Three themes highlighted what the family members perceived as their responsibilities toward their loved ones in a nursing home:
The themes do not apply equally to all family members but do reflect common feelings held by many of them.
Overseers of Care
Many family members believed it was their responsibility to oversee the care provided by the staff to their family member. Spouses, siblings, adult children, and other family members made numerous comments about their expectation that their loved one would receive “basic care” in the nursing home. Family members used the term basic to mean the kind of care the family would provide at home, if they were able. In response to the researcher’s question about the care received by her bed-bound mother, one daughter commented, “It’s not a party, but it’s good basic care.” The family members’ comments pertaining to basic care can be grouped into the following categories: timeliness of changing soiled bedding and clothing, noticing a change in health status (e.g., fever, coughing, paralysis), help with repositioning, spending time with the resident while providing care (not rushing), treating the resident with respect, and cleanliness.
The extent to which the family members held themselves responsible for overseeing and seeking information about their loved one’s care varied widely. Some took on a surveillance role and wanted to be involved in daily decisions, whereas others took a more hands-off approach and assumed everything was going well unless the resident or a staff member mentioned otherwise. An example of the latter was the brother of a resident in her 90s; he was satisfied his sister was receiving good care because she had survived longer than he had expected. He said, “She’s been out here 10 years. They keep her going. They call me if she has a fall or something…. I think she is getting good care…. She’s been here 10 years; that’s testimony in itself.”
Family members’ assessment of the care their loved one received also varied enormously. In both nursing homes, some family members were pleased with the care, and others reported it was awful. Most families seemed to have mixed feelings. They were not upset enough to move the resident but were frustrated by things they thought would be easy to improve, such as removing a resident’s dentures after a meal, washing a resident’s hair, or giving a resident a drink of water.
Overseeing care included noticing when care was good. Some families in both nursing homes expressed deep gratitude toward the staff members, primarily direct care staff, for the care their loved one received. For example, looking back on the last days of his 90-year-old mother’s life (the resident had battled cancer for 10 years), a son commented:
The most helpful thing to me was the nurses at mom’s nursing home. Especially 2–3 of them were incredibly helpful. You can’t get all good ones, but mom sure had good ones…. They just lived there with mom. Anytime I walked into her room, they would be there in the room with her. They would be helping her, and that gave me a lot of peace of mind, that mom had good care. They called me anytime to let me know that something happened to her, and that gave me some peace of mind—to be in the loop and to understand what was going on.
When family members saw that basic care was being provided to their loved one, their trust in the staff increased. When good care was not consistently provided, trust in the staff dropped. Being able to trust the staff was an important step in family members’ achieving and maintaining peace of mind.
Cleanliness as a Proxy for Good Care. Most family members in both nursing homes commented to the researcher about highly valuing cleanliness. The family members were pleased and indeed proud that the nursing home where their loved one lived was clean. Family members also wanted to see their loved ones kept clean. They wanted to see clean hair, a clean face, a clean mouth, clean fingernails, and clean clothes. Seeing their loved one kept clean was foundational evidence of good care.
Seeing their loved one unclean raised suspicions about overall care. One daughter said, “Yes, I am pretty much satisfied, but I don’t like to come in and see eye crud, dirty ears, my mom’s nose not clean. These are the things that are easily seen by staff members, and yet they are not clean, so it just leaves the rest to my imagination.”
Staffing Concerns. The family members’ holding themselves responsible for overseeing the provision of care to their loved one was complicated by staffing challenges. The need for more direct care nursing staff was mentioned many times by many family members in both nursing homes. One said, “They could get more help; there is not enough…. At night, you don’t see anyone here…. Mom says from 11:00 p.m. [to] 7:00 a.m., you don’t see anyone.” Another family member reported:
Like the other day, she [my mother] was coughing. I asked, “Does my mother have a cold?” They said, “I’ll check the chart and tell you.” Nobody came back to tell me. That bothers me.… The only nurse is passing out medication—[so the nurse] can’t leave. You can’t find them at the nurse’s desk. I walk up looking for someone, [and] there is no one there. And don’t even talk to me about weekends or evenings. They don’t have enough people working.
Through their experiences of overseeing the care of their loved one, the family members in both nursing homes believed that a lack of nurse aides was a direct obstacle to the residents’ receipt of care. It is unclear how other factors may be contributing to the lack of prompt attention to residents’ care needs, in particular, the frequently mentioned needs related to continence and repositioning. As far as many family members were concerned, dependable and knowledgeable nurse aides are essential for adequate care. The following comment reflects the family members’ connection between lack of staff and poor resident cleanliness and, therefore, poor care. This woman captured the sentiments of many family members attending a family council meeting, who nodded in agreement:
I will never get used to coming in here and seeing my mom lying in her feces. That is not right. That is not good care. I don’t care what anyone says…. I can tell you right now, that is not care. It makes a person want to sue the nursing home. And it is because of not enough staff. It isn’t right…. Staff may have 10 or 20 people to care for, but she is the only mother I got [sic], and I don’t like her sitting in feces.
Other family members expressed their feelings about the lack of staff as life-or-death issues. One daughter expressed the following frustration:
A social worker once asked me if I would want my mother to be revived if her heart began to fail. My response was this, “What is the difference? When it takes 30 minutes for someone to respond to the emergency button, there will be no need to revive her—by then she’ll be gone.”
One son wondered if his mother’s life was cut short because of poor care. After his mother died, he hired a lawyer. He considered filing a lawsuit against the nursing home for poor care, which he believed led to his mother’s death. He was deeply concerned about the response time for meeting his mother’s basic care needs. He became frustrated during visits to the nursing home by call lights that went unanswered and when he saw residents, including his mother, laying in soiled clothing. While his mother was alive, he spoke with the nursing home administrator, who said there was not enough money to hire more staff. Rather than considering it a budgetary issue, the son considered it a “human rights issue.” He explained, “What is a family supposed to do? How are you supposed to support your family when they need more help than you can give them?”
Representatives of the Resident’s Perspective and History
The second theme related to family responsibilities toward their loved ones involves representing the resident’s perspective to the staff. Although staff members know the facility and its protocols and rules and are learning about the residents in their current conditions, it is the family who knows the personal and health history of their loved one. The families’ connection to the resident had developed over decades; in some cases, over more than half a century. Family members remember which of the resident’s hips was operated on and when. They remember medication allergies. They know the long struggle with cancer or diabetes or dementia that the resident had endured. One resident said about her daughter, “She remembers pain I forget I ever had.” Family members are able to help the staff understand the resident in the context of the rest of his or her life, if staff members have the time and are willing to listen.
It was disconcerting to family members to have their knowledge and insights about their loved one disregarded by the staff. One daughter noticed on a Friday afternoon that her mother was unable to move her left arm or leg and that her facial expression looked odd. She tracked down the charge nurse and told her she thought her mother was having a stroke. The charge nurse told the daughter that sometimes her mother acts that way and dismissed the comment. On Monday, when other regular staff members also noticed that the resident was not herself, the same charge nurse who dismissed the daughter’s comments on Friday sent the resident to the hospital where it was determined that she did, in fact, have a stroke. By then it was too late for medication to be effective in reversing the stroke. The daughter was angry as she told the story to the researcher, stating, “That’s the only thing that really pisses me off about this place is you know every time I tell them something, they try and tell me I am wrong.”
Sometimes the staff and the family member agreed a resident’s behavior was problematic but disagreed on the underlying cause and, therefore, on the solution. Although the staff members were the experts on the effects of the current behavior, the family members were often the experts on putting the behavior into context. For example, the daughter of one resident conceded that her mother was treating the staff poorly by yelling at them, refusing to accept medication from them, and demanding they leave her room. The charge nurse classified the resident as a “behavior problem,” but the daughter considered that some of the behavior may be due to early dementia and the fact that her mother’s eyeglasses had been lost in the nursing home months before. The resident could not see who was in her room. The daughter also reported that her mother had poor hearing and was startled easily when she noticed staff in her room. The daughter attended a care plan meeting and made her case to the staff. A member of the nursing staff suggested the daughter find another placement for her mother. A social services staff member followed up on the daughter’s view of the situation and asked the resident how she would like to be treated by the staff. The social worker shared the resident’s preferences with the nurse aides who were caring for this resident and charted this note in the medical record:
Spoke with [the resident] regarding dislikes in [nursing home] placement and thoughts about death. 1) Don’t call her “honey, sweetie, etc.” Address her by her first name or Mrs. __. 2) Be careful with approach and explanation…. Show concern; don’t just say “wait a minute.” 3) [Resident] is frustrated by a particular nurse. 4) [Resident] is bothered when staff persist. 5) This writer observed that [resident] gets angry if staff “tell” her what they are going to do and then quickly do so without giving her time to process what they have said. [Resident] is unhappy but does not know where she would rather be. Says she wants to die, “I wasn’t playing, I mean it.” She says she wants to get better or to die. Says she likes cookies. [Resident] doesn’t hear well. Wears glasses. She lost her glasses since admitted to facility. Falls are a great concern.
The issue of when and how much to speak up about care concerns was mentioned as family members discussed their responsibilities toward their loved ones. Some family members learned to think twice before speaking up on behalf of the resident. A daughter reported that although she felt comfortable tracking down the charge nurse, the administrator, or the social worker to point out some of her mother’s un-met needs, she believed she had to be careful what she complained about and not to complain too much. She explained:
You really got to watch what you say. You are not free to really speak your mind…. I think to myself, should I go over there and raise Cain? If I do, will they take it out on mom when I leave? Then they will really ignore her.
One family member said she stopped attending quarterly care meetings with the staff because she did not feel her comments were welcomed at the meetings. An upper-level staff member told this adult daughter that if she did not like the nursing home, she was welcome to move her parent to another facility. That bothered and frightened the family member, and she stopped bringing unmet resident care needs to the staff’s attention.
Keepers of Family Connections
Most family members in this study remained committed to being part of their loved one’s daily life out of a sense of love or duty. This commitment represents the third theme. This desire to remain connected was grounded in a combination of the family members’ expectations of themselves, of their capabilities (e.g., time, health, transportation), and the nature of their relationship with their loved one through the years. The field notes included many concrete examples of family members demonstrating their connection, including visiting, telephoning, sending flowers, giving gifts, bringing special food, providing supplies (e.g., makeup, clothing), decorating the room with the resident’s personal possessions, attending meetings about the resident’s care, meeting loved ones at the emergency room, coming to eat with the resident, and taking the resident out of the nursing home on occasion.
Many of the family members who were a generation behind the resident explained that their loving concern was a way to return the care the resident had provided to them earlier in life. One stepdaughter who visited her stepmother daily and often brought home-cooked meals commented, “She did for us when we were young, this is her payback.” A nephew said of his uncle (a resident) and his aunt (who had died recently), “They cared for me when I needed it. I should return the values.”
Another nephew mentioned that his 92-year-old aunt on his father’s side had married as a young woman. Her husband had died when she was in her late 20s. She then lived by herself until age 90. The nephew said his dad kept an eye out for her and would bring her groceries occasionally or fix things around her house. The nephew mentioned that his aunt had helped to raise him and that she was a very important part of his growing up. When the nephew’s father died 15 years ago, the nephew took his aunt aside at the funeral and said, “Auntie, now that Daddy’s gone, I’ll take care of you.” He remained an important part of her life in the nursing home.
Family members remained involved in the lives of the nursing home residents out of a sense of love or, sometimes, a sense of obligation or duty. In one case, the resident had abandoned the family when the daughter was 14 years old. With her father in his old age and her mother dead, the daughter was the responsible party and the family member most involved in his care. She remained involved not because of who he was but because of who she was.