Partners

November 26, 2007

Partners

Sarah left this morning, taking the early flight back to DC. It’s been delightful, having her here—we are good friends, better than I could have ever been with my mother, and we share many personal confidences. I don’t mind asking her to do my laundry, or scrounge through my underwear drawer, or pick up some toothpaste. I don’t ask for help easily, even when I know people want to be of assistance. I’m not sure if my reluctance is driven by privacy, independence, or false pride, but whatever it is, being in a nursing facility exacerbates the problem. When I first came here, I was really helpless: someone had to lift my legs up for me to get in and out of bed, and I needed help getting to and from the bathroom. I would lie for a long time needing pee, reluctant to ring the call button. Mercifully, I’ve learned to become pretty independent, and even last night when I spilled a full cup of ice water into my bed at 2 AM (don’t ask) I managed to take care of the ugly mess and get back to sleep.

It’s a delicate balance between the need to be independent and to know when (and how) to ask for help. I don’t do it gracefully sometimes—well, frequently. For instance, tonight I wanted to leave the dining hall before everyone else. Since I am in a wheelchair, it’s not always easy to wend my way across the crowded room filled with people and littered with their various walking devices. I thought I saw a clear path, though—doable if I just backed my chair through the space and out the door. Well, let me tell you, backing up is not a competency of mine, either in a car or a wheelchair. So first I backed into Jean, causing her to dump some cranberry juice into her beef stew. Then I caught the leg gizmo of my chair on the walker of some other patient. Finally, with an exasperated sigh, the cook came out from behind the steam table and pulled me back through the narrow opening. Once in the hallway, I was fine…I can do a straight path forward down a doublewide hallway. But needless to say, I am sure everyone was glad to see me go, in all my graceful glory.

Now I can ask Sarah for help when I don’t seem to be able to ask anyone else. It’s probably easier because I’ve had so many years of practice—she’s helped me through a couple of cancers and a major health collapse, and we lived together for more than 25 years. Sarah is ‘family’, as is my son and his wife, in the truest sense of the word—and that in no way diminishes the importance of my friends who support me and whom I dearly love. But what’s interesting to me here is the role that the patient’s family plays in the nursing home dynamic. I always had mental pictures residents of a nursing home as abandoned, lonely, drugged and lethargic, waiting out the days.

What I find here, in many cases, is a real partnership between the patient, the facility and the family. At least two residents have family members who join us at every meal. EVERY meal! It’s not unusual to find a daughter helping her mother through physical therapy, or a husband learning how to help his spouse do rehabilitation work after a stroke. I greet these familiar faces just as I do my fellow patients, because they are in fact important partners in our community here. But I am also learning that for all of the instances where family does play a crucial daily role in strengthening the patient, families can also greatly contribute to the stress and anxiety of the nursing home resident. My friend Mary C. is in her mid-eighties, and lonely for her home. She is very focused on getting back there: it’s an obsession with her. In therapy she always does more than asked, 30 reps for every 20, and sissy squats that would put the ladies at Fit for You to shame. She wants nothing more than to have everyone say, “Mary C., you are OK!!! Get outta here!”

At the heart of the problem, Mary C.’s and others, is the family. Family dysfunctions (and everyone has ‘em) don’t disappear when there’s a difficult group decision to be made about a senior family member. In fact, one study which I read tonight said that over 30% of the time when a family expresses anger and hostility toward a nursing home (“Mama isn’t getting enough therapy.” “You are neglecting Papa.”), the real issue is family dysfunction which manifests itself in blaming of the caregivers. I haven’t seen much of that here, and I think it’s probably because there is so much inclusion of family in the nursing home setting. I’d guess there’s a counseling service for families, as well: I know there’s a social worker on staff here who asks some pretty thoughtful and probing questions of patient and family alike upon admission. But in one case I know of here, there’s a son and a daughter arguing over their mother’s future. They can’t agree, and as a result the resident has real anxiety and depression—there’s no real guidelines for what the next steps are and, it seems, no real advocate for the confused parent.

In my own family there was ambivalence about my coming here: my children thought they should be caring for me, and that there was some sort of weakness in engaging someone else to do the job. I think we are all comfortable with it now: this is a good place for me to recover. And through the decision-making process we have all been learners in how to communicate with each other and—hopefully—how to reach consensus when the time is right. In some families reaching consensus is not a common skill; these families are battlegrounds and adversarial relationships are the order of the day. As a result it is the parent who is the victim as she sits and wonders when, if ever, she can go home again.