Teresa Jade LeYung's BLOG

August 7, 2018

Dear Readers,

I (Teresa Jade LeYung) write to you not as a novelist, theme consultant or found-object artist but as a memoirist, daughter of Mr. Leung, and a witness to joy and despair and a whole lot of kindness.

Papa was doing fine, as fine as a 84-year-old fellow with Parkinson’s Disease (and Diabetes and hypertension) could do. Just four months ago, he was using his walker several times a day … to go from his apartment to the balcony on his floor and to the courtyard in the senior building he lived in.  To show off in the hallway, whenever a caregiver was nearby (and I have photos to prove this), he would abandon the walker and use the handrail to traverse the seventeen feet to the door of his apartment.

On July 19, around 5:00pm while I was away on a writing retreat with two dear friends/colleagues, my sister (who was here for the summer) called me to say that paramedics were taking our father to an E.R.

A few days prior to this one, his caregivers had been reporting (in Cantonese) that our papa  was “looking sad”.  That morning of July 19, caregiver Mrs. G. had reported to my sister that Papa was feeling dizzy.  When my sister called me, my advice to her was to ask questions: “Had Papa eaten breakfast?  Had he been drinking water everyday? What was he doing before feeling dizzy?” He would be seeing his primary care physician that afternoon at 4:00pm … Well, our papa was in no condition to go to the appointment.  His primary care physician instructed my sister to call 9-1-1.

In E.R. and the hospital, our papa was being treated for pneumonia and urinary tract infection.

Pneumonia. When two friends heard the word “pneumonia” they gently prepared me for the worst case scenario. Well, Papa has beat the odds before.

He had aspiration pneumonia (probably caused by food or water going down the windpipe which led to bacteria infection).

And, he was fighting a urinary tract infection.

July 22 (the day that my sister flies home), Papa is transferred to a skilled nursing facility.  He had bounced back before, twice last year – dehydration and falls.  This time is different.

My papa is not Mr. John Pepper (the hero in Chapter 2 “The Man Who Walks Off His Parkinsonian Symptoms” in the book The Brain’s Way of Healing by Norman Doidge, M.D.).  Papa is his own hero, winning smile, flaws and all.

Papa Makes Decision “Where Do I Go Now?”  After Hospitalization.  While In Skilled Nursing Rehabilitation.

August 7, I asked the Director of Social Services at the skilled nursing facility where Papa was at…

“Could we please have a meeting, with a Cantonese-speaking interpreter, so that my father can hear in his native language…what his choices are when he is discharged? I want him to make his own decision. He’s been asking me to help him go home. He needs to understand what is happening.”

Miracles involving my father also involves the ticking of a clock.

The meeting would take place that afternoon. I asked dear friend Sasa to go with me (I needed someone to witness my role).  The meeting would take place after Papa has his lunch and before my friend would need to leave at 2pm.

Staff members at this institution are pulled in various directions during a work day. The Director of Social Services was most accommodating.  Sasa and I arrived at 12:30, patients were waiting for lunch which was served later than usual today.  1:00pm  Papa’s puree and “controlled carbs” meal arrived (looks delicious, really).

At 1:40pm all the characters for the scene were in place – Papa; director of social services; interpreter who is also activities director; my friend Sasa; Papa’s caregiver Mrs. G who was visiting; and me.

What are the 3 options when skilled nursing facility discharges Papa?

• Go home? He was receiving 5 hours/day of care through IHSS. He now needs 24-hour care.  Who will pay for the 19 hours each day? His monthly income from Social Security is approximately $1,000; $300 of that goes to paying rent of a studio apartment in a senior housing; the balance pays for food, hygiene products, telephone, TV, SF Paratransit. My sister and I can contribute up to $700/month. Care-giving costs $35-$40/hour; most agencies want a 4-hour minimum each day; our $700/month would buy approximately 18 hours.
• **

• Go to an assisted living home or a board-and-care home (fewer residents in these types of homes) – in San Francisco Bay Area, minimum cost is over $3,000/month. According to https://www.senioradvisor.com/san-francisco-ca/how-much-does-san-francisco-assisted-living-cost  on average, a senior can expect to pay approximately $54,000 per year on these services.
• **

• Accept a Medi-Cal bed in a nursing home for long-term care. (If Papa were to private pay, the cost of nursing home care would be more than $300/day.)  Because he has Medi-Cal (thank God), he would authorize Social Security to transfer his monthly income to the nursing home. http://www.canhr.org/factsheets/medi-cal_fs/html/fs_medcal_overview.htm Medi-Cal is a combined federal and California State program designed to help pay for medical care for public assistance recipients and other low-income persons. There are 3 of these beds (vacancies) in the facility right now, on the nursing home floors.
• **

**

The Michael J. Fox Foundation  www.michaeljfox.org

https://www.michaeljfox.org/foundation/news-detail.php?swallowing-and-parkinson-disease  In addition to the classic motor symptoms of Parkinson’s (tremor, slowness, stiffness, walking and/or balance problems), a person may develop changes in speech and/or swallowing.  Speech and swallowing therapy exercises, combined with Parkinson’s medication adjustment and, if necessary, dietary and/or behavioral modifications are the mainstays of management.

… to improve swallowing and lessen the risk of aspirating. These could include dietary modifications — such as thickening liquids — and/or behavioral strategies, such as avoiding drinking through straws, tucking the chin to the chest when swallowing or taking smaller bites at slower intervals.

To hear a webinar presented by Michael J. Fox Foundation on urinary problems and Parkinson’s… click here or look up any webinar by visiting at www.michaeljfox.org/webinars.

http://canhr.org

**

http://canhr.org/factsheets/rcfe_fs/html/rcfe_evalchecklist_fs.htm

Since 1983, California Advocates for Nursing Home Reform (CANHR), a statewide nonprofit 501(c)(3) advocacy organization, has been dedicated to improving the choices, care and quality of life for California’s long term care consumers. Through direct advocacy, community education, legislation and litigation it has been CANHR’s goal to educate and support long term care consumers and advocates regarding the rights and remedies under the law, and to create a united voice for long term care reform and humane alternatives to institutionalization.

**

Sincerely,

Teresa Jade LeYung

http://lovemadeofheart.com/blog/papa-wins-parkinsons-disease-loses-papa-wins/