Lived Experience Caring for Amish Older Adults
Six major themes emerged from participants' lived experiences of caring for Amish older adults. The community elder and participants are partners in the research findings and, to respect the collaboration, the themes are preceded by a key phrase from a participant. The semi-structured interview guide used collected demographic information about the caregivers and care recipients, care recipient disease diagnoses, and descriptions of the caregiving environment (Table). Male (n = 6) and female (n = 9) caregivers most often related their experiences of problem solving and how they managed working with other caregivers in the Amish community.
“Blessing to Feel Good”/Caregiver Perspectives on Health and Illness. When asked to define health and illness, participants remarked that diet, exercise, and rest were associated with health and poor eating habits, stress, and worry were associated with illness. Caregivers discussed their own choices as either generating health or illness, and measured their health and illness with physical descriptions, explaining that health and feeling good were a blessing. Participants reported good nutrition, use of supplements, and self-care as essential to good health. They considered good health as being able to work or be active. When discussing illness, there was a similar pattern of describing personal actions as causing illness and physical descriptions of illness. Illness was caused by “thinking on things too much” and individuals who “eat junk food all the time,” and signs of illness were described as “when you look pale” and “sometimes the whites of their eyes aren't white, they are yellow or blurry.”
“Taking Responsibility”/Assuming the Role of Caregiver. Participants discussed physical and emotional changes in care recipients that led to their caregiver role, using descriptions such as “it was time” or “the need was there.” Participants discussed how it was necessary to share the responsibility to maintain other roles, such as caring for young children, working outside of the home, or attending church and community activities. They often discussed becoming a caregiver when the care recipient was unable to participate in church or work activities, explaining, “her being on her own wasn't meant to be,” “we took more responsibility when the time came,” and “we started helping when they weren't able to do it themselves.” No emphasis was made on a specific change in the health status of care recipients due to disease or illness and these details incidentally were mentioned only through the course of the interview.
Other features of the caregiving role were being willing, taking turns, making sacrifices, being empathetic, reciprocity, accepting consequences of changes in health status, getting rest, and losing balance in life roles (e.g., participants believing they were not good mothers or wives because of the increased care demands of the care recipient). Regarding their experiences with health care systems outside of their community, participants described having to find transportation during crises, concerns about cost, mixed feelings about home care services and sharing and using equipment, frustration during discharge, need for more knowledge, and perceptions of health care outside of their community. Descriptions of their caregiving experiences provide insight into how a generic approach to caregiving support from non-Amish providers is insufficient to meet the unique cultural needs of this population of caregivers.
“Schuldigekeitt”/Meaning of Caregiving. When asked to describe why caregiving is important to them, all participants described the role of caregiver from a responsibility perspective and as a manifestation of their cultural values. Schuldigekeitt is a German word meaning duty or to do one's duty (Kueny, 2011), and participants typically paired one-word statements such as “privilege” and “gift” with a definition of what Schuldigekeitt means to the Amish (e.g., “responsibility, when we were young they took care of us and now that they are older…we should take care of them”). Throughout the interviews, there was a clear declaration that participants “want to take care of our old people, not put them in a home” and “if at all possible, you want to keep at home.” Although participants seemed to recognize the term “caregiver,” there was no distinction made between types of caregivers or caregiving as an official role. The act of caring was described as a shared responsibility (e.g., participants simultaneously described the use of schedules and how other community or family members helped so they could continue to work, meet other family obligations, or attend church services).
“It's the One Thing I Can Still Do for Her, that I Can”/Rewards of Caregiving. When asked about rewards or positive aspects of being a caregiver, descriptions often emphasized how meeting the individual care recipient's needs provided a sense of satisfaction, as one caregiver explained: “When we can both feel at the end of the day we did our best…no matter if there are ups and downs.” Participants often related caregiving anecdotes that expressed gratefulness and overcoming difficult care recipient behaviors. For example, one participant described a good day as one that followed a night during which everyone was able to rest (normally the care recipient was awake throughout the night, repeatedly trying to get up to wander or go to the bathroom).
“When You Just Couldn't Do Nothing Right”/Difficulties in Caregiving. Difficult caregiving experiences often included problem-solving situations in which the caregiver felt inadequate about knowing how to respond in the caregiving role. No participants used the word “burden” to describe caregiving experiences; however, during interviews, there were nonverbal expressions of sadness such as looking down, tearful expressions, and repeated pauses in speech that indicate other emotions that could be explored in future studies. Most participants discussed how a lack of older adult caregiving experience was associated with a lack of confidence in their decisions. Often, retrospective statements about their feelings coincided with expressions of inadequacy (e.g., “If she was in a lot of pain and we didn't know what you could do to ease it…that was difficult” and “when you just couldn't do nothing right”).
“There Was Not Understanding”/Interactions With Health Care Providers Outside of Their Community. Many participants indirectly referred to their interactions with health care providers and systems outside of their community. The interviewer asked direct questions about the type of care received outside of their community and caregiver impressions of their interactions with providers. These stories usually included confusion about home medication regimens, concern about paying for services, access of services, and mixed opinions about services.
Three of 15 participants expressed confusion with home medication regimens, and others explained that discharge instructions were difficult to understand and mistakes resulted when providers did not listen. For example, one participant said that she lost trust when “the nurse gave him [sulfonamide] drugs and he had an allergy.” Further, the provider “brought his medications in applesauce in just a little cup for me to give…. I gladly did it rather than have him try to feed him all of that; there was not understanding.”
Paying for services was an important topic during interviews. Participants related stories of negotiating payments from a financial and cultural perspective. Multiple stories explained the ongoing Amish debate about using medical insurance outside of the Amish community. One participant remarked that the high cost of health care services outside of the community challenged the cultural value of only using Amish community funds, saying, “It just goes so high, too expensive, and we try not to use the state money but sometimes people do.” Other participants expressed frustrations with trying to understand payment systems, with one saying, “One thing dad has griped about is getting bills later on that he didn't know about when he thought he had taken care of it.” Participants also related how they “write on the check ‘paid in full’ and that way they can't come back” and “usually we ask for a discount if we can pay in full” to work with outside systems. There was universal concern about the high cost of services and inconsistencies in how different systems would work regarding payment. One participant related, “I want to pay my bills but sometimes it seems outrageous. You don't think much about little bills but when a big bill comes you start to think.” Several participants voiced a preference for working with local individuals to negotiate payment, with one saying, “It just makes a difference if there's an office with someone you can talk to face to face” and “bills go to Ohio but you call California so you know it's a conglomerate and they only care about money. They said to talk to the Amish elder…. That's all they know to say.”
Comments regarding access of services reflected the cultural value of separation from the outside world and anxiety about these interactions. Responses to questions about when participants might see a provider outside of the community included “if there was a dire need, he went” and “not unless it was absolutely necessary.” One participant said an appointment with a health care provider outside of the community caused so much anxiety that “he didn't sleep all night before the appointment and when he came home he slept all afternoon…. He said they always gave him stuff that made him sick.”
Participants expressed mixed opinions about interactions with health care providers outside of their community in the home setting. Participants related a mixture of feelings, such as “wonderful” and unease (e.g., “some of them spent more time than others” and “we liked them okay except those two nurse aides who were so rough with him; he just knew they were going to roll him out of bed”). The most prominent difficult events encountered were financial, transportation, and equipment issues. Several participants discussed the difficulty arranging for home oxygen equipment that was not dependent on electricity, discharging from inpatient care without time to arrange for a driver to take them home, or confusing actions on the part of emergency medical services. These discussions highlighted an Amish pragmatic perspective on focusing on the details of a problem. For example, when explaining paramedic services, one participant remarked:
They just drove around, they didn't know their roads…and it took over 20 minutes to get there…pathetic…then got there, they had to send him right away so they called a helicopter and took another 20 minutes to get him to town for that and they could have been halfway there if they had just gone…. It just didn't make sense.