The caregiving experience is highly individual and dependent on personal and family circumstances. These vignettes and personal stories describe the experiences of real individuals caring for an older adult.
WHEN AN OLDER ADULT HAS DEMENTIA
One Daughter’s Experience1
Before Mom moved in . . .
“We are busy with Social Security, Medicare, lawyer, bank, apartment prep. From what I’ve heard, Mom is doing pretty well. Her down times seem to come and go, but the delusions don’t seem to be quite as dark. When speaking to her on the phone she seems genuinely happy about moving to New York and living with us.”
After Mom moved in . . .
“It’s been stressful for quite a while. I cared for dad, my 2 uncles, and my husband. My husband is helping me so much now by being a great
1 As the committee began its work, Ruthie R. offered to share her emails to her cousin (a committee member) documenting her ongoing journey of caring for her mother after she had been diagnosed with dementia. The following are excerpts covering a more than 4-year period between April 2009 and January 2015.
shopper and chef. Mom has gained about 11 pounds since coming here. Much of what I’m feeling is the slow release of years of stress. Writing down my thoughts is new to me.”
After a hip fracture . . .
“I am so angry that my head might explode. At about 5:30, I was handed a bunch of papers by the head of the rehab department at the hospital where my mom has started physical therapy. We all thought this was a great idea. But apparently her Medigap policy denied this coverage. I have requested a ‘fast track’ appeal. She has already started the rehab work 2x a day. I hope they keep going with the treatment while this nightmare unfolds. I hate this.”
While she was still at the rehab center . . .
“Mom did well in physical therapy, on her second day. She walked up and down the hall with a walker, according to her roommate, a former home health aide herself. I have one question. She keeps getting up out of bed, even though her bed and wheelchair are alarmed. The alarms don’t phase her. It doesn’t seem to stick when she is told to stay in bed, or not to stand up. . . . The staff come in to help, but a momentary delay could produce another fall (god forbid) . . . thank goodness for her roommate who is incredibly patient. Are there other devices/methods? Suggestions? I’m wondering what can be done at home too . . .”
After she returned home . . .
“Generally, things are good. There’s an element of unknown that we deal with all the time. Schedules mean nothing unless there’s an appointment, etc. I know I’m supposed to have a ‘regular’ schedule of things to do, but her energy changes from day to day—moment to moment. I’m rolling with it, and trying not to overthink and let her direct whenever possible.”
After 1 year at home . . .
“I’ve lost my career. I’ve got permanent WIWAS (Will I ever Work Again Syndrome). It really has me down today. Sure, I think about working. I have help a few hours a day, I should be able to do something. But thinking about being among (young) people, wondering if I still have the skills, worrying why anyone would want to hire me, I break out in hives. I’m a pretty good caregiver, bobbing and weaving my way through bureaucracies, tracking down answers to questions with dogged determination, tackling
confusing paperwork, keeping it all straight, trying to get what I can for my mom, with appointments, keeping her happy, well-fed, and somewhat on track, I haven’t been polishing my skills, resume or portfolio. I should feel good about caregiving and the work of getting to this point with her. Just 2 years ago we were in a desperate place.”
After 4 years . . .
“Things are at a slightly different stage. Mom has slowed down, with a little more confusion at times, more sleepiness, less balance, more use of the walker especially outside. She is still very sweet and has a smile and a nice word for everyone. Thank goodness for the St. Charles Senior Center, where they talk about how remarkable Sylvia is, and how they all love her. Rarely is she agitated, but it happens.”
A Husband and Father with the Challenging Behavioral Symptoms of Dementia2
“Gabriela and Saúl have five daughters, all of whom lived in the same city as their parents. While all of the daughters participated in caring for their parents, they assumed different tasks: one daughter handled her father’s medical appointments and other professional care; one oversaw finances and bill paying; and the other three took care of groceries, meals, household repairs, entertainment, and social outings. Every week, one daughter, Yolanda, spent one of her days off from work with her mother, taking stock and planning for the forthcoming week.
Sometime after his physician diagnosed him with Alzheimer’s disease, Saúl began to exhibit aggressive behavior. He was put on psychotropic medications that helped some but tended to make him tired. Two of Saúl’s behaviors were especially distressing to Gabriela. One was his lack of hygiene and resistance to bathing or wearing clean clothes. He insisted on wearing dirty pajamas to adult daycare. The second difficult behavior was his obsession with paper. Wherever Saúl went, he collected old newspapers, free brochures, and pamphlets, grabbing handfuls that he stored at home on shelves and in filing cabinets and dresser drawers. Gabriela could no longer put away clothes or other items. On garbage pick-up days, Saúl scrambled through bins to retrieve any papers that she had thrown away. Gabriela tried continually to bathe him or help him into a clean shirt.
2 Apesoa-Varano, C., J. C. Barker, and L. Hinton. 2012. Mexican-American families and dementia: An exploration of “work” in response to dementia-related aggressive behavior. In Aging, health, and longevity in the Mexican-Origin population, edited by J. L. Angel, F. Torres-Gil, and K. Markides. New York: Springer. Pp. 277-291.
On these occasions, Saúl would yell ‘strong words’ at her or get angry. Gabriela surreptitiously threw things away, placing them in big plastic bags in the garage for her daughters to remove when they visited. Saúl’s hoarding behavior triggered his first incident of violence. One day while he was at adult daycare, an office attendant tried to stop him from taking office records and documents. Saúl grabbed her by the throat and tried to strangle her. On another occasion, Gabriela was struggling with Saúl over a broom that she had been using when he grabbed it in a threatening manner and yelled at her. Very frightened, she locked herself in her room and called her daughters.
Gabriela was continually worried and stressed. Yolanda often gently reminded Gabriela that they had learned that aggressive behavior was an aspect of Alzheimer’s disease and that it would get worse. She urged her mother to be patient and to not take Saúl’s behavior personally. Yolanda would patiently explain to her mother that ‘He knows that he doesn’t want something to happen but he no longer has the ability to articulate that he doesn’t want something taken away from him, so he resorts to showing it by getting angry.’ While agreeing, Gabriela would nevertheless say, ‘it’s that I just can’t get it into my head that he’s not the same man. I just can’t!’ Gabriela delegated the management of Saúl’s behavior at daycare or outside the house to her daughters. ‘I am getting old,’ she said, ‘so don’t let me know what goes on there at [the daycare center] because it could give me a heart attack.’ Gabriela feared not only for her own safety but also that the daycare center would no longer accept Saúl. She also worried that her difficulties managing Saúl’s behavior would make her appear unfit to care for him and lead to his institutionalization.”
A WIFE HELPS MANAGE HER HUSBAND’S CANCER TREATMENT3
“Marjorie was a caregiver for her husband Ralph during his treatment for cancer. Marjorie and Ralph are a couple in their late 60s who live in a rural area 60 miles from any cancer specialist and hundreds of miles from a cancer center. Marjorie’s caregiving experience was characterized by intense involvement during periods of active treatment punctuated by interludes when Ralph was feeling well and life returned to some semblance of normal. The intensive periods of caregiving involved assisting with self-care, providing emotional support, performing medical and nursing tasks, frequently driving long distances, identifying and coordinating home
3 Schumacher, K., M. Z. Cohen, B. S. Fletcher, and W. M. Lydiatt. 2010. Family caregiving in the car and away from home. Paper presented at Council for the Advancement of Nursing Science State of the Science Congress on Nursing Research, Washington, DC.
care services and other community resources, navigating local and distant healthcare systems, working out financial arrangements for cancer treatment, and applying for Medicaid. Marjorie served as the eyes and ears of health professionals when acute changes in Ralph’s condition occurred at home. She monitored Ralph’s condition, communicated her observations to doctors and nurses by phone, and took Ralph to an emergency room when necessary. Even during the interludes of more normal life, Marjorie remained vigilant about Ralph’s health and well-being.
When Ralph was initially diagnosed with cancer, he was treated with surgery followed by radiation and chemotherapy. He was found to have diabetes during his hospitalization for surgery. He was discharged from the hospital late in the day, so the first time Marjorie tested his blood sugar and administered insulin without a nurse present in the car; it was dark during the 6-hour drive home. At home, Marjorie monitored the surgical incision and when she noticed drainage, she reported it to Ralph’s physicians. She coordinated the treatment plan for the draining incision with physicians near home and the oncologic surgeon in the cancer center 6 hours away, and carried out their instructions at home. After the incision healed, Ralph received his radiation and chemotherapy treatments closer to home. However, the closest radiation treatment facility was still too far away to drive daily, so Ralph and Marjorie stayed in a motel 5 days a week, returning home on the weekends. Marjorie did the driving, played a key role in managing the radiation and chemotherapy side effects, tried to make sure Ralph got good nutrition in their temporary living quarters (taking into account that he had diabetes as well as cancer), and tried to think of ways to keep their spirits up while away from their family and friends. Constant vigilance was required, as Ralph suffered from severe nausea and vomiting and had an episode of delirium as a side effect from one of his medications.
Following the radiation and chemotherapy treatments, Ralph and Marjorie enjoyed an interlude of nearly normal activities at home for a while. However, the cancer recurred a year later. After considering all the alternatives, Ralph chose to have additional surgery, followed by more radiation and chemotherapy. The specialized treatment and follow-up meant traveling to the distant cancer center. Once again, Marjorie and Ralph lived in a motel room. More caregiving was required this time, including managing tube feedings, oxygen equipment, oral suctioning, and a regimen of 10 new medications, in addition to constant vigilance, symptom and side effect management, and emotional support. Marjorie provided a level of family caregiving that makes modern cancer treatment possible for rural-dwelling individuals.”
TWO STORIES OF JOB DISCRIMINATION4
“One caller to WorkLife Law’s employee hotline took intermittent Family and Medical Leave Act leave to care for his wife. After he informed his employer that his wife would be going on long-term disability, his new supervisor told him that he must be in the office from 8 a.m. to 5 p.m. and that he could no longer flex his hours, telecommute, or work from home—despite the fact that the employer permitted and even encouraged all similarly situated employees to do so. The caller had been telecommuting, working from home, and flexing his hours for well over a decade with no detriment to his performance.”
“The largest individual jury verdict in an FRD [Family Responsibilities Discrimination] case to date ($11.65 million) involved a hospital maintenance worker, Chris Schultz, who was fired in 2002 while caring for his father with Alzheimer’s disease and mother with congestive heart problems and severe diabetes. To help manage his parents’ care, he asked to take intermittent leave, to which he was entitled under the federal Family and Medical Leave Act (FMLA). While he was on leave to care for his parents, his supervisor suddenly instituted a new quota system that was impossible for Schultz to meet. As a result, Schultz was fired for poor performance after 26 years as a dedicated employee with a record of excellent evaluations—the year before he began taking leave, his picture hung in the lobby as the hospital’s outstanding worker of 1999.”
4 Williams, J. C., R. Devaux, P. Petrac, and L. Feinberg. 2012. Protecting family caregivers from employment discrimination. Washington, DC: AARP Public Policy Institute. http://www.aarp.org/home-family/caregiving/info-08-2012/insight-protecting-family-caregivers-from-employment-discrimination-AARP-ppi-health.html (accessed August 23, 2016).