The following blog post (number 2 of 3 in this series) was written during the latter half of September 2018 and I am just now publishing it today January 7, 2019.

In my August 7, 2018 Blog Post entitled: Papa Makes Decision “Where Do I Go Now?”  After Hospitalization. While In Skilled Nursing Rehab … I had  declared that I (Teresa Jade LeYung) was writing to you not as a novelist, theme consultant or found-object artist but as a memoirist, older daughter of Mr. Leung. Well, I was wrong.  All my note-taking, reporting and advocacy skills are fueled by all my roles, including being a story/theme consultant, writing coach, and lover of cohesive scripts.

Story Question:   Will my father lose his Medi-Cal Bed in the nursing home?

Setting of this scene:

First floor of this establishment is mainly reserved for “patients” who have been referred by physicians to receive post-acute care after hospitalization. The first floor is where you’ll find the Skilled Nursing Facility staff (short-term care covered by Medicare); first floor is also where you’ll find the Rehab staff, the friendly faces at the reception area/front desk, and the offices of Director of Nursing and the Administrator.

The second and third floors are strictly for “residents” (receiving long-term care – some are private pay, others through Medi-Cal) and other administrative offices including Social Services.

Basement floor you’ll find Business Office, Maintenance, Food Service, Laundry Service, and staff lounge.

So, what happened after August 7, 2018?

Papa had difficulty living as a “resident” in one room with 2 roommates. His space included the hospital bed, a  20-inch by 24-inch bulletin board on the wall, an aisle wide enough for wheelchair, a nightstand  (for grooming and bathing paraphernalia), and a closet the size of a school locker.

On September  7, 2018, Nurse D. had called me that morning, telling me that my father had a fever of 105 degrees, that staff brought it down to 101.5, that they were sending him back to UCSF Hospital.

UCSF ER team reported to me that my father had another urinary tract infection – that explained the fever.  And, they saw a pressure ulcer in my father’s inner thigh, near the groin.  But why couldn’t he raise his right arm?  The team had a difficult time communicating with him because …  1) Parkinson’s Disease had impaired his speech  2) English is not his primary language  3) Later, they would find out that he had a stroke in the Pons part of his brain.

One long week in the 5-star Adult Acute Care Unit at UCSF.  Already burdened with Parkinson’s (swallowing difficulty) and now with a new stroke, my father was getting his medicine and nutrients through a tube that was inserted into his right nostril and lowered into his stomach.

A nurse checked on him every hour (including the hours between midnight and seven in the morning); every two hours the nurse and a PCA (patient care assistant) would “reposition” him so that he would not develop more pressure ulcers and bed sores.

I slept on the bed (big chair pulls out into a single-sized mattress) on two occasions.

* the first night after he was admitted, and

* the night he looked at me with moist eyes and whispered in Cantonese: “Don’t leave me.”

The attending physician (who was young, wise and gentle) called a family meeting.  In Papa’s room were my father, the doctor, a Cantonese-speaking interpreter, my husband and me.  The doctor reiterated what Papa was being treated for. Then the doctor said: “Mr. Leung. There is another matter. Do you want me to tell you?” Mr. father nodded yes.

“In the CT-Scan for the urinary tract infection, we saw masses in your kidney. In order to know if it is cancer, we would need to operate.  Based on your age, your current health . . . ” Papa had already closed his eyes (he does that whenever he doesn’t want to hear what is being said).  The doctor asked: “What do you want, Mr. Leung?” Papa did respond in slurred speech, repeatedly: “I do not want to return to the hospital ever again.”

Then the doctor explained to him that the tube could not be a permanent solution, that it would be used for an additional 4 weeks only (to deliver medicine), and, that he would be given food (pureed) by someone hand-feeding him.  The day before discharge, nurse-on-duty taught me how to safely feed someone who has Dysphagia.

Two major concerns -  Aspiration Pneumonia Risk and Fall Risk

1.  Dysphagia is a swallowing disorder.  Dysphagia can lead to malnutrition, aspiration, and pneumonia. For swallowing-safety . . .

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

- Eat slowly.  Use 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.

2. Because he is a fall-risk patient and prone to get pressure ulcers, transferring from bed to chair and vice versa requires the presence of two PCAs (Patient Care Assistants); so does repositioning him in bed.

September 13, 2018 when UCSF doctor informed me that they would discharge Papa the following day (Sept 14) , I requested that they discharge him on September 15.  I pointed out: “My father had not eaten any food by mouth.  You tell me that tonight is when a nurse will hand-feed him. Please let him have at least one full day experiencing being fed by another person.”

Here we go again!  Facts: Skilled Nursing IS post-acute care (short-term care) and IS covered by Medicare.  After Skilled Nursing discharges Papa, he would be returned to long-term care; long-term care is NOT covered  by Medicare.

Medi-Cal can hold a bed for a resident up to 7 days only. What should I do?

I talked to the case manager at the hospital; I talked to the director of social services at the facilities where Papa came from right before they sent him to the hospital; I talked to friends who had resources for me.

Then I asked myself this question:

What does Papa need right now?  Not next week, not next month . . . what does he need today and the next few weeks?

Answer:  Papa needs transition – a bed where he would receive get post-acute care – where he would receive rehabilitation.  Give up his long-term bed for now?  YES! 

If Papa is sent back to the third floor (where he was as a “resident”), even though, according to hospital discharge papers, he is supposed to receive post-acute care, how would that be possible at the facility where post-acute care is on the first floor? How would they be able to send 3 shifts of nurse and .CNA to the third floor for just one patient (my father)?

September 16, 2018 Where is Papa now? 

On the first floor of the nursing home – the Skilled Nursing Facility floor, receiving excellent care from saintly nurses and angelic CNAs and wondrous rehabilitation from the super team of physical therapists, occupational atherapists, and speech/swallowing therapist as well as Activities team. The folks who are in all the other departments also make this facility remarkable. After Papa completes rehab, he will be bounced back to resident-status.

And, I give thanks to the building, standing 3-story tall (4 stories when counting the basement level). Oh, if this building could talk! How many patients, residents, and employees has she housed over the decades?

I will publish blog post #3 of 3 of this series soon.

I wish everyone safety, excellent health and abundant joy.

Sincerely,

Teresa Jade LeYung

Teresa Jade LeYung – founder of Love Made of Heart (aka Teresa LeYung-Ryan) speaks openly through her writing and advocacy, her immigrant experience, and her knowing beauty.  As an author, a story consultant, and a found-object artist, she empowers women to transform their own stories and is often quoted as saying: “You think beauty,  You are beauty.”

 

 

 

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2 Responses to “Blog Post 2 of 3 “My Papa Makes Decision While In Hospital, Again””

  • Chandra Garsson says:

    Oh what a harrowing yet hopeful story in so many ways, Teresa Jade LeYung Ryan! It gives hope, it holds hope for your Papa, for you, for so many others. So many helpful people caring, even though the system leaves much to be desired. You are a true hero, Teresa !! Keep your chin up!

  • admin says:

    Dear Ms. Chandra Garsson,
    Thank you so much for reading. I know that you have been a loving caregiver and advocate yourself! Yes, the system is a maze and your loved one’s health is unpredictable, however, heroes appear at every turn, and sometimes, in unusual circumstances. Again, thank you for being a motivator!
    Sincerely,
    Teresa Jade LeYung

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