When you have a loved one approaching the end, you feel like you're walking along the edge of a cliff in the dark, but at least you've got plenty of company.
I'm still sifting through hundreds of responses to my July 17 column about my dad, who took a fall a couple of months ago and landed in a nursing home.
Readers have sent heartfelt ruminations on death and dying; postcards from the abyss. I've gotten an education on hospice and palliative care from readers, many of them doctors. And I've heard from seniors who tell me they'd rather die with grace than be kept alive without mercy.
"My life has been very full, but now it is getting very bad and I really want to go to that other world rather than suffer the pain and see my children so worried," wrote one reader.
My father, meanwhile, was scheduled to move home this weekend from the nursing home, with all the inherent advantages and challenges, particularly for my elderly mother. At 82, she now has a full-time job as a primary caregiver.
As my siblings and I began to contemplate the meaning of that, I got an email from Albert Chin of St. Barnabas Senior Services in Los Angeles. Chin took a good rip at Gov. Jerry Brown for dismantling the state's Adult Day Healthcare Centers, which have been a godsend for people suffering from the same physical and cognitive decline as my dad.
"I still find it somewhat incredulous," wrote an angry Chin, who said programs like the St. Barnabas center serve 35,000 Californians who can't afford to go anywhere else.
Medi-Cal had paid for many of those seniors to spend four to six hours daily at the centers, providing social interaction for the participants and needed relief to family caregivers. But Brown has decided to eliminate that funding after Nov. 30 this year. What made Chin even angrier was that Brown signed legislation allowing such centers to keep their doors open for people who can pay their own way or use private insurance.
Brown told reporters last week that the state is working on finding alternative services for the 35,000 seniors who will soon have nowhere to spend their days. There's talk of in-home services or other community-based programs (which, by the way, have had their own recent cuts). But advocates like Chin were suspicious, and the Times reported last week that 17 centers had already indicated they would shut down because of funding uncertainties.
When I visited St. Barnabas last week, it was like walking in on a family gathering. Most of the clients have Alzheimer's or dementia, but although they go blank on some of the details of their life stories, they seemed engaged with each other and the staff.
As hard as it is to accept my father's decline, it would be nice to have such a place available to him, a place he could socialize several hours a day and give my mother a break at the same time. But I doubt he'd qualify for Medi-Cal, because he's in that cruel middle ground between having too much money to qualify for help and not enough to pay his own way for very long.
I could see him at St. Barnabas, though. When I was there, an elderly woman was cranking a little cage filled with the wooden balls for the Bingo game. My father would have wanted in on the game. At another table, 95-year-old Miss Emma was knitting a scarf with help from Miss Rebecca. The participants were black, white, Latino, Asian and then some, with 11 languages spoken, and daily activities that include word puzzles, physical therapy, exercise and singing.
These are frail people, though, physically and mentally. Maria Moreno, a certified nursing assistant who's been honored for her work at St. Barnabas by an L.A. County Alzheimer's group, said she fears that many of the gang here need the daily attention they get here and that without it they'll end up in emergency rooms or nursing homes.
Her boss, Lusine Nalbandyan, quoted sobering stats on the far greater cost of institutionalizing the elderly.
Which raises the question:
When the state no longer makes the $76 daily Medi-Cal payments for these clients, will there be any savings for taxpayers?
"If just 20% of the people currently in adult day healthcare go to nursing homes, we could wipe out the savings," said state Assemblyman Bob Blumenfield (D-Woodland Hills).
In other words, this is a penny-wise, dollar-foolish cut. And it's another example of incoherent, jumbled healthcare policies in a country of rapidly aging boomers. A country that spends billions keeping terminally ill patients alive with pacemakers and feeding tubes only to inflict more suffering on them.
Not all adult day healthcare centers are model operations; some have been accused of fraud and abuse. Those should of course be shut down. But Blumenfield said that on the whole the centers provide an invaluable service to thousands who can't afford any alternative.
He tried to salvage at least half the roughly $170-million program. But his bill to continue providing services to the most acutely ill clients was vetoed last week by Brown.
At St. Barnabas, Adina Mori-Holt arrived in the late afternoon to pick up her 95-year-old great-grandmother, Yayoi Oki, and take her home for the evening. Mori-Holt said that if the center closes, her mother might have to retire early to take care of Oki. Like many elders, Oki wants to live at home, not at a nursing center.
"I only live once," says the statement prepared for Oki by her family and St. Barnabas, which is planning to have several seniors testify at a hearing and protest the cuts. "Let me live my life now in dignity."