services to provide aides to assist with bathing, eating, and enhancing home safety and offer him respite and an opportunity to leave home to work for a few hours each week. His inability to anticipate Mira’s behavior or moods caused him to avoid relying on family, friends, or neighbors for assistance. And he acknowledged that communication with Mira was challenging and required knowledge and skill that could be obtained only through regular interaction and rapport with her.

Additionally, because such services are often unfunded or inadequately reimbursed by health insurance, support to Michael for Mira’s care depended on personal finances and healthcare benefits. Unless he took the initiative to identify and utilize resources, he received no specific outreach. At the end of most days, Michael, like many primary caregivers, was often sleep deprived, physically exhausted, grief stricken, socially isolated, and depressed because he could see no end to his caregiving responsibilities. Because caregiving for a loved one with dementia can continue for a number of years, chronic stress can lead to alcohol abuse and adverse effects on mental and physical health.

Hospice offers an option for care. Eligibility for hospice care requires certification from a physician that life expectancy is less than six months. The National Hospice and Palliative Care Organization developed the following admission criteria for dementia patients:

• inability to ambulate without assistance;

• inability to dress without assistance;

• urinary and fecal incontinence that’s intermittent or constant;

• inconsistent meaningful/reality-based verbal communication; and

• at least one of the following conditions within the previous 12 months: aspiration pneumonia, pyelonephritis or other upper urinary tract infection, septicemia (blood infection), decubitus ulcers (bed sores), a recurrent fever following antibiotics, or an inability to maintain sufficient fluid and inadequate nutrition demonstrated by either 10% weight loss during the previous six months or low blood levels of nutrients.

During the years that Michael cared for Mira at home, she did not meet the criteria for admission to hospice. Yet her decline was evident, and caregiving became progressively more challenging. Michael’s decision to transfer Mira from their home to a long-term care facility was precipitated by a recommendation from Mira’s physician. Safety became a significant concern.

Nevertheless, the decision was fraught with challenges. Michael recognized the growing need for constant care and home modifications to increase safety, yet he was managing these demands and ignoring the impact on his own health and well-being. Before speaking with his doctor, he was uncertain about when he should begin to consider placement in a long-term care facility. He did not know whether other medications or innovative treatment options were available to control Mira’s behaviors and help her sleep, nor did he have adequate knowledge to realistically anticipate Mira’s future decline. A comforting strategy for anticipating and addressing the possibility of placing Mira in a long-term care facility or nursing home would need to include information about treatment options that might provide an alternative. In fact, a 2004 report of survey findings by Novartis Pharmaceuticals Corporation and the Alzheimer’s Foundation of America suggests that it is difficult for caregivers to obtain trustworthy information on which to base treatment decisions and to trust their “ability to make them wisely and lovingly.”

Mira’s placement in a nursing home did not completely alleviate the burden of care that Michael experienced. Although Mira received round-the-clock care, Michael visited her daily at meal times and remained with her until bedtime. He no longer had Mira by his side, nor could he rely on moments of respite in his own home. He felt guilty and inadequate for having abandoned Mira to a nursing home. Where he once cared for Mira in their home, he became a commuter multiple times each day, arranging all outside interests and responsibilities according to the nursing home calendar and schedule. But Michael had no support to help him cope with his stressful situation.

Consider these statistics obtained from the survey assessing caregiver burdens:

• Ninety-four percent of those surveyed said that caring for someone with Alzheimer’s disease changed their lifestyle at least somewhat; 70% said that it changed their life a great deal.

• A large percentage of caregivers (81%) said they felt overwhelmed by their loved one’s condition, and most worried that they were the only source of care (68%).

• Only one half or fewer relied on an outside source of support such as a home health aide (50%) or family and friends (45%) for help to provide care for their loved one.

• A majority of caregivers said they were interested in more community support services, yet only one in four (25%) had joined a support group.

Approximately 4.5 million people in the United States live with dementia. Alzheimer’s Disease International, an umbrella organization for Alzheimer’s disease associations around the world, suggests that by 2030, this number will increase to 7.7 million. These increasing numbers, combined with the advances in medicine and technology that enable people to live longer into frailty, will most likely result in increased incidence of home care for loved ones suffering from dementia.

What services are available to assist Michael and other caregivers as they battle the emotional distress and isolation frequently encountered during the years of caring for their loved ones suffering from dementia?

For example, the Caregivers of New Jersey Caregivers Summit facilitated a dialogue in four specific topic areas: caregiver health, economic impact of caregiving, access to services and resources for caregivers’ education, and training for caregivers. The comprehensive recommendations include the following:

• Caregiving issues must be at the forefront of New Jersey healthcare, long-term care, and social service policymaking and be included in all legislative platforms and debates.

• Caregivers face enormous economic challenges and must be protected from the financial consequences of caregiving and be supported by “family-friendly” workplace policies to help meet their caregiving responsibilities.

• Caregivers must have locally available, ongoing education and training that address the multitude of needs identified by caregivers and their families.

• Caregivers must be able to access an integrated system of high-quality, affordable resources and support available within their communities that are culturally appropriate and responsive to the diverse needs of caregivers and their loved ones.

• Caregivers’ health and well-being are essential to good caregiving and require an understanding and educated public, along with appropriate resources and support to encourage overall physical and emotional well-being.

• A well-trained, affordable, available healthcare workforce that understands the needs of caregivers and their loved ones must support caregivers.

Though each of the efforts above is crucial to the successful support of caregivers like Michael, a more immediate remedy could be provided through services from the nursing home where Michael frequently visits Mira. For example, on Mira’s admission to the nursing home, an assessment of Michael’s needs could be made to assist him with the transition. Counseling could be provided to address the variety of emotional issues with which Michael is struggling, including dealing with anxiety, depression, grief, and loss. Support groups could provide a forum for caregivers to share their feelings in an informed and supportive environment. Workshops, lectures, and other educational programs could offer Michael information about the progression of dementia, self-care skills, and coping strategies and provide bereavement care following Mira’s death. If a nursing home is not able to provide these services directly, referral assistance to community resources could be provided and a database of support groups, counselors, and training workshops could be created and maintained.

In addition, it is important for Michael to understand what medical decisions are being made and what treatments are being provided. Ongoing communication with Michael can ensure that Mira’s preferences, values, and goals are respected as her disease progresses and new medical decisions arise, such as whether to refuse life-sustaining treatments such as antibiotics or to determine when hospice care becomes appropriate.

This combination of services can help caregivers by reducing stress, providing assistance with coping mechanisms, improving quality of life, and helping caregivers to continue to provide love and support to their loved ones while regaining balance and a sense of the future for themselves.

— Florence Gelo, DMin, NCPsyA, is an associate professor in the department of family, community, and preventive medicine at Drexel University College of Medicine in Philadelphia.