Caring For A Loved One At Home: A Five Year Diary

This is a story of one family’s concerted and loving efforts to combine their energies and resources and make smart decisions about how best to care for an aging parent at home. Janet Pappas’ account of how she, her husband and her sons shared responsibilities, took turns with various duties, dealt with institutional hurdles and secured some additional caregiving help, raises questions about how other families are coping. It also raises the question of what new public policies need to be enacted to address kupuna care in Hawaiʻi. Here, in her own words, is her caregiving diary:

“Our story of caring for a loved one at home is not unique. My mother-in-law, Florence Yasuda, was living on her own, doing her own cooking, cleaning, laundry and yardwork and she walked or took the bus to do her shopping. But in September 2011 Florence, then 93, fell while sweeping her driveway, breaking her upper arm.

Fortunately, Medicare benefits were available for a nurse’s evaluation, initial physical therapy (PT) and a social worker to suggest further Senior resources. None of these resources could, however, provide her daily care, prepare lunch, do her errands or yardwork or continue the PT she needed—without a hefty cost.

Reconfiguring our living arrangements: My husband, Ron, moved into his mom’s house, taking several weeks’ emergency leave. He assisted with her personal care, physical therapy, housekeeping and meal preparation. We drew support from caregivers for Ron’s aunt who lived across the street. After a year and a half, Florence’s injury was essentially healed.

In early 2013 at age 94, on one particularly ambitious day, Florence washed several loads of clothes, and brought them up two flights of stairs. Unexpectedly, she fell backwards, hitting the back of her head. Our younger son who lived downstairs, heard her fall and immediately rushed in to help. She was not severely injured, but did suffer from hallucinations and some neck pain for some time afterward. We again spent many nights at her house and resumed many of her chores until she regained her health.

A year later Florence had an incidence of severe lower back pain. Her doctor made a house call, said we could try some pain patches and recommended another Medicare evaluation. A physical therapist was assigned to work with Florence.

Unfortunately, the pain patches only added more anxiety as well as some hallucinatory reactions. The physical therapist taught us several back exercises and we helped Florence with these exercises.

A visiting cousin, Debbie, cared for Florence 24/7 for nearly three weeks and was key in bringing Florence back to health. After Debbie returned home, we needed a new plan.

Reconfiguring our lives… again. Eventually, my husband (still working) and I (now retired) and our two 20-something sons (both working) devised a plan for Florence’s care that involved two residences, four family members, two caregivers and an adult day care service:

• Mon: Aiea Adult day care home (10-3); Ron and Jan (all night)
• Tues: Aiea Jan (all day); Ron and Jan (all night)
• Wed: Aiea Adult day care home (10-3); Jan drives Florence to Kaimuki and spends the night with her
• Thurs: Kaimuki Troy (all day and all night)
• Fri: Kaimuki Paid caregiver (8 hrs); Jon (all night)
• Sat: Kaimuki Paid caregiver (8 hrs); Ron (all night)
• Sun: Kaimuki Ron (am) drives Florence to Aiea; Ron and Jan (all day and night)

This plan worked almost flawlessly for a year and a half -- until November 2015 when Florence fell and broke her hip. She was taken to Pali Momi Hospital. She left the hospital after eight days, weak from lack of sleep, strong pain medication, lack of appetite and a hospital-acquired urinary tract infection.

We chose a nursing home about four miles from our Aiea home. On Day Five of her stay, she had an incident at breakfast (stiff, clenched hands; garbled speech). She was taken to a nearby emergency room. For the next two days, Florence slept without waking to eat, drink or use the bathroom. When she awoke, she ate with appetite and fed herself. Her speech was no longer garbled and there was no more stiffness in her limbs. But an oxygen tank arrived with her from the hospital and became a part of her standard equipment for the next several months. Florence continued to improve over the next six months. Ron visited the nursing home twice daily, and stayed for dinner. He did exercises nightly with Florence in her room to strengthen her legs.

Florence “graduated” from the nursing home in early August 2016, eight months after arriving. Our options for Florence’s living situations were:

• Remain at the nursing home: $9,000/mo
• Live at a foster/respite home: ~ $5000/mo
• Live at home: “Free” (provide care ourselves, hire caregivers, find a day care)

Florence received PT and is now walking with a walker, and can descend/climb 16 stairs (with assistance) at our Aiea home. We also learned of a new nearby day care. Ron chose to retire a year early. This is our new schedule:

• Mon: Adult Day Care (9-3); Handi-Van pickup/drop off; Ron/Jan at night
• Tues: Caregiver (9-3); Ron/Jan at night; Troy (younger grandson) visits early in the week
• Wed: Jan and Ron (all day/all night)
• Thurs: Caregiver (9-3); Ron/Jan at night
• Fri: Adult Day Care (9-3); Handi-Van pickup/drop off; Ron/Jan at night
• Sat: Jan and Ron (all day/all night); occasional caregiver
• Sun: Jan and Ron (all day/all night); Jon (older grandson) comes to visit

Florence, 98, is able to participate in our daily lives, has a healthy appetite, loves watching the chickens (and us) crisscross our yard while she sits on the back lanai. She often says ”Thank you” and tells us how lucky she is. She still weighs 95 lbs.

And how are we, the caregivers, doing? We feel fortunate to have enough funds to hire outside help. We alternate who gets up at night. We do our best to keep Florence comfortable and take her on outings.

Many others are not so lucky: They don’t get enough sleep. They never get a respite from providing non-stop care. Their loved one may require skilled nursing care which they can’t afford. They may have to care for their children as well as their parents. They will never have enough money due to many factors, including the high cost of medications, caregivers and premature retirement.

We cannot abandon our seniors. If businesses, lawmakers and the community come together, we can provide options to caregivers that can ease the burden that so many of us are feeling or will feel in our lifetimes.”

Visit http://www.care4kupuna.com/ to learn more and add your voice to the call for better caregiving options.