Sunday, March 31, 2019
For those who read this Blog regularly, thank you. Especially as I have been leaving the bulk of recent postings to my wonderful blogging colleague and all-round elder law guru, Rebecca Morgan. Thank you most of all, Becky!
It is early morning on a Sunday as I type this. The Arizona sun is not quite above the eastern horizon. A calm morning after several days ... okay, I confess, weeks ... of small troubles. I had time to read The New York Times, and there it is once again, an article with a title and content that seem right on point for what I am pondering:
For the last several weeks, my sister and I have been struggling to understand how best to help our mother in the latest part of her journey with dementia. Recently she fell twice in single week, when rising before dawn and struggling to get dressed by herself. She did not need to be up so early, but in a lifetime of early rising, it is hard to change. Learning new routines, such as calling for help, is never easy, but especially so when memory and awareness are impaired by dementia. Her second fall resulted in what Mom had long feared most, a fear that will resonate for many people. She fractured her hip, as well as a few annoying ribs.
This put the three of us, my sister, my mother and me, squarely in the middle of doctor consultations, hospitals, rehabilitation centers, home care agencies and a search for alternatives for care. Do you have a mental image of Queen Elizabeth in London? Perhaps you have seen photos or news footage of her in recent weeks, walking with determination and carrying her purse, as she attends to her royal duties? Well, Queen Elizabeth and our mother are the same age and seem to have very similar abilities to persevere. We think of our mother as a slightly smaller version of the Queen, perhaps walking a bit slower although with equal commitment to the task, complete with her own favorite handbag. Or she was until the recent set of events.
At age 93, Mom sailed through surgery to stabilize her fractured hip, and even did pretty well during the first phase of recovery in the hospital. One small blessing for Mom is that she has no memory of the falls, no recollection of the surgery, and no memory of pain. Thus she's surprised when it "hurts" to try to stand, much less walk. Of course, both pain and understanding of what pain signifies, are important reminders of the need to take things slow.
We've done the hospital surgery stay "thing" before with Mom, and we've learned to treat such events as a marathon, rather than a sprint. We've learned, for example, that our mother's agitation after surgery makes IVs difficult and that any form of narcotic pain medication is likely to trigger days of vivid and disturbing hallucinations. For pain, fortunately tylenol is enough with Mom. We work hard to come up with a way for someone (usually my sister, until I can fly in) to be there each night, when we know hospital staffing levels can be low and call buttons may not be answered quickly. We know that without being there, when Mom does sometimes complain of pain, we will to need to remind the staff that tylenol is usually sufficient.
We try to rotate nights. My sister is a pro, and after weeks of my somewhat frantic naps on airplanes, I've become pretty good at falling into a wakeful sleep mode in an upright position. Staying overnight in a hospital is disorienting for the healthiest person and much more so for someone like my mother who cannot understand why this "hotel" has staff members that keep waking her up at night to take her temperature and hand her medication to swallow. I will be forever grateful to the nurse who, after my mother spit a full mouthful of water and the medicine back in her face, nonetheless returned promptly to help throughout the third shift, still offering smiles and kind words. The nurses who advocate for change in The New York Times article have it right -- "safe staffing levels" are one key to sound hospital care; only with adequate staffing can nurses be expected to keep working in such taxing circumstances.
The next decision was about where to go after the hospital. One option presented by the discharge planner was to go to a skilled nursing facility, a/k/a nursing home. We had previewed a wide range of places and we already had a list of possibilities. But we were pretty confident Mom could tolerate physical therapy, and therefore, after consultation, we opted for a facility that specialized in rehabilitation.
One complication: The rehab facility's admissions director said that they were not willing to take someone with dementia unless the family made sure there was 24/7 assistance during periods of confusion and, they emphasized, to keep her from wandering. With gratitude, we accepted a brochure offered by the admissions director for a local home care agency that they had worked with before. My sister, a true angel, and I, very much a mortal, knew we couldn't do this alone.
And thus began a strange variation on the "Bell Rings; Nobody Comes" theme of The New York Times article about hospital care.
The first yellow flag was when one of the line staff, a certified nursing assistant (CNA) at the rehab facility, who heard we were hiring companions from an agency, commented, "Well, okay, if you want to do that, but just so you know, these people don't do a darn thing. They won't lift a finger to help." I didn't know what to say; I think I said something like, "Well, let us know if there is a problem."
The "problem" emerged quickly. Companions from the home care agency said the rehab staff were not responding to call buttons when help was needed for our mother. The rehab staff were complaining that the companions didn't provide any help. I talked to an administrator at the rehab center. He assured me that their policy was for staff to respond promptly to call buttons and that he would remind the staff that a family member or hired companion was doing "the right thing" by using the call buttons to seek help.
But the reports continued, even as Mom began to recover more function, and thus actually needed more help in key tasks because she was more mobile. Different companions and even friends reported that the CNAs at the rehab center would, for example, help our mother to the bathroom toilet, but then would refuse to stay until she finished. Some reported the CNA turning to the agency's companion and saying with disdain, "You should handle it from here."
I tried talking again with Rehab's administrators, this time the director of nursing. She was also quick to reassure me that we were not wrong to ask the rehab staff to assist our mother in the bathroom and to remain with her till she finished, as our mother was still unable to rise on her own and also could not or would not use the pull cord. She thought the most recent report was about one new rehab employee, who may not yet understand his or her role.
But the reports continued. One report came from a friend visiting Mom. She noticed buzzers ringing endlessly on Mom's floor, even when available staff were chatting nearby. I tried talking with the management staff again. At one point, the home care agency actually swooped in and removed a companion we hired to help our mother, after the rehab center complained to them that the companion was complaining "too loudly" about the rehab staffing and lack of coordination with staff. In response to the turmoil my sister ended up taking another night shift in rehab (after a long-day as an administrator for a charter school). I started planning another flight to Arizona.
I slowly began to realize that this was not a problem that could be "fixed" with polite requests or even more directly-worded complaints about staffing roles. I learned:
- The direct care workers at the rehab center felt seriously over-worked and under-appreciated;
- The rehab center was often short-staffed, especially when employees called off on short notice;
- The direct care workers resented the agency's companions "doing nothing" when an extra pair of hands, any hands, would have made their work easier;
- There was tension between the direct care workers, most of them CNAs, and the cehab Center's other "higher" staff, including nurses and shift supervisors;
- Family members of other patients were also concerned and confused about what to do about unevenness of care. They weren't required to have a companion as their loved one did not have the dreaded "dementia." But their need for prompt assistance for loved ones recovering from car accidents, strokes, or major surgery was just as great.
A family member of another patient in rehab commented to me, "This is a broken system." At first I thought she meant the Rehab Center. But she clarified. "This is just one part of a broken care system." She meant that all of care is a broken system.
In a moment of truthful frustration, one of the intermediate staff at the Rehab Center asked me to "compromise." Compromise about what? His suggestion was that we ask the home care agency to provide companions who would work closely with the CNAs and thus provide "necessary assistance" whenever mom needed help in transportation or toileting. At first my temptation was to resist, as I knew Medicare was covering rehabilitation costs, while we were paying out-of-pocket for the home care agency's employees, who as companions were not "certified" for certain assistance. But I have realized that the only real hope of a solution was if everyone pitched in and did whatever was necessary to help Mom get from point A to point B, and to get on with her therapy.
The good news for my tiny family is that everyone became pretty darned motivated to get mom successfully through therapy with a core goal: getting her back safely on her feet. Our mother has once again proved to be an Olympian in recovery. She's walking again and, amazingly, seems more accepting of help at key moments. She will continue with PT and OT in the assisted living facility where she has been doing well for over a year. It was a relief for my sister and I when our mother seemed relieved to be "at home" again there.
I'm too close to this, and also probably too jet lagged, to see true solutions. What should happen when call bells ring in a hospital, rehabilitation center, or any form of care? Can the problem be solved with laws or regulations mandating staff ratios? I'm not sure. I know I became frustrated whenever one of the rehab center employees would tell me the law did or did not allow them or us to do something. I'm quite sure they were equally frustrated with my responses also quoted the law. Laws are about limits, not best practices.
I do know that we need some way to allow everyone who cares about their loved ones, including the nurses, CNAs, and family members, become part of the solution. Without practical solutions, we are left with broken systems.