February 1, 2022

Every Caregiver’s Challenge is Unique

Caregivers for loved ones with dementia experience their duties in ways that are unique to the individuals they’re caring for.

Some wrestle with the behavioral issues of the people in their care, while others must balance caregiving and work or struggle to navigate the Medicaid system, line up day care, or track down a reliable in-home professional.

“There is no one way to care for a loved one who has dementia,” says Amy Goyer, caregiver and author of “Juggling Life, Work and Caregiving.”

Goyer feels that every caregiver’s perspective could be useful to someone else going through the same thing. She recently hosted a webinar that opened a window on the lives of three Pennsylvania caregivers – one for a father, one for a husband, and one for a partner’s mother.

The three women had a couple things in common, including the stress of shouldering the burden and the strain on their finances of paying for the all-day care that family members required, especially in the later stages of dementia.

But the similarities ended there. To understand the variety and depth of each person’s experience, there is no substitute for hearing directly from them in this webinar, which was sponsored by AARP, the Alzheimer’s Association, and the Pennsylvania Association of Area Agencies on Aging.

Here are snippets of their stories:

Robin Madison’s husband had Lewy body dementia, and Madison had four jobs: wife, mother, breadwinner, and caregiver. Her husband was 18 years older, and she was fully aware that she might one day have to take care of him. On the good days, he could be entertained by playing music on his tablet or watching television for hours. But he was often ill-tempered and difficult to manage.

Madison described her seven years of caregiving as a “battle” – a battle to get a diagnosis, to work at home while her husband roamed the house, and to secure consistent end-of-life caregivers for her husband, who died last year.

In the final months of his life, he was receiving in-home hospice, which proposed sending him to a facility close to home – for $10,000 a month. Should Madison pay that bill or pay for college for her son, Morgan? “I had to choose my son and his future,” she said. The pair shared caregiving duties.

Madison stressed that it was important to get something positive out of a very difficult time. Her son decided they should donate his father’s brain to science “to help somebody else,” she said. Madison is grateful to have emerged from the experience with a stronger bond with her son. “All we had was each other,” she said. Turns out that was a lot to have.

Diane Powell’s family could not afford professional care for her mother and father either. But one of the hardest things for Powell and her sister, who shared caregiving duties, came early in their father’s dementia, when they were “trying to figure out what is wrong.” Something was clearly amiss when her father, who owned a trucking company, would get lost on the road and couldn’t remember how to get home. A family member would figure out where he was and drive there to guide him home. …Learn More

April 15, 2021

First, Money Woes. 6 Years Later, Dementia

My 85-year-old mother is on top of her bills. She pays several of them online, which is impressive enough, and she knows which bill is due when.

So, we should both take some comfort in the fact that she is not having difficulty managing her money, which is an early sign of dementia.

The connection between poor money management and declining cognitive capacity was established in research years ago. An obvious next question – when does this early warning system kick in? – is answered in The Journal of the American Medical Association.

The researchers followed more than 81,000 men on Medicare for more than a decade and linked their medical records to their Equifax credit reports. The men who would eventually be diagnosed with Alzheimer’s disease or dementia started missing the due dates on their bills about six years before the diagnosis.

There are many reasons for the gap between signs of trouble and an actual diagnosis. If family don’t detect a decline in cognitive ability, they won’t ask a doctor to administer a dementia test. Family might confuse early-stage dementia with memory loss, which is a natural part of aging. One financial manager said some of her clients try to hide that they’re having trouble handling their finances – or “do not want to admit the problem to themselves.”

If dementia goes undiagnosed, the financial problems get worse. A second finding in the study was that about 2½ years prior to a dementia diagnosis, retirees’ credit scores were much more likely to slip to subprime levels, or below 620 points. …Learn More

January 7, 2021

Alzheimer’s: from Denial to Empowerment

First came the denial.

Jay Reinstein’s unwillingness to accept that he had early onset Alzheimer’s disease was equal in magnitude to the responsibilities he would have to give up as the assistant city manager of Fayetteville, North Carolina. He was afraid the people working for him would judge him.

But disclosing his condition to coworkers was unavoidable. After Reinstein, who is 59, was diagnosed in March 2018, his doctor made this very clear: “You’re in a visible position and making decisions. You’ve got to tell them.” With encouragement from a therapist, Reinstein informed his boss, and together they mapped out a plan for telling the city’s elected officials and employees.

His disclosure wouldn’t be all smooth sailing. As news of his situation spread through City Hall, he felt hurt by the rumblings of some employees who felt he should leave immediately. What surprised Reinstein, however, was a feeling of relief after initially disclosing his condition to his direct reports during lunch at a local restaurant. “I felt the love, and people really cared. That made me confident that I knew I could tell others,” he said.

Seven months after his diagnosis, he retired – and he hasn’t looked back. Today, his daily schedule rivals that of, well, a city official.

Reinstein, who is now living in Raleigh, North Carolina, hosts a call-in radio program on Tuesday mornings to discuss issues involving race with his African-American co-host, Kevin Brooks, on WIDU 99.7 FM and 1600 AM. He relishes the challenge of doing research to prepare and even finds it therapeutic.

He is also one of two people with Alzheimer’s disease on the national board of directors for the Alzheimer’s Association, a role that includes occasional interviews with major newspapers. As a board member, he gets involved in strategic planning – just as he did in local government. Prior to joining the board, he spoke around the country on the organization’s behalf to put a public face on the disease and reduce its stigma.

Being around positive people “gives me a feeling there’s hope,” he said. “My philosophy is, I like to keep my brain busy.”

Bobbi Matchar, director of the Duke Dementia Family Support Program, says Reinstein is defying the stereotypes associated with Alzheimer’s. “Jay shows the world that it’s possible to have a joyful and meaningful life after being diagnosed with dementia,” she said – “and he does so with warmth, dignity, and enthusiasm.” …Learn More

October 22, 2020

Cognitive Decline Meets COVID-19 Scams

The federal government warns that older Americans are being targeted by a battery of financial scams, including telemarketers offering to do contact tracing – for a fee – or to reserve a slot for a future vaccine. Others are soliciting donations to charities purportedly helping people in need during the economic slowdown.

COVID-19 makes this a perilous time for people struggling with cognitive decline.

Few can escape a deterioration in their cognitive capacity as they age. It’s just a matter of degree and speed. But the faster it happens, the more damage it can do, the FINRA Investor Education Foundation concluded in a new study.

The study was based on surveys of more than 1,000 older residents in Chicago retirement communities and subsidized housing – average age, 80. The same people were periodically asked questions with varying degrees of difficulty about their general financial knowledge and investments and were asked to compare and calculate percentages.

The older people who either initially had less understanding of financial concepts or experienced a faster decline in their knowledge made poorer financial decisions in exercises that simulated real-world decisions.

This included a vulnerability to scams, which was assessed by asking the older people to agree or disagree with statements like this: “If a telemarketer calls me, I usually listen to what they have to say.” (Not recommended.) And this: “If something sounds too good to be true, it usually is” (Count on it.)

To prevent scams, older people – and their caregivers – need to anticipate the financial damage that cognitive decline can cause. …Learn More