One night at home in New York, unable to sleep as I am feeling particularly sad about my Mom still living in a SNF (after 90 days of supposed "rehab" has turned into five months and counting), I think about the time four months ago when I was down in Florida visiting her, and she had a recurrence of the Clostridium Difficile infection. She was so sick with the intestinal monster, that she landed in the hospital for three days from her cozy little room at the SNF. I was grateful that I happened to be there at a time when she really needed me.
     At the hospital, she was disoriented and frightened. And she really was terribly sick. By mistake, her doctor had ordered the very antibiotic to treat a urinary tract infection that had sent her into the downward spiral of the C. Diff. in the first place, some three months earlier. She took the antibiotic her doctor prescribed (Mom is from the generation where they don't question The Doctor), and the C. Diff returned with a vengeance.

Singing Away the C. Diff Blues
     I sit at her bedside in the hospital, furious with the doctor, but trying to focus on comforting Mom. And then, in the smallest, weakest voice, she begins to sing, "I could have dahnced all night, I could have dahnced all night, and still have begged for more." I chime in with her, although a singer I'm not, and there we are, in the middle of her large hospital room - since she needed to be isolated as C. Diff has a nasty way of jumping from hospital patient to hospital patient - croaking out a song about dancing all night. It sure beats the alternative of Mom thinking about just how debilitated she is from this latest round of illness. She can do nothing for herself, she is so weak. It was one of the most poignant moments of her illness and convalescence. The two of us, bound by blood and genes and the eternal struggle between all mothers and daughters, singing away the awful reality by transforming ourselves into Eliza Doolittle, home from the ball where she had successfully transcended her sorry beginnings and passed herself off as a Princess. And we had our own masquerade, Mom and I, so why couldn't Mom transcend these sorry times, and return to her life as Queen of her own apartment by the Gulf? I truly believed that maybe she would "dahnce all night," someday soon. But for the moment, I pull the lid off the orange sherbet, and spoon-feed her the watery pink stuff, so she can take her bedtime meds. She says very little, hums a bit more and then starts again, "I could have SPREAD my wings, and done a thousand things, I've never done before. . . ." I chime in with her through the rest of the lyrics we know, and then Mom begins talking about seeing my Dad, who died three years ago. I realize we have a long way to go.

By Comparison, Mom's Room Back at the SNF Looks Pretty Cozy
     That hospital incident was four months ago. When Mom was discharged from the hospital, she was genuinely glad to go back to a room she had come to know as her own, at the SNF, where she could get the care she needed in her newly weakened state. And now, more than ever, she appreciates the personal touches of the SNF, in comparison with the relatively brutal anonymity of the hospital. But she is also inconsolable, crying frequently and saying that just as she had built up her strength by working hard with her therapists at the SNF for three long months, she has to start from scratch. And she was right, but I couldn't let her know that. I couldn't even admit it to myself. My brother and family members make doomsday pronouncements of how she will never get back home. I practice my best skill - denying reality - and refuse to participate in the realistic assessments. I avoid her doctor and his somber headshaking about Mom. I secretly cheer when the social worker at the SNF complains that she is difficult. "You GO girl," I am thinking, while apologizing and sometimes even commiserating with the social worker, just to win her over to our side.

To Dream the Impossible Dream . . .
     Whatever alchemy linked Mom and me genetically, I know in my DNA that she just has to get home to her sunny, glass-doored apartment overlooking the Florida's Gulf Coast. To hell with the evidence. No way was I going to let this be her forever home. I was going to proceed from my own evidence base, for example, Mom's feistiness and refusal to blend in with the other residents, and her refusal to view herself as an old lady. She refused to eat in the congregate feeding rooms, and instead was served in her room, roomservice-style. Mom was transcending this experience on a conscious or subconscious level, doing what she needed to do to get home. And if I couldn't wave a wand and strengthen her legs and arms, I sure could transcend along with her and cheer her on. And I could visualize her back in her King Size bed with floor-to-ceiling glass doors that opened up onto a balcony overlooking the Gulf. I could visualize her falling asleep to the waves, as she and my father had always done since they moved down there some seven years ago, when my Dad was a young 87.
     Over the next few weeks, back at the SNF, Mom begins to work harder at her physical therapy than she had ever worked before. She becomes like an athlete in training. She has two physical therapy sessions a day - one in the morning, and one in the afternoon. In between, she pushes herself to eat whatever is nutritious on her roomservice tray, and naps to get ready for her next training session.
     I make a quick trip back down to see her the month after she returned to the SNF from the hospital, and find that our refusal to "face the facts" (like everyone else had done with all the requisite headshaking too) has paid off handsomely.

Be Careful What You Wish For . . . What Happens When You Get It?
      I enter the therapy room and find a beaming physical therapist, Carol, who I have always playfully called, "the drill sergeant." Bless that drill sergeant. Carol, Kathy and Helen, PTs all, have been the angels in the outfield - and in the therapy room.
     "Annie!" my Mom greets me, thrilled that I am seeing her in a setting where she was competent and praiseworthy. It means a lot to her. "Look what I can do."
     Mom marches herself over to what looks like a wooden labyrinth that stretches along the entire wall of the far side of the room. It is comprised of squares and rectangles of different shapes, some of which stretch over a ramp. Mom goes to the beginning of the obstacle course, with only a cane in hand, and proceeds to navigate it as if she were a cast member of Lord of the Dance. She finishes to the claps and cheers of Carol, Kathy and Helen. And meanwhile, residents and other therapists have been watching Mom's nimble show. We all break out in hoots and hollers, and already Carol, the tough drill sergeant, and Kathy, our adored friend, have tears streaming down their faces. "I told all those doctors," Mom pronounces proudly. "I'm doing great!"
     Carol and Kathy walk up to me, still with tears in their eyes. "I can't believe the progress she's made," says Carol. "It's miraculous. The doctor is talking about sending her home at the end of the month."
     Mom, Carol, Kathy and I stand there, taking in what Carol just said. Her words reverberate among each of us, and we fairly stagger with the news. Mom beams, proud of herself for the first time since she's been at the SNF. And then she inches closer to Kathy.
     "You guys," I say, "we owe it all to you."
     Mom chimes in, "We sure do," she says. "They worked me hard each day. They're my good friends!"
     "I told you, you don't belong here," chirps Kathy, who has always been with me in terms of seeing Mom as La Grande Dame, and clearly in the wrong place, surrounded by these older, incapacitated people. "We'll just have to get together with you outside of this place." Even though Mom at 84 has been incapacitated, somehow she just never fit in with the residents, most of whom made calculated decisions to move to the SNF - or their families and doctors had made the decision for them.
     For Mom, she always wanted to believe she was there "strictly for rehab," even in the darkest, sickest, most incapacitated hours when she was confined to a wheelchair for moving; she wasn't strong enough to use her walker. It really was touch-and-go for a long time, made more touch and less "go" by her re-hospitalization with the recurrence of C. Diff.
      And from that moment on, I bore witness to one of the stranger phenomena I've ever seen, although it now makes perfect sense to me.
      "I have a new attitude," Mom proclaims to her beloved PT's and to me. "I'm no longer going to be negative."
      This from my Mom, who from the day she was wheeled into the SNF, until this very moment, has complained bitterly and ceaselessly. At first, I ran around, making appointments with the Directors of Nursing, Foodservice, and Social Work. I visited with the top administrators. I listened to each complaint in Mom's litany: "they wake me up too early; the food is awful and I can't eat it; the CNAs are mean to me, they only let me shower twice a week; they never help me at night, and they NEVER come when I ring the button," among many, and nearly ate my heart out trying to remedy each problem.
     I should have known from my four-plus decades of experience as my mother's daughter. It isn't about the specifics. It is about not feeling beautiful any more. It is about my father having died and her never seeing him or holding him in her arms or smelling his wonderful musky scent ever again. It is about not being the most beautiful, striking woman in the room, or the center of attention at parties. And it is also about her fear of having to stay at the SNF for the rest of her life. And obviously, these are not matters I can fix or change no matter how many appointments I make with executive staff.
      All of a sudden, Mom begins talking about the SNF as if it were a vacation spa filled with her dear friends that she can't bear to leave.
      "You know, this is a wonderful place," Mom says to me.
      "Yes, Mom, I've always thought so. And we're so lucky that there was space for you to come here and get the care you needed to get strong."
      We are still in the therapy room, surrounded by Mom's proud PTs, including the drill sergeant.
      "Well," Mom says, "I think I'll start making time to go to the activities. You know there are many activities here, and theyıre wonderful! I think I'll start going to beading classes tomorrow. I've never had the time before."
      "I don't know if you'll still have time," says Carol. "The doctor is talking about sending you home at the end of the month, and we have to get you ready."
      Mom looks like a little girl who has been told she has to leave her adored summer camp and all her friends and spend the rest of the summer at home alone in her room. She looks like she's being punished.
      "Well, we'll see," she says, teetering a bit. "I think I'm tired and I want to get back into my wheelchair. I think it may take a bit longer than a month," she adds. "If I'm going to go back home, we have to make sure I'm strong enough to live all by myself. After all, I'm used to all the action around here. I may not do well at home all by myself."
      I stand there, hearing what she really is saying, hearing her say "by myself," twice in a row, and suddenly hearing her ambivalence about leaving a place to which she has worked so hard to adapt herself, albeit an institution. I immediately kick into my gerontologist mode, reminding myself to check the literature about nursing home residents and their ambivalence about being discharged back to their community-dwelling lives, especially when they are widowed. I am already planning my PubMed search. Because as a daughter, I am too overwhelmed by all the meanings, implications and irony of it all.

A Daughter's Wish List
     ·Remember that residents, just as it is so for you, may have ambivalent feelings about wanting to remain in a protected environment (the SNF) and wishing they could be back home.
     ·Residents may show tremendous progress with their rehabilitation, and then may regress, as they may have a non-conscious fear of leaving the safety of the SNF.






©Ann D. Gross