photo by Elley Chu

As writing coach and theme consultant Teresa Jade LeYung, I ask my clients: “What does your main character want?”

Sometimes, the client’s response is: “I’m  not sure.”  Other times, the reply is: “Nothing.”

If the protagonist in a story wants nothing, then, what is the story?

There is always something!  Could it be that your Hero cannot accept what is happening to her/him?  Does he/she want life the way it was, not the way it is?

That is my father’s dilemma. He has lost control over his day-to-day activities. Ever since the hospitalization for Aspiration Pneumonia and urinary tract infection in July 2018. Ever since he could no longer live by himself.

No more going to the hallway or balcony with his walker to exercise or taking the elevator to go to the mailroom whenever he wants to. No more watching his Cantonese television programs with his girlfriend who lives in the building. No more telling his caregiver to stop by the grocery store and bring him a particular fruit or a Chinese pastry he is craving.  No more quarterly appointments with his UCSF neurologist or UCSF hi-tech physical therapy for movement-disorder.  What irony – the appointments he had labeled “unnecessary” and “there’s nothing wrong with me” are now out of reach and “Why can’t I go?”

When nursing home staff members ask him “Do you want anything? Do you need anything?” he raises his left hand to gesture “No” and smiles.

When I am with him, occasionally he will tell me in Cantonese: “I don’t want to stay here.” (I think to myself Oh, Papa, of course. You were independent, in spite of Parkinson’s Disease, in your studio apartment.  Aspiration Pneumonia and urinary tract infection created your decline and now you are in a nursing home, in a room with 2 other residents, no furniture of your own. I am sad for you. But, I know that you are safe and well cared for by dedicated staff.  You are a lucky guy.)

I do not lie to him. I say: “This is your home now. Nurses and CNAs take excellent care of you. You are safe here. You have friends here. If you exercise and get strong to the point that you can live on your own again, then, I will help you find another one.”  I reinforce my words by taking out a green exercise band from the top drawer of the nightstand.

I had bought the green band when I was getting physical therapy for my plantar fasciitis. Last month, I found the band, and used a thick permanent marker to write my father’s name on it.  [ If you don't put your name, room and bed number on an item, that item is likely to disappear.  Even if everything were labeled, staff and residents would still experience "missing items."]

Papa is in good hands with the nursing home staff. And, since November, he’s been receiving visits from a nurse, a chaplain and a social worker from Hospice By The Bay.  Also, he gets visits from former caregivers (with help from my sister, I can afford to pay them to visit), his daughter-in-law, his grandson, his girlfriend, a few other people, and me (his representative and advocate).

Who else feels loss of control?  Me.  When I see Papa not practicing safe eating behavior.

What is safe?

- Papa sits upright and is fully awake (should not be putting food or drink into his mouth if he is slouching or sleepy).

- Eat slowly.  He uses a teaspoon to put food or thickened liquid into mouth.  Chew.  Swallow. Swallow again.  Say “AAH” twice.  If you don’t hear a clear AAH, that means food/drink has not cleared past the throat.

-  Do NOT tilt head backward when swallowing (head-tilting increases risk of choking and aspiration)

Oh, how I get exasperated when I find out that someone gave him food that hasn’t been pureed by dietician or liquid that hasn’t been properly thickened by his nurse.  Last month, two other residents gave him something to chew (Chinese chew); the nurses explained to the two nice people that my father cannot just chew, that he has a swallowing problem, that he could accidentally swallow the food. The residents don’t understand that another episode of aspiration-pneumonia could be fatal. They can’t empathize.

That’s another question I ask my writing-clients – “Which characters are sympathized and which ones are empathized by your narrator?

I am indeed grateful that my father likes the staff at the nursing home, and the meals served to him, and that he gets to walk with his walker about 5 times a week with the CNAs who are especially trained.  I am indeed grateful to everyone in his life and mine.

HAPPY LUNAR NEW YEAR 2019!

I wish everyone safety, abundant joy, and excellent health.

Sincerely,

Teresa Jade LeYung

 Teresa Jade LeYung – founder of Love Made of Heart (aka Teresa LeYung-Ryan) says: “When I’m in Paris, I know I have come home.”  Teresa speaks openly through her writing and advocacy, her immigrant experience, and her knowing beauty.  As author, publisher, theme consultant, and a found-object artist, she empowers women to transform dreams into lifestyle. http://lovemadeofheart.com/blog