“this ballet is not for dancing”

The Video Camera on the wall of Swan Lake Manor is recording. All the film sees is a lone person, Lydia, sitting in a wheelchair in the long corridor. Her shoulders are hunched and her head is covered with a brightly colored scarf.

This camera is meant to see all. And, this early Saturday morning, it did.

The clock on the wall says 7: 31 AM. Screams are heard echoing down the long hall way of Swan Lake Manor,

“Help me, help me!” screams Lydia as she inches her wheelchair painfully, slowly forward.

No response. The camera does not pick up anyone or anything joining the drama.

“Nurse, nurse, nurse!” the screams are becoming shrieks now.

Still – no response. However, at approximately 7:37, a caregiver is seen dashing across the hallway; pausing to contemplate the screams of help, and then marching on.

Soon, Walter, a resident in a wheelchair waltzes around the corner,

“What’s all the screaming about?” says Walter, moving his wheelchair closer by to Lydia.

“Help, help, help!” continues Lydia, as she pushes her wheelchair along, ignoring Walter.

“Oh shut-up!” Walter shouts, extending his right foot and giving Lydia’s wheelchair a good, sound kick. A dead eyed stare shoots back from Lydia.

It is now 7:49, and there is no one in sight.

By 7:51, Walter has had enough. He dances his wheelchair over to the nursing unit of Swan Lake Manor, and says to the nurse,

“Can’t you hear Lydia making all that racket down the hall. Why don’t you do something about it? It’s driving us all crazy.”

The nurse is consumed with her work at the nurse’s station, barely glancing up. She calmly replies, “Oh, that’s just Lydia telling us she wants us to push her wheelchair to the dining room for breakfast. She’s always like that Walter, don’t worry.”

The appealing shouts are still heard down the long, empty corridor,

“Help, help, help me!” shouts Lydia. The clock goes on ticking at Swan Lake Manor; it is now 8:06 and breakfast will be served at 9 AM.

Interview

The interview with Lydia’s nurse follows:

What message do you think Lydia is trying to deliver? And why do you think she repeats herself so much?

I guess she might be telling us she is hungry. Or maybe she is lonely and wants the girls to give her some attention. It’s just that everyone is so busy early in the morning getting everyone ready for breakfast, that nobody has time to spend with Lydia.

I don’t think Lydia remembers when we tell her that breakfast is coming, or that we will help her when we can. She just keeps screaming.

Why do you suppose this is?

I imagine this is because of Lydia’s mental deterioration. She really is doing the best she can. I’m thinking maybe Lydia can’t understand what’s going on and she is afraid.

Does she know where she is living? And does she know when & where breakfast is being served?

Some days, Lydia thinks she is still living in Russia. It seems no matter how many times the girls tell her she is now living at Swan Lake Manor, she won’t remember. The same thing happens with meal times. Even after Lydia has finished her breakfast, she will ask the girls, “Is it breakfast time yet?”

This must be very frustrating for you and your staff.

Absolutely! Although it may appear that we have been ignoring Lydia this morning, we have to put up with this on a daily basis. And we do have 75 residents to prepare for their breakfast time.

Do you have some suggestions as to how caregivers can focus on Lydia’s remaining skills?

That’s a really good question. Lydia has always enjoyed cooking, gardening and classical music. Also, she loves being around small children.

What might be some ways of maintaining Lydia’s respect and dignity?

Now that you mention it, perhaps we could bring Lydia to the dining room earlier, and she could assist the girls in the kitchen. Or, maybe we could even turn on some classical music for her, while she is waiting for breakfast.

Do you see any benefits in leaving Lydia in bed a little longer in the morning?

That might just work. The girls could turn on her music by the bedside and Lydia could rest until closer to breakfast time.

Anything else you want to add?

Yes, I have noticed that Lydia communicates with feelings, more than with words. If we take the time to sit with Lydia, it helps us so much more to understand the person inside.

Gwendolyn deGeest

Author

  • Gwendolyn deGeest RN, BSN, MA is the author of "Bathing Sparky"; She has been working in dementia care for over two decades and has witnessed the joys and sorrows of families struggling to maintain a quality of life for themselves and their loved ones. Gwendolyn's thesis, "The Relation Between the Perceived Role of Family and the Behavior of the Person with Dementia" is published in the American Journal of Alzheimer's Disease, May/June, 2003. This work was presented at The International Congress of Gerontology, Vancouver, Canada. Gwendolyn resides in Vancouver, with her family where she is a professor.