A fight to live independently in her apartment is also a fight to stay alive, according to senior citizen Hazel Wearne.
From her residence at Marine View Apartments, the 72-year-old Juneau woman said that while she was living in a nursing care facility last year she nearly lost her will to live and was close to calling a hospice service to help her die.
"I was going to stop eating," she said.
Wearne suffers from Parkinson's disease, diabetes and congestive heart failure. At times, her hands shake so much she can't open her prescription pill bottles. Three state-paid home health care workers look after her each day.
The state's personal care assistance program allows ill people such as Wearne to receive the same services that nursing homes offer - help with bathing, cleaning, cooking, and medication - but at home.
Wearne said her freedom is less sweet now that new state regulations are dropping hours from caretakers' schedules.
After costs ballooned from about $8 million to $80 million since 2000 - an increase officials blamed on billing abuse - the state proposed new rules to monitor assistants.
When making the changes, the Alaska Department of Health and Social Services said that without them the program's cost would soon swell to $97 million a year. Former Commissioner Joel Gilbertson said the abuse involved some assistants providing services not covered by the program or not having proof that services were made.
Changes to the regulations mostly involve allowing a limited time for chores and not allowing caretakers to bill the state for being on standby.
Wearne's time is shortened in the mornings and evenings. Now she lies in bed for two hours after waking until the caretaker arrives, and at night she takes her medication prematurely before the last assistant leaves, she said.
Quadriplegic John Hinchman said before the regulations went into effect in late November, he applied for an extra 10 hours of help beyond his existing 89 hours. Instead, the state cut him down to 70.
"I'm going to have to buy a stopwatch for each of my workers," Hinchman joked. For example, his caretakers have exactly eight minutes to brush his teeth and 10 minutes to wash his hair, he said.
Caretakers previously did not have such time limits. Hinchman said workers are not getting paid for some chores because they do not want to leave him in the middle of something before he is finished, such as sitting on the toilet.
Graham Smith, operator of Juneau-based Priority Home Healthcare, said that among people who want to stay out of nursing homes, Hinchman is probably Alaska's biggest challenge. He may also be the state's greatest success story for home health care services, Smith said.
Hinchman must be rolled on his side every two hours while he sleeps at night or he will drown from fluids filling up in his lungs. His two nephews care for him - one of them living in his home and taking the night shift.
Smith calls him a success story because Hinchman leads an active life by attending classes at the University of Southeast Alaska and living with his daughter.
Due to the severity of his spinal injury, nursing home officials in Juneau said he could never make it on his own.
The state in 2001 permitted friends and relatives of clients to be paid caretakers, which accounts for the growth of beneficiaries from 1,300 in 2001 to 3,800 recorded last year, Smith said.
The consumer-directed program, in which the client can choose the caretaker, is modeled after a handful of others in the country. But some states are doing away with the strict time limits, he said.
Smith said the program gives people who are ill or disabled but are still lucid the choice to stay out of nursing homes.
Hinchman, a 54-year-old former fisherman from Hoonah, said he experienced a lack of attention during his stay in Wildflower Court in Juneau and another nursing home in the Providence Health System in Anchorage. On a given day, one nurse is looking after six to nine residents at those places, he said.
At Sitka Community Long Term Care, Wearne said she gained 30 pounds being stationary and eating foods high in carbohydrates. Much of that food was instant-made, she said.
Viewing nursing homes as certain death, she added that they don't stimulate her mind, and that they feel depressing.
When she receives assistance to walk, Wearne enjoys working with ceramics at Juneau's senior center and trips downtown.
"I'm fighting to stay at home," she said.
Andrew Petty can be reached at firstname.lastname@example.org
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