Upper Valley family fights for Medicaid coverage amid Alzheimer’s crisis

In the 40 years that they were married, Jodi and Hal Beebe worked hard to take care of each other amid a slew of health struggles that affected both of them.

Jodi has had about a dozen surgeries over the years to combat herniated discs and arachnoiditis, a rare neurological disorder caused by inflammation of the membrane surrounding the spinal cord.

Hal dealt with back, shoulder and head injuries he suffered while working at a solar company and other jobs.

When one of them needed extended time off of work to heal, the other would jump in to pick up the slack and provide for their two daughters, Jessica and Alexis Beebe.

“They were always a team, no matter what,” Jessica, now 35, said. 

That dynamic of mutual care was thrown on its head when Hal was diagnosed with dementia in 2020 at age 54. 

As his condition worsened, Jodi scrambled to find caregivers to look after her husband and the health insurance to cover the cost while working night shifts as a nurse at Gifford Medical Center in Randolph. 

Without health insurance to cover Hal’s care, she drained her retirement savings and racked up credit card debt paying for caregivers and household expenses. The worse his condition became, the more she feared something bad would happen if she couldn’t get him adequate help. 

Last month, those fears came true. 

Jodi was driving home to the couple’s apartment in Vershire on March 2 after a night shift at Gifford when she was delayed by the response to a fire in East Randolph. In the meantime, Hal’s caregiver had to leave for the morning to take her son to school, leaving him unattended for about an hour and a half.

On her drive, Jodi received a call that there was a fire at the apartment. Unsupervised, Hal had turned on the stove, which ignited a wooden cutting board that was covering a crack in the glass stovetop so that he wouldn’t cut himself. 

The blaze destroyed much of the five-unit apartment building, displaced 10 tenants and killed the Beebes’ dog and a neighbor’s three cats.  

Emergency services took Hal to Dartmouth Hitchcock Medical Center, where he received treatment for smoke inhalation. Doctors determined his Alzheimer’s had reached an advanced stage. He stayed in the hospital for weeks after as the hotel Jodi has been living in since the fire wasn’t safe for his needs.

These delays create problems for hospitals and other patients, too. On a given day at DHMC, 50 to 80 patients are clinically ready for discharge, “but we can’t support their discharge because they don’t have a guardian or they have a pending long-term Medicaid application process,” said Courtney Tanner, Dartmouth Health’s senior director of government relations. 

A couple weeks ago, Hal was transferred to the Jack Byrne Center for Palliative and Hospice Care in Lebanon.

Hal Beebe died on April 4. He was 60. 

Two weeks later, Jodi is still fighting to get him approved posthumously for long-term Medicaid, which would cover the hospital bills they accumulated.

The family already had roughly $20,000 in outstanding hospital bills from when Hal took multiple trips to the emergency room from falling and hitting his head last year.

The Beebes’ struggles are illustrative of a larger gap in the system when it comes to people with early-onset Alzheimer’s. Roughly 200,000 Americans between ages 30 and 64 have younger-onset dementia, although prevalence studies are limited, the Alzheimer’s Association, a Chicago-based organization that supports global research into the disease and advocates for risk reduction and support, reported last year. 

Delayed diagnoses and convoluted applications for health insurance can make it harder for patients to access and pay for the care they need.

Navigating the bureaucracy puts additional stress on family members who are strapped with the responsibility of caring for loved ones with the disease, said Kathy Harvard.

Her husband, former Dartmouth College Outing Club Director Andy Harvard, lived with younger-onset Alzheimer’s for over a decade until his death in 2019 at age 69. 

Caregiving is “a long-term commitment,” especially in early-onset cases, Kathy said.

“The financial hardship of the disease is very significant for the entire family,” she said. 

A longtime partnership

Hal and Jodi went to the same high school in Connecticut, but back then he wasn’t the type of guy she typically went for. She dated jocks and geeks, and he was a “bad boy” with long hair and a feather earring, she said. 

But when her car broke down on the way to a party they were both attending, she asked him for a ride. Later, she invited him to the movies to pay him back for the favor, which gave way to a friendship and soon something more. 

“When he hugged me for the first time it was like electricity went through my body,” Jodi said. 

The couple were married two years after high school graduation. They both enrolled in college, but didn’t make it very far, instead, Jodi found work as a nurse’s aide while Hal took a job cooking in a restaurant. 

Eventually, Jodi went back to school to get her nursing license and then her nursing degree in 1990. 

In 1997, the couple moved to Bradford, Vt., to raise their daughters, who were 6 and 3 at the time. Jodi had loved Vermont from vacations she took there with her parents, and she and Hal always dreamed of retiring there. 

When Hal’s stepbrother died unexpectedly, they figured there was no time like the present, and decided to make the move while they were still young. 

Jodi worked as a paraeducator and Hal built furniture at Pompanoosuc Mills in East Thetford. The couple were thoughtful about how they divided parenting and household duties. 

“There was never: ‘Come change your kid,’ kind of thing,” Jodi said, and Hal took an active role in raising their daughters. 

He was a “girls’ dad,” who would do his kids’ hair and paint their nails, said Jessica, who lives in Newbury, Vt. 

When the girls had a half day at school, he’d pick them up while Jodi was at work. On holidays Hal did the bulk of the cooking, and she’d handle “gravy and dessert,” Jodi said. 

Hal also was “a lover of the land and the earth and just cared about the environment and the people in it,” said Alexis, 32, who lives in Augusta, Maine.

From him, she learned how to recycle, identify trees and discern which wild mushrooms were safe to eat. 

After about three years at the mill, Hal left when he learned he was allergic to hardwoods and took a job at a solar company where he eventually became project manager. 

While on the job, a loose tractor trailer garage door fell and injured his shoulder and left scarring on his head, though no lasting brain injuries, Jodi said. He took time off to get rotator cuff surgery and later took a job in construction and then cooking, including a stint at the Bradford Mini Mart in 2016. 

‘Caregivers always came first’

It was around this time that Jodi started to notice Hal becoming forgetful. 

He’d repeat the same stories, not realizing she’d heard them many times over, or he’d insert a non sequitur into a conversation, then play it off as though it were nothing. 

Other times, he’d forget to pay bills, which Jodi wouldn’t know about until she received a call that their electricity was about to be shut off. 

His mom and grandmother had died of early-onset Alzheimer’s, so Jodi wondered if he might have it, too, but Hal was “a very smart man, so he was able to hide it for a very long time,” she said. 

Then in 2020, he was fired from his job as property manager at a fishing club in Sharon for forgetting to complete certain tasks, Jodi said. 

After Hal lost his job, he eventually was diagnosed with dementia. And his condition was much worse than Jodi had suspected.

One of the diagnostic tests involved writing a specific time on a clock; “he couldn’t even get the 12 numbers on the clock,” Jodi said, nor could he remember the name of their high school or the year they graduated. 

“I was shocked,” she said. “It sucked because we had future plans, and we knew that was going to be the end of all our future plans.” 

The couple dreamed of owning a bed and breakfast together, or traveling.

At the time he was diagnosed, Jodi was unemployed because of her back problems. After getting a surgery that mitigated her pain, she returned to work around 2022. 

When she started working night shifts at Gifford in 2023, she still felt comfortable leaving Hal alone. But a year later, that was no longer the case. 

The only kitchen appliances he could use safely were the microwave and Keurig coffee machine. She took his driver’s license away because he couldn’t figure out how to get home, even with her in the passenger seat. 

She initially enlisted the couple’s upstairs neighbor to look after Hal when she was at work. They made sure he ate and spent time outside. 

When Hal became incontinent in the summer 2024, she had to switch to professional caregivers she sourced through former health care jobs. 

The apartment, which the Beebes moved into about a decade ago, had a bathroom that was tucked away, so when Hal became incontinent, he’d often urinate in the kitchen sink. The cabinets became stained from times he missed: “I could not get rid of the smell,” Jodi said.

When she started hiring professional caregivers, she paid them about $25 an hour, more than half her $40 hourly wage at Gifford. Some weeks she was spending more than $1,500 on caregivers.

The cost began to eat away at her savings. 

She stopped paying their credit card bills and dipped into her retirement fund.

“I couldn’t pay anything except our basic necessities,” Jodi said. “Caregivers always came first because I can’t do anything without them … even if it meant paying rent late.” 

The more Jodi worked, the more hours she needed a caregiver to look after Hal, but she couldn’t see another option. 

“I was working a lot of overtime. We were pretty short-staffed and I couldn’t turn down overtime. I always needed the money,” she said. 

She also couldn’t rely extensively on family to share the load of caregiving. Her mom planned to move in with the Beebes in 2024 to help out, but in fall of 2023 she suffered a stroke which made that impossible, leaving Jodi to piece together a care plan on her own. 

On weekends when she didn’t have her kids, Jessica would drive down from Newbury, Vt., to look after her dad while Jodi was at Gifford, but as a single parent with young kids, she could only do so much. 

Bringing Hal to a memory care facility also wasn’t an option. Vermont is among the most expensive states for memory care, with costs averaging $10,400 a month, according to U.S News and World Report. Hal had also voiced the desire to stay at home, rather than moving to a care facility, Jodi said.

While juggling work with looking after Hal, Jodi was also grappling with the pain of watching the person she loved slip away before her eyes. 

The hardest thing to lose was talking to him about her day or what their daughters were up to. 

“He lost that ability pretty early on and that’s what I missed the most, and the companionship. We’ve been best friends forever, you know?” she said. 

Obstacles to care

Eventually, paying caregivers $25 an hour became unsustainable. At the time of the fire, Jodi was paying a family friend $10 to look after Hal. 

She also weaned Hal off the blood thinners he was taking to combat clotting because she could not afford the medication, which cost $1,000 for a three month supply. She gave him baby aspirin instead, until Jessica called the pharmaceutical company and convinced them to provide the medication for free, Jodi said.

Long-term caregivers aren’t covered under private insurance and qualifying for Medicare and Medicaid can be a complicated and time-consuming process for individuals under 65, meaning the burden of paying for care often falls directly to families, said Harvard. 

Last year the median annual cost of a non-medical, at-home caregiver working 44 hours a week in Vermont was $102,960, according to a Cost of Care survey conducted by CareScout, a Virginia-based company that helps families navigate the complexities of long-term caregiving. 

“Oftentimes, people are piecing together whatever they can,” Harvard said. 

About a year ago, Jodi and Jessica started working on getting Hal on long-term Medicaid, which would cover the cost of care. To qualify, the state has to approve the applicant for disability through Social Security. Applicants also have to show that they meet the monthly income maximum of about $3,000 and the asset limit of $2,000.

Jodi and Jessica ran into obstacles on both counts. First, because Hal was fired from his job at a fishing club after a gap in employment, the state considered his time at the club “a failure to return to work,” Jodi said. Because Hal was diagnosed with dementia after he was fired, the state couldn’t determine that he lost his job due to his disease. 

Kathy and Andy Harvard experienced something similar. In 2008, the college fired Andy from his position as Dartmouth’s outing club director, citing poor job performance, the Valley News reported the following year. Nine months after he was fired, he was diagnosed with younger-onset Alzheimer’s. 

One of the greatest barriers to health coverage for people with early-onset Alzheimer’s is not getting a diagnosis soon enough, Kathy noted. 

“The HR department in your business doesn’t recognize” the signs, she said, which can present as difficulty planning, trouble with completing familiar tasks, and personality changes, all things that can be easily misdiagnosed. (When Andy Harvard first sought medical counsel, he was diagnosed with depression, not Alzheimer’s.) 

The other obstacle Jessica and Jodi have run into when getting Hal approved for long-term Medicaid is the income threshold. Even though Jodi has gone into debt paying for Hal’s care, she still makes above the threshold to qualify. 

It’s taken months to get the state to declare Hal a household of one with no income so that he can access Medicaid. 

In general, the application process has been time-consuming and “extremely stressful,” Jessica said. 

Oftentimes, no one from Medicaid would return the family’s calls. Every few weeks they’d receive a letter requesting additional documentation. 

“It’s multiple phone calls and hours every week, just to find out that there’s nothing I can do but wait,” Jessica said. 

Meanwhile Hal “could have been having a better quality of life this whole time,” if he’d been able to access coverage sooner, Jessica said. 

The week before the fire, Jodi left a message with the state Medicaid office. She screamed for help: “I’m drowning here!” She called back to the next day to apologize and left another message asking for support. No one called her back. 

The Department of Vermont Health Access did not respond to multiple requests for comment by phone left by the Valley News.

The fire at the Beebes’ apartment “was exactly what I was worried about,” Jodi said. 

Bills that outlast death

In the weeks following the blaze, Jodi continued to work night shifts at Gifford and visit Hal in the hospital on her days off.

As of April 14, a GoFundMe for the Beebes had reached 89% of its $6,500 goal. 

The Beebes’ upstairs neighbor Lexus Wheatley and her three children lost almost everything in the blaze. They’ve since found new accommodation in Orange, Vt. and her kids have switched to Washington Village School.

“They really like the school,” Wheatley said.

As of Thursday, a GoFundMe for Wheatley and her children had reached 82% of its $7,500 goal.

Residents Janet and Chris Dow and their son were also displaced by the fire. Both Dow parents have limited mobility, and they were able to salvage their lift assist and medical chairs from the wreckage.

With the help of family and friends, the Dows have since moved into a mobile home in Barre.

A GoFundMe for the family has reached 84% of its $3,000 goal as of Thursday.

Meanwhile Jodi has been working on putting an inventory together of all the belongings she lost in the blaze. Her renters insurance policy will cover up to $18,000 of lost assets. But some things can’t be replaced — the bed Hal built for Jodi while he was working at Pompanoosuc Mills, or their dog.

The insurance policy will also pay the difference between the $1,200 in rent she paid a month at the Vershire apartment and what it costs to rent a new place. 

Jodi plans to stay in the couple’s RV when the weather gets warmer and then find a new place to live, she said. 

A few weeks ago her hotel room was crammed with belongings people had donated after the fire. Clothes were strewn across the back of an armchair and an episode of “South Park” played on the TV. The sounds of a familiar program helped her sleep while she was separated from Hal. 

A few days before Hal died, she visited him at the Jack Byrne Center. He was staying in the Lilac Room, which pleased her because purple was his favorite color. 

The lights were low inside and a fan blew a stream of cool air across the room. Sedated, Hal lay still under a blue quilt. His face was thinner and more angular than in the photos of him in family albums. 

Jodi asked a nurse to change the country music playing from a speaker. He “wasn’t a country person, so he’s thinking ‘turn this shit off,’ ” she said. 

Decades ago while they were dating, Hal started growing facial hair for the first time and Jodi taught him to shave using the skills she’d picked up working in health care. 

That day in the Byrne Center, she asked a nurse to bring her a shampoo cap and some towels so she could wash Hal’s hair. 

The room filled with the smell of florals as she massaged his head. “Do you feel this?” she asked softly. 

She brushed his hair with a plastic comb and placed a towel beneath his head, avoiding his face because “I know it’s rough,” she said. 

Hal died two days later with Alexis and Jessica by his side while Jodi was elsewhere. 

Intellectually, Jodi knows Hal’s death is “for the best” because he’s no longer suffering, she said, but she still misses him.

The loss has been “harder than I thought it would be,” she said a few days after he died.

Though Hal’s life has ended, the paperwork has not. As of this week, Jodi was still waiting for the state to find Hal disabled — the final step before he can qualify for long-term Medicaid. If he doesn’t get approved, she’ll have to file for personal bankruptcy, she said.

“I don’t know what the answer is in terms of Medicaid and taking care of our people, but the system sucks,” Jodi said in her hotel room a few weeks ago. 

“I seriously think it’s designed this way so that I will just give up,” she said. “That’s not going to happen.”