boy playing flute
Music Is Hope

Making a Difference:

The Ombudsman’s Impact on a Resident’s Life

C. Gourgey, Ph.D.

(The following story, though fictional, is based entirely on actual events. Every scene is real.)

When I first came to this home I was terrified. I felt like my family had abandoned me. I know it’s not their fault; they love me and did the best they could. But I can’t help feeling that way sometimes no, actually often.

In my former life I was a highly educated woman. I treasured nothing more than my independence. I was active mentally and physically. I loved my job as book editor and interacting with authors. I worked out at the gym, and I loved traveling with my husband. Now he is gone, and those years feel like they were lived by somebody else. It’s getting more difficult to remember who she was, that someone else.

I miss my children. My daughter lives in Florida now, and has her hands full with her own kids. My son still lives here in the city, and while he did help me with my move here, I hardly see him now. He calls me sometimes. He doesn’t say it, but I know this place depresses him. I want him to live his own life.

Time crawls here. There is precious little to do. My vision is going and I can no longer read. The “activity” they provide consists of loud blasting music in the dining room and I can’t stand to be near it. So I spend most of the time in my room, and take more naps than I should. So I don’t sleep at night. Instead I watch a sliver of light from the hallway enter my shady room, and I notice the nurses’ feet as they walk by. The nurses speak indistinctly, and sometimes in languages I don’t understand. That little shaft of light never changes; it’s the only thing that occupies my mind during those long dark hours. I go in and out of sleep, or think I do. I am never sure. The night just seems endless and I keep waiting, waiting, without knowing for what.

In the morning, the sliver of light that kept me company during those sleepless hours opens into a bright haze that overwhelms me. I keep my head down to avoid it. People pass this way and that, looking too busy to say hello, or perhaps they think I’m sleeping. The next nap will come soon enough but it won’t last long enough. The empty day still stretches ahead of me like a dark red sea with nothing on its horizon. Only the meals break up my day.

Whenever they want something, to feed me, to change me, to stick me, the aides and nurses just burst into my room. It makes me feel violated, but I’m sure they would laugh if I told them that. They’re just doing their jobs, I know. An aide who doesn’t smile puts clothes on me like she’s dressing a rag doll. These aides chatter to each other all night long about God knows what; why not even just a couple words left over for me? They sit me up in my wheelchair and park me outside the door.

Somebody wheels me into the dining room. I feel a sense of dread. Meals should be happy times, but I have difficulty swallowing, so now they only give me some puree of what I do not know whose appearance and odor make me feel like vomiting. I am a grown woman, 85 years old, and way past the age of baby food. Why won’t they listen? When I ask for something else, they tell me I can’t have it, doctor’s orders. I have no appetite anyway.

There is a container of juice in front of me. I try to drink it but it won’t go down. I spit up this orange liquid all over my nightgown. An aide tosses me a paper towel and barks at me: “Clean yourself up!” I feel a couple of tears starting to form.

Without a word I am taken back to my room and parked in the same place. I must go to the bathroom and I ask for help. The aide tells me to wait; she still has other residents to feed. I open my mouth to protest but my voice sticks in my throat. I can hold on no longer; I let go, and soil myself.

An hour later or is it two hours or three, it all feels the same somebody comes in to change me and put me to bed. She says nothing, but the grimace on her face lets me know how much she is enjoying this. Once again I feel like an infant somebody else’s mother has to care for, a trouble and an imposition. The bed rails remind me of the crib I put my babies in when they were little. I clothed and changed them too, but they felt love in my touch.

I wish it were bedtime, but it is still light outside. I don’t want to be awake, so I try to force myself to sleep. It isn’t working. No dreams come, only memories. A memory of when my kids used to come home from school and I fixed them dinner. A memory of how my excitement about her first book encouraged one of my authors who always doubted herself. A memory of how my husband never said good-night without kissing me first and telling me that he loved me. I begin to sob quietly into my pillow.

My days are all so much alike and there have been so many of them that I no longer have any idea how long I’ve been here. It is an odd feeling when one afternoon I hear someone knocking on my door.

“Mrs. Cavanaugh, may I come in?”

Nobody ever asked me that before.

“Why yes, please,” I reply.

The woman introduces herself as Olivia. She calls herself an “ombudsman” funny sounding word. Swedish, I think she said it was. When she sees the puzzled look on my face she adds “resident advocate.” While the words sound abstract, the softness in her voice tells me she is on my side. Again I feel a tear or two begin to form, and I try to hold it back.

She asks me how I am, if I have any problems. I say no problems; this is how life is here. She doesn’t leave. We talk for a while. I tell her about the daily routine.

“I can see you’re very alert,” she says. “It must be kind of boring having to sit so many hours like that with nothing to do.”

I feel like she’s the first one who even noticed, so I go ahead and talk about my life, about what I used to do. And that I can’t read easily anymore. The doctors tell me I have macular degeneration.

Olivia tells me to wait a while; she will be back. In a few minutes she returns holding an oversized piece of orange paper.

“Have you seen this?” she asks. “It’s the recreation calendar.”

I tell her I don’t pay attention to such things. I saw it on the wall but no one ever explained it to me.

“They have many different kinds of activities here,” she says. “I’ll bet we can find something you like.” She takes a moment to scan the document.

“For you I’m not going to suggest the usual bingo. And you told me you hate the loud music. There aren’t a whole lot of activities for residents as alert as you are, but here’s one. It’s a movie discussion group; it meets Tuesday afternoons. They watch a film and then they talk about it.”

Suddenly I don’t feel so sleepy. I turn my head towards Olivia.

“And if you have trouble reading print,” she continues, “there is a Library for the Blind that offers talking books.”

“But I’m not blind,” I say, feeling a twinge of fear.

“These talking books aren’t just for people who are blind. Anyone certified as having difficulty reading print can get them for free. They give you a little cassette machine and you can choose whatever books you want.”

“Well, I guess we can try it,” I say. “As long as there is no charge for it.”

“Great! I will locate the recreational therapist who covers your floor and let her know you’d be interested in the movie discussion group and the talking books. She will take care of the rest. She’ll fill out an application for you, send it to the library, and you’ll be all set.”

Olivia leaves me with something to look forward to, and promises to come back next week.

And it is a long week. I still can’t sleep at night. And I still dread mealtimes. “Eat your food,” the aides order me. Eat it? I can hardly look at it. And again, they do not change me when I am dirty. “She knows she has to wait just like everybody else” I once heard one of them say to another. When I press my red button nothing happens. When she finally comes to clean me, one of them says out loud, “This is not a rewarding job.”

It seems like forever, but once again it is Olivia’s day. “How are you doing?” she asks. “How has it been for you since the last time I saw you? Did you enjoy the discussion group?”

I say nothing. I just start to cry.

Olivia pulls her chair closer and just waits.

When I am ready, I open myself to her. “I can’t accept this,” I say. “I had a full life. I was a mother. I had a job. I helped people. Now I am reduced to this. How does anybody stand it? I used to take care of others. Now people take care of me who wish I weren’t here.”

“Please tell me what you mean,” Olivia asks. “Maybe there is something we can do.”

“If I tell you, I’m afraid they’ll take it out on me,” I confess.

Olivia reassures me, saying that while she can’t guarantee anyone else’s behavior, she will make sure swift action is taken if anyone tries to harm me. She finally convinces me by asking if I really want to continue living this way. Can it really get that much worse?

I am so not used to having someone stick up for me like this. I tell her everything: the food, the nasty comments, being left for what seems like hours in a dirty diaper like an infant being punished.

Olivia promises to address every one of these issues:

She will speak to my dietician. While I may have difficulty chewing, I may not need puree. We can find a soft diet that will work.

She will speak to the head nurse, directing her to make sure that residents are changed according to their need and not just once a shift. Those call bells are there for a reason.

She will also identify the aides with attitude problems and make sure they receive proper supervision.

“How do you know they’ll listen?” I ask her. “What will you do if they don’t?”

“There are still things we can do,” Olivia tells me. “If we can’t fix the problem here, I will take it to the Director of Nursing. And if need be, we can file a complaint with the Department of Health. They know that, so usually we don’t have to take matters that far.”

I didn’t know I had such recourse available. I thank Olivia, and she leaves.

Over the ensuing weeks I do notice things begin to soften. I don't think those aides will ever come right away, but at least they come, so I no longer feel a need to summon the electrician to fix my call bell. The food is now palatable. And I am enjoying my movie discussion group, as well as a current events group and a meditation class my recreation therapist suggested.

When I see Olivia again I ask if I can give her a hug. “Thank you,” I tell her, “for fighting for people who can’t fight for themselves.”

The tears I now see forming are in Olivia’s eyes. She smiles at me and I think to myself, I may be stuck in this chair or in this bed, but even here in a place like this, I can still give back to others.