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By Thomas Goldsmith

Cislyn Ricketts, 88, a retired radiology technician, had problems at first with wearing adult incontinence products.

But she adapted, as the kinds of products and their use became more familiar. Her daughter and caregiver Carrie Taye, 72, says use of adult diapers and related items help to manage one of Ricketts’ many health problems, including symptoms of dementia.

“Being a proud person, you become resentful of that kind of dependency,” Taye said during an interview from the pair’s East Raleigh home.

Now Ricketts welcomes her Depends. For Taye, needed relief from a specific worry arrives each month with adult incontinence products from a Resources for Seniors program paid for with federal dollars.

“It’s very personal,” said Heather Burkhardt, project manager at Resources for Seniors, a nonprofit agency in Raleigh that deals with older people’s needs.

“There’s a lot of concern about dignity and respect. To be an adult and talk about these situations it’s very personal, but it’s also very empowering.”

“A big portion”

A month’s supply of adult diapers can easily cost $100, approaching the monthly cost of a Medicare supplement or even the property tax on a modest family home.

But despite the ongoing cost, investing in adult incontinence products can be a money-saver over time. Research points to incontinence as a chief reason that people wind up in long-term care.

The products are one of the many life items that may be out of reach for the residents of North Carolina’s adult-care homes who receive $66 in total spending money each month.

“When you are on a fixed income, that is a big portion of your income,” said Michelle Old, founder of the Durham-based North Carolina Diaper Bank. “Many seniors are not willing to disclose this need. And many community organizations aren’t asking whether seniors need them.”

State legislators have introduced bills that would increase spending money for adult care and nursing home residents.

Perhaps because of discomfort felt by people who don’t need or encounter adult diapers, the products generally get little support from the government or nonprofit sector. North Carolina’s Medicaid program mandates prior approval in order to receive the products and only pays for adult products if medically necessary.

“Incontinence supplies (for example diapers) are only covered for beneficiaries three years of age and older who are incontinent due to disease, illness or injury,” reads the relevant language in a state Medicaid manual.

A 2014 report by the federal Office of the Inspector General told states to seek savings in disposable incontinence supplies through competitive bidding.

Four million diapers

“We know incontinence and poor nutrition are significant risk factors for institutional placement,” Burkhardt said.

The nonprofit NC Diaper Bank works to fill an unmet need for adult incontinence products, an item that can strain the budgets of people with limited incomes. Thousands line the shelves of the agency’s Durham warehouse. Photo credit: Thomas Goldsmith

According to an annual survey, the monthly cost for a skilled nursing facility in North Carolina runs up to  $7,000 per month, while the cost for assisted living is about $3,700 per month.

“We hope by providing some economic relief to caregivers for the cost of products we are supporting caregivers and delaying institutional care,” she said.

Support for supplying incontinence products is coming from the grassroots level. Armed with personal experience with a sick child, Michelle Old decided to move forward when others wouldn’t.

“I started the Diaper Bank in 2013 from my kitchen table,” Old said during a phone interview.

“Last year we distributed four million diapers statewide.”

Funded by individual and corporate donations, NC Diaper Bank works with nonprofit agencies across the state to distribute diapers for children, menstrual period supplies, and adult incontinence products to families living in poverty.

“If someone is struggling for these items, they are struggling in many ways,” Old said.

Why it happens

Researchers say fecal incontinence has three basic types: passive, or involuntary and not noticed; urge incontinence, or discharge while trying to retain waste; and seepage. It’s not a disease, but a “common final pathway symptom” with many different causes. Urinary incontinence follows a similar pattern.

Among dozens of potential causes of fecal incontinence are dementia, obstetric injury, psychiatric or neurological issues, constipation and fecal impaction, spina bifida, and inflammatory bowel disease. With urinary incontinence, underlying physical conditions can be to blame, along with changes resulting from pregnancy and childbirth, age-related muscular changes, menopause, hysterectomy, enlarged prostate or the effects of neurological disease.

Scholars Nallely Saldana Ruiz and Andreas M. Kaiser gave an overview of the symptoms of fecal incontinence in a 2017 article in the World Journal of Gastroenterology.

“Most importantly, there is a significant impact on the quality of life (self-esteem, embarrassment, shame, depression, need to organize life around easy access to bathroom, avoidance of enjoyable activities, etc.)” they wrote. “Notably, this aspect is not limited to the patient but could to a similar degree affect the patient’s significant other.”

Distributing dignity

In Burlington, Alamance Eldercare often receives calls from people who need supplies that will make their lives more supportable. Laura Regan, program director, and Tammy McKee, care manager for the Family Caregiver Support Program, have set up a protocol through which a person can receive 30 pull-ups or diapers per month.

Jannice Verne is community coordinator at NC Diaper Bank in Durham. She and others use the forklift and any other means needed to send out four million diapers annually, hundreds of thousands of them for adults experiencing incontinence. Photo credit: Thomas Goldsmith

Regan has noticed occasional reluctance among older people in adjusting to using them, usually followed by acceptance once use is established.

“For the most part, the people we come across are very eager and happy to get these supplies,” she said.

At the NC Diaper Bank warehouse in Durham, community coordinator Jannice Verne does physical work as well as dealing with administrative tasks.

“We all do it — we drive a truck if we have to,” Verne said.

With hundreds of thousands of adult and infant products stacked on metal shelves, the site offers hard evidence of the ongoing community need. More than 400 volunteers help out each year.

“We’re small but mighty,” Verne said of the five-person staff. “Our mission is distributing dignity.”

Burkhardt, at Resources for Seniors, said the agency realized there were few resources for incontinence products for people who still live in the community. They decided to retool their use of federally funded caregiver support dollars to pay for incontinence supplies and nutrition, with about $14,000 this year going to help caregivers who had been paying out of pocket.

“I order the product of their choosing within reason,” Burkhardt said. “It’s not designed to be an ongoing support. It’s about a $200 benefit in product. We want to be able to show caregivers that we support them. We want to make their lives easier.”

Handling the reality and issues surrounding adult incontinence requires effort by all parties. Carrie Taye, looking after her mother in East Raleigh, talked over the noise of home renovation about the adjustments they’ve had to make.

“She likes the product now, I get her the ones that are more like panties,” Taye said. “She doesn’t feel like she is wearing something weird.

“Any kind of assistance you get at this point is so helpful, it’s like a godsend.”

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Thomas Goldsmith

Thomas Goldsmith worked in daily newspapers for 33 years before joining North Carolina Health News. Goldsmith is a native Tar Heel who attended the UNC-Chapel Hill, and worked at newspapers in Tennessee...