When I think about my grandpa before he moved in, an image of white hair, brown eyes and the most improper cackle of laughter pops into my head. But after he could no longer live in his southern Idaho home and transitioned to live with my parents in Montana, 500 miles from where he had spent the last 60 years of his life, the image in my mind changes.

 

The mischievous gleam in his eyes evaporated over the year he spent with us and the once ever-present grin appeared only rarely. Instead, his charms were replaced with one heart-breaking and repetitive question: “When are you going to take me home?”

 

In Oct. 2021, my mother became the primary caregiver for her 99-year-old father. His brain had been broken down by a series of what were described to us as mini strokes or transient ischemic attacks.

 

As a family of health care workers, we had an advantage when confronting dementia care for my grandpa, but still we were not prepared or equipped to be caregivers. Even with abundant financial reserves, the woeful patchwork of support services in Yellowstone County were difficult to access, and we all suffered for it.

 

As the Silent Generation peters out and the youngest of the baby boomers start racking up their senior moments, laymen everywhere are filling in the gaps in America’s long-term care system.

 

In the United States, about 38 million people are caring for their ailing loved ones, providing about $600 billion worth of unpaid services, according to data by AARP. And by 2050 the share of the global population 80 years old and older will more than double.

More than one third of family caregivers struggle to coordinate care for their loved ones, according to data from the Family Caregiver Alliance. And women are doing the majority of the caregiving in the U.S., making up about two-thirds of all unpaid caregivers.

 

As the sixth oldest state in the country, Montana has felt the effects of what’s nicknamed “the silver tsunami” more intensely than most other states. But access to senior and long-term care has been dwindling in the years since the pandemic and innovation in senior service work has been slow to develop.

 

Caregiving by a professional or a family member is getting more complicated and solutions that address the aging crisis will need to be multifaceted. Strengthening the workforce with education and benefits that reflect the professionalism the field requires and investment in the community services are the first steps, according to Montana’s long-term care leaders.

 

While legislators agreed to make a historic investment in Medicaid earlier this year, which long-term care providers rely on almost exclusively, policies that would have bolstered services for seniors and their caregivers were voted down or vetoed by Gov. Greg Gianforte.

 

Gianforte shrugged off the closure of 11 rural nursing homes in 2022, citing low census and a growing desire among Montanans to age in their homes. The closures affected at least 300 residents, many of whom were forced to move away from their hometowns.

The limited access to nursing home beds also increased pressure on a strained home and community-based health system, which providers around the state say will need timely investment in order to successfully transition away from expensive institutionalized care.

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Start with education

Lindsey Klebenow has a strong voice, but there’s one question that causes her to put her hand to her heart and tears well up in her eyes. She became the primary caregiver for her husband, 35, after a traumatic brain injury damaged his short-term memory.

In the years to come, the injury will make him more susceptible to dementia and other neurodegenerative disorders like Parkinson’s.

 

Klebenow doesn’t flinch at the mention of this fact. With a master’s degree in gerontology and the owner of Heart-to-Heart Home Care in Bozeman, she knows the ins and outs of caregiving better than most.

 

What does scare her is what will happen to her husband if she can no longer care for him.

 

“I have to fight for myself. I’m fighting for where my husband is going to go if I die in a car accident tomorrow,” Klebenow said. “He is such a strong and smart human being, but (in a residential facility) they’ll over medicate him.”

 

For Klebenow, the fight starts with education.

 

There is a significant gap in education for those caring for people with dementia, which stretches across all aging services, Klebenow said. While professional caregivers might receive some training, family caregivers face the challenge with no education at all.

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For example, a dementia patient only hears and understands every three-to-five words spoken to them due to slow processing of the brain, Klebenow said. Worsening hearing and eyesight that accompanies old age adds another layer of frustration.

A lack of understanding from the caregiver can cause the senior to feel misunderstood, depressed and anxious which then leads to negative interactions and behaviors often associated with the disease such as anger, frustration and apathy.

 

Without mitigation, these behaviors are difficult to manage and burnout follows for both professional caregivers and families.

In a facility, burnout affects staff retention, quality of care, increases use of psychotropic medications and can lead to low customer satisfaction. For family members, their mental health worsens, feelings of inadequacy increase, relationships may erode, and in some cases, can create an unsafe home environment.

 

What’s missing in memory care today is empathy, Klebenow said. But it can be hard to reach that deep level of understanding when normal reasoning is lost and repetitive questions grade on the nerves.

 

Mom had nowhere to go

Being in my early 20s, I had a job and a home of my own to escape to after listening to my grandpa’s frustrations repeated over and over again. But for my mom, there was nowhere to go, and the irritability between the two mounted. Emotional wounds from the past resurfaced and made the final months we had with him complicated.

 

“It’s your way or the highway,” my grandpa would grumble when mom would explain that he had already had one glass of wine. He didn’t remember that he had already sipped down his glass and guessed that mom was gatekeeping one of life’s little pleasures.

 

A glass of wine at the end of a long day was one of the things the two had enjoyed together for years, but when the dementia set in, she eventually had to stop the practice in order to keep things civil.

 

Though little squabbles like this were completely forgotten within 10 minutes, the emotions of those interactions linger, perpetuating bad moods, depression and anxiety for both the carer and the senior, Klebenow said.

As his dementia grew worse, it was clear that it takes a diverse skill set to care for a 99-year old man with limited mobility and no short term memory.

 

Lack of infrastructure

The workforce shortage and the increasing demand for services means families in Montana are doing more than they have in the past. Their work is valued at $1.76 billion annually, accounting for a $350 million increase from 2021, according to data from Montana AARP.

 

Caregiving plays an essential role in Montana’s economy, but the workforce that’s needed to arm families with the necessary skills and services is scarce, especially in rural Montana.

 

Low wages and little to no benefits characterize direct care work and fail to reflect the value of the profession, said Margie MacDonald, interim executive director of Big Sky 55+, an advocacy group for seniors.

 

While the investment legislators made in Medicaid earlier this year was used by providers to raise wages for workers, there are many direct care jobs that did not reap the rewards of the increase.

 

With no state licensure for caregivers providing housekeeping, meal prep, socialization and respite, these services aren’t covered by Medicaid or Medicare. But if seniors receive these supports when it’s needed, they’re able to stay at home longer and out of expensive institutionalized care.

 

During the 2023 State Legislature, one bill passed by both the Senate and the House would have expanded the state funded Community First Choice program, which makes in-home care support accessible to seniors before they require expensive nursing home care. But the legislation was vetoed by the governor.

 

“The struggle we had to address a rapidly deteriorating infrastructure was alarming. There was no proactive planning to move us forward,” MacDonald said. “It’s just not feasible to think that we don’t need a strong system of supportive care.”

With services scattered haphazardly across the state, MacDonald sees a need for a conglomerate of services with one clear access point.

 

No Wrong Door (NWD), presented to legislators in February by ADvancing States, is an initiative that creates a roadmap for developing a one-stop resource and access point for long-term services and supports. The organization awards grant money to implement the program, but it’s up to state agencies, like the state’s unit on Aging Services, to build up the infrastructure and train their employees.

 

Nationally, about one third of families struggle to coordinate care for their loved one, according to data from the National Alliance for Domestic Workers. The NWD system aims to coordinate disparate long-term care services through various state and local agencies.

 

“This is an investment that pays for itself by effectively diverting people before they land in high acuity services,” MacDonald said.

 

We struggled to find support

In my family’s caregiving experience, I often think about what we could have done differently to make the last year of my grandpa’s life happier. But between the emotional toll it took on all of us and the difficulty of accessing things like respite care, I think we did the best we could.

 

On the few occasions we managed to find an agency caregiver to sit with my grandpa while my mom attended the painting class that connected her to the outside world, a different worker would arrive at our door every time.

 

We never had the chance to build trust before leaving them alone in our house with our loved one. The last time we had a caregiver come in, my grandpa nearly called the police because there was a stranger in the house.

 

We had never had this happen with other caregivers. We still don’t know what circumstances caused my grandpa so much agitation, but the experience rattled us.

 

The lack of licensure for home care providers means these workers are rarely vetted and low wages fail to reflect the professionalism the job requires.

 

Before my grandpa moved to Montana, we managed to find a live-in caregiver, which allowed my grandpa to stay in his own home for a while longer.

 

However, the arrangement with the caregiver grew more strained with every month, eventually culminating in a bout of road rage that led her to assault another driver.

 

When the cops arrived at my grandpa’s house, her employment with us ended abruptly.

 

Building up

The dearth of elder care choices have caused 16% women, particularly women of color, to leave their jobs and 13% of women caregivers retired early in order to take care of an elder, according to the Family Caregiver Alliance. The study also found that 29% of women caregivers passed up a job promotion, 33% decreased work hours, 22% took a leave of absence.

 

Between the loss of income and, in some cases, the loss of employer funded health insurance, the financial strain is significant.

Following the closure of 11 nursing homes in Montana, taxpayers should expect to see a rebalancing of Medicaid funding, said Mike Batista, government affairs director for Montana AARP.

 

“The bulk of Medicaid money goes to nursing homes. But now I hope that we see a repurposing of that money toward things that could be useful,” Batista said. “We need to look at the needs of the community.”

 

National AARP officials are considering ways to compensate family caregivers for their services and find ways to direct health insurance benefits to them.

 

For agency caregivers or caregivers in nursing homes, if the company offers health insurance, they could receive increased Medicaid reimbursement, Batista said.

 

“We need to ask our lawmakers, ‘where do you see opportunities to support family caregivers,’” Batista said. “We need to recognize that family caregivers need help and support. We just can’t wait any longer.”

 

The Area Agencies on Aging, the outcome of the 1965 Older Americans Act, created a structure at the federal, state and local level to disperse funding and develop programs for the nation’s elderly.

 

Montana’s 56 counties are split into 10 Area Agencies on Aging, each of which has unique partnerships with the services in their respective regions.

 

Batista suggested expanding these services, which would also be an excellent touchstone for implementing the No Wrong Door system recommended by MacDonald with Big Sky 55+.

 

“My parents have contributed so much not only to their family but to their community. And we haven’t made (aging) a priority,” Batista said. “We need to recognize we need to make a commitment to them. We need to get some traction on this issue.”

 

I wouldn’t trade it

While our experience caring for my grandpa was far from perfect and would have been greatly improved with more support, I don’t think any of us would trade the time that we had with him before his death.

 

Data shows that caring for a family member comes with a great sense of fulfillment.

 

And from personal experience, I would have to agree. It was much better to have him home with us where we could comfort him, laugh with him and talk about the distant memories that seemed to have taken better hold than the more recent ones.

In those moments I knew he was his same old self, no matter how badly his body betrayed him. And I wouldn’t trade those little reminders for anything.

 

Every time I left the house that year, I would tell my grandpa I loved him. And every time, he'd smirk at me as if he thought it was ridiculous for us to remind each other of our love all the time. But then he’d take my hand, squeezing it with whatever strength he could muster and say “I love you too, honey, you know that.”