Posts Tagged ‘Michael J. Fox Foundation’

August 7, 2018

Dear Readers,

I (Teresa Jade LeYung) write to you not as a novelist, theme consultant or found-object artist ut 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.
  • **
  • 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.
  • **
I watched my papa’s face evaluating the 3 options.  I heard him answer in Cantonese “I want long-term care here.”
My blog post 2 of 3 shall be about what happened that afternoon, what life looks like on the nursing home floor, what to do before the 90-day evaluation.

**

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’sclick 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/

Dear Writers/Caregivers/Advocates for Loved Ones,

Coach Teresa LeYung-Ryan here . . .  I see how helping a loved one/being an advocate is so much like writing a book.

My papa has been diagnosed with Parkinsonism by his neurologist. If Papa is telling his story, he would be the first-person narrator; if I’m telling the story about him, then I would be the third-person narrator.

A book (story) consists of one main character (also known as “hero” or “protagonist”) or multiple main characters and other characters (other archetypes), a subject matter that is discussed repeatedly (“theme”) and at least one plotline (“what happened?”). The merging of these elements helps the writer show the hero’s journey.

Helping a loved one/being an advocate consists of at least 2 protagonists (YOU and the loved one) and other archetypes (physicians, healthcare and social service providers, other family members and friends, neighbors, coworkers, vendors, . . . the stranger who gives up her/his seat on the train for you), themes (the cause for help and advocacy and the related issues), and plotlines (the interconnected events associated with all the characters).  Who will be the most transformed in the story?  The loved one?  You the caregiver/advocate? The person who is most transformed would be the main character/hero/protagonist.  Perhaps both people will go through great transformation.  Two protagonists!

I am writing – I keep a notebook for whenever I visit my papa or when I do something on his behalf- gosh, there are so many little “subplots” to keep track of! (Is this Papa’s third or last session with the physical therapist? Mary and I need to witness the exercises so that when the P.T. closes the case, we would be able to coach Papa. Did he say he wanted another heating pad? Oh my, there are at least 18 model to choose from.   Gotta review friends’ advice about what is a comfortable bed and also Consumer Reports. Then Papa has to “test drive” some beds. You just can’t shop for a mattress the way you shop for a pair of shoes.

MATTRESS SHOPPING TIPS (from Sealy’s website)

  1. Plan to spend at least one hour in the store.
  2. Wear loose clothing and easily removable shoes.
  3. Test out mattresses in groups of three for easier comparison.
  4. Lie on each mattress for 5 to 15 minutes to let it fully adapt to your body.
  5. Don’t feel rushed. It’s ok to ask for privacy.

I would add:  Bring your own pillow so that your neck is supported while trying out mattresses; maybe bring an extra pillow case too.

And, I am reading the book The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Norman Doidge, M.D.  Chapter 2 is titled “A Man Walks Off His Parkinsonian Symptoms”  . . . how John Pepper has been able to reverse the major symptoms, the ones that Parkinson’s patients dread most, those that lead to immobility. He’s done so with an exercise program he devised and with a special kind of concentration . . .

All the “characters” in Dr. Doidge’s books (The Brain’s Way of Healing  and The Brain that Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science) and in Dr. Victoria Sweet‘s book (God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine) are guiding me on my journey as an advocate for my father.  And, I just know that my mom plays a huge role in helping me.

I thank everyone who has given me her/his time, energy, and prayers.

Here are links to websites I’ve relied on lately:

https://franceskakugawa.wordpress.com/category/caregiving/  Frances Kakugawa

http://www.writeradvice.com/ywmtdw.html  B. Lynn Goodwin

http://www.normandoidge.com/  Norman Doidge, M.D.

https://www.michaeljfox.org/  Michael J. Fox Foundation

Special thanks to Margie Yee Webb, Frances Kakugawa, Penny Manson, Debbie Ramos and her daughter Melanie who went out of their way to help me research specific items and to Mary, my sister Maria Leung, Linda Harris, Sue, Janet, and Elaine for being there in person.

Sincerely,

Writing Coach Teresa LeYung-Ryan

 

 

 

 

 

 

 

 

 

 

 

Author & Fanbase-Building Coach Teresa LeYung-Ryan says: “Reach out, not stress out. Enjoy your writer’s journey.”
http://WritingCoachTeresa.com

http://lovemadeofheart.com/

http://lovemadeofheart.com/blog/

https://www.youtube.com/user/teresaleyung

 

 

 

 

 

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