Family caregivers ask state for more support with Alzheimer’s, end-of-life care
By Martin Kidston
More than a decade ago, Barbara Dryden set aside her ambitions to care for her dying father and aging mother, the latter a former golfer and speed walker whose medals speak to her youthful skills and active lifestyle.
But as time passed, Dryden watched Parkinson’s take her father’s life, then as Alzheimer’s took hold of her mother. The bouts of agitation and memory loss associated with the disease have been challenging enough, though Dryden has endured moments far worse and far more terrifying.
“It was devastating to me when I realized I was no longer working or doing my volunteer work, and that my mom wasn’t doing her volunteer work,” said Dryden. “It didn’t just take my mom out, it took the caregiver out, too. People don’t know what it does to the caregiver. That focus needs to change.”
Dryden joined a dozen other sons and daughters, husbands and wives in a meeting Monday with Gov. Steve Bullock. Seated around a table at Missoula Aging Services, each recounted their own struggles as a caregiver, from stress to financial hardship.
With the state’s population aging, they asked for assistance, saying the state must do more to help families like theirs deal with the slow passing of a loved one.
“I’m a retired physician who spent nearly 40 years in health care, and I was never as stressed as I was as a caregiver,” said Richard Blank, who spent 10 years caring for his wife, who succumbed to Alzheimer’s. “Respite is vital to maintaining that caregiver’s health, and resource availability is extremely important.”
In 2000, the number of Montanans over the age of 65 stood at roughly 115,000 people, according to Census data. By 2013, that figure is expected to grow to nearly 275,000 people before jumping to 325,000 by 2060.
To address both the societal and health care needs associated with aging, Bullock plans to ask the 2017 Legislature to partner on a number of causes, including increased support for aging services. That includes funding for Meals On Wheels, transportation to get seniors to appointments, and more community resources and support groups to help families navigate the challenges of aging.
“Advocates came together as a group and made that request, saying we need to provide those services, and we’ll be supporting that effort,” Bullock said. “We’re also going to ask for and request support for funding of family caregivers in the Respite Lifespan program.”
According to the AARP, Montana has approximately 118,000 caregivers who provide 110 million hours of unpaid care. If paid $12.97 per hour, the total economic value of that care would equal roughly $1.4 million.
Bullock said that investing in Respite Lifespan would assist those family caregivers as they tend to loved ones, even if that means giving them a break.
“These are individuals that help out either with their parents, a grandchild or others, and sometimes giving them a little break can go so, so far,” Bullock said. “It can take an emotional and physical toll juggling work, family and other obligations. To provide a little assistance with some additional investment will help our health caregivers take a break or continue the job they need to.”
Bullock said he’ll also ask the Legislature to pass the Care Act. Doing so would increase the coordination of care and decrease hospital readmissions, he said.
“It’s model legislation that was passed in 33 states thus far and was supported by AARP,” Bullock said. “It ensures caregivers are given the information they need as far as follow-up care information when a patient is discharged from the hospital.”
Those present on Monday said the help offered through Missoula Aging Services has been transformative in helping them care for an aging or dying loved one. And those services are expected to grow in the coming year.
Patti Holkup, a member of the Missoula Coalition on Aging and Alzheimer’s – a statewide working group – said community discussions on the issue will begin this month, and support groups to help with early memory loss are now forming.
“The goal of our group – our education committee – is to raise awareness on the prevalence and impact of Alzheimer’s, and to provide education and support from the point of diagnosis,” said Holkup. “We’ll focus on primary care providers who may not know what the services are.”
Other caregiver resources are expected to follow in the months ahead.
“We need to recognize that the primary caregiver becomes the decision maker as the process gets along the way, including end-of-life decisions,” said Blank. “That needs education. Dementia is complex – the whole process is extremely complicated. You never know what’s going to happen next, so people get caught in situations where they don’t plan.”
Contact reporter Martin Kidston at firstname.lastname@example.org