I used to believe families who didn't visit their institutionalized relative were uncaring; and I judged them harshly. I knew nothing about them or their lives, yet I judged. So many elders are lonely; and volunteers and staff try their best to help. But watching an older adult sit for hours at the door or window, waiting for someone who isn't coming, is heart-breaking; it always made me angry. Obviously, as a new admissions co-ordinator, I had a lot to learn about families.
After taking the time to get to know family members, it was clear my judgement was unfair, and in most cases, unfounded. Family members who purposely avoid the nursing home are rare. They are faced with many challenges: dealing with their own health issues, trying to raise children or earn a living, or having to travel great distances. Elder care facilities are a necessity for those who can't check in on a regular basis, let alone take care of their loved one at home. At best, a daughter or son may only have time to visit once a week. Sure, there is the occasional avoidance of an uncomfortable situation when a family member says, "I don't want to go in there any more than I have to; it's too depressing." But most families do their best; they agonize just as I did when my mother was a resident; and they visit when they can.
On the other end of the spectrum are family members who regularly enter the long term care facility to check on a relative. A 70-something daughter good-naturedly told me, "While my friends are taking cruises all over the world, I'm cruising to and from the nursing home." Another daughter came twice a day, every day, to feed her 90-year-old mother. She knew the older woman needed loving, relaxed attention during hectic meal times; in general, however, she was not convinced her mother was getting the best care possible. There always seemed to be a shortage of staff, which meant some residents had to wait for help; and she wasn't going to chance it.
These two women and my father, who was at my mother's side most of the day, every day, are the ones who have something to contribute to institutional culture. They are part of the connective tissue holding the system together. A wise head nurse once said to me, "We send our children to school, but do not presume the teachers will take over total responsibility for their rearing. The same is true for nursing home care. Families can't expect a nursing home to meet al the needs of a resident. It isn't that they don't want to; it's just one of those facts of life. Staff have to focus on a resident's physical health needs first."
The trouble with encouraging family involvement is that family members can be time-consuming and an emotional drain on staff. Some relatives are tenacious in their quest for answers and solutions. If they get nowhere with line staff, they head for the director of nurses or administrator. Starting out on the defensive, the relatives gird themselves for condescension and excuses. From the get-go, there is fear and distrust. There are others who prefer to complain to a staff person with whom they have bonded, but who then has to take the message to a supervisor, who has to take it to the next level -- all of which takes a lot of time, reassurance (sometimes, false reassurance), and tact.
As long as they are appropriate and non-threatening, family members are entitled to intervene on behalf of a relative who may be frightened of retaliation or too weak to advocate for herself. Sometimes, however, staff do not view angry family members as appropriate; and they don't always know how to work with them. Tragically, nursing homes have been known to bar an aggressive family member from their premises. If a resident cannot see her closest relative, what is the effect on the resident's overall health and well-being?
Open and honest relationships, along with quick attention to problems, are two major ways to avoid misunderstanding or confrontation in a long term care facility. There were a couple cases where, had it not been for my good relationship with the head nurse on Mother's floor, I would have called the state omudsman to report neglect. My concern about a call bell that hadn't been fixed for at least two weeks should have been a priority. Instead, I had to mention it several times, while trying to calm my parents each day we waited and were told it was being worked on. This highly respected nursing facility finally provided us with a door bell that sat on her night stand. The bell did not ring through to the nurses' station; but we were told they would hear it if they were in her hallway. If they were in her hallway? On many occasions, and for stretches of time, her hallway was empty.
This episode did not make any of us comfortable, given my mother's increasingly deteriorating health needs. She was discharged before the call bell was repaired. Any trust I had was gone; and when it came time for her to return the last week of her life, even with a Hospice nurse coming in now and then, I was more watchful and present for her than ever.
Families don't just sit around and think up things to complain about. They complain for good reason, and it is incumbent upon the rest of us to listen carefully and act on those complaints immediately. It takes a concerted effort on everyone's part to tame emotions and solve problems. For the family member who has stepped over the line, who has no time to participate in a parent's care, or who is coordinating care from three thousand miles away, there should be a family advocate.
(c) Sally Z McBain