This is the first story in a two-part series relating to the trials and tribulations of those in the sandwich generation. Check out next week’s Leader for the second segment. 

By Nate Jones

Staff Writer 

    It’s been called the “sandwich generation” and the “whopper generation” and it has nothing to do with fast food. The fact is more Mainers are finding themselves having to care for extended and immediate family members.

 “Nationally, 84 percent of long-term care is provided by family and friends, who spend a total of $306 billion a year,” Anne O’Sullivan, a family care specialist at the Southern Maine Agency on Aging (SMAA), said.

O’Sullivan said she believes an increasing number of people are faced with the challenge of caring for a senior while raising their own family due to the recent changes in family priorities and medical advances. 

The age range for people to have children has gotten much broader, as some couples are having children into their mid-30s, which was uncommon for older generations, she said. Seniors are also living much longer now by surviving strokes and other medical problems more often, creating a large window for generations to overlap. This results in what O’Sullivan called the “whopper generation;” people who take care of grandparents and grandchildren in addition to second generation family members.

“More people are surviving long enough to develop chronic illnesses, such as Alzheimer’s,” O’Sullivan said, “Once a person reaches age 90, they have a 50 percent chance of developing some sort of dementia.”

 O’Sullivan said she has experienced the stress of the “sandwich generation” first-hand, as her mother now lives independently with some help in Portland. She said luckily her parents had made several financial decisions in previous years that allows her mother to finance her own senior care.

“I have two kids heading to college, the timing could have been disastrous,” O’Sullivan said.

Len Kay, director of the University of Maine Center on Aging, the only interdisciplinary research center of its kind in the state, said “sandwich generation” caregivers are often faced with as much risk of sickness and injury as those they are caring for. One of the goals of the Center on Aging is to detect early warning signs of caregiver stress.

“When caregivers show signs of isolation; turning inward and not communicating, you can bet that they are at a greater risk of emotional harm,” Kay said.

Alcohol and drug abuse is also a telltale sign of “sandwich generation” stress, which can result in low immune system defenses, meaning more days off from work, which can in turn escalate the financial hardships during care-giving periods, Kay said. 

“Not all employers are family friendly,” O’Sullivan said. “Many caregivers have to go from full to part time work, which can mean sacrificing pensions or promotions.”

 According to a national study in November conducted by the Family Caregiver Alliance, Maine has one of the oldest populations in the country, ranking sixth with 189,800 seniors (14.4 percent of the state population) over the age of 65, all of whom will eventually need some level of elderly care as they grow older. The study found 154,000 Mainers spend 167 million hours and $1.68 billion providing for seniors. 

Kay said the “sandwich generation” is a fast growing issue, but nothing new.

“It has not been on the radar because the assumption was it was a traditional role. Caregivers have weathered the storm on their own,” he said.

Kay said many other countries have recognized the need to support caregivers long before the United States federal government, which is now beginning to assist programs such as the SMAA, which has received federal funding since 2000 to help assist “sandwich generation” caregivers who find themselves struggling to provide for seniors.

“They gave money to all 50 states, with very basic guidelines,” O’Sullivan said, noting the flexibility of the funds is key in helping agencies. “Aroostook and Cumberland County are not the same. We really have the flexibility to deal with specific areas and their needs.”

 “What [caregivers] need is a hand to hold,” Kay said. “You’ve got to remember to care for yourself too.” 

While it isn’t always easy to discuss what could happen down the road, communication between senior parents and their children can also help alleviate some of the stress on caregivers, O’Sullivan said. It is a conversation that can give the “sandwich generation” the comfort of knowing they are doing the right thing for their elders, she said.

“The idea is to get it on paper too,” O’Sullivan said. “The real nightmare situation is when the person being cared for can’t communicate and nobody knows what they want, or disagree about what it is they would want. It can prevent family disagreements and a lot of heartache.”

Involving children in the care giving process can also be a strategy to prevent overload, she said.

“Even small children can be present and included in the process,” she said.

O’Sullivan said there are lots of possibilities for “sandwich generation” adults to consider once outside help is needed. For care providers who do their homework there are in-home care options, assisted and independent living opportunities, and nursing homes possibilities for those who qualify.

William Hobbs of Scarborough, a 53-year-old FEMA agent depends on Comfort Keepers of Scarborough to help his 81-year-old father through their in-home care program while he travels around the globe to different disaster areas for his occupation. 

“I’ve had to make myself unavailable so I can take care of him,” he said.

Hobbs said he plans on placing his father in Comfort keeper’s care even after his father has undergone some major surgery.

“They’ve been great, we didn’t think he’d need that kind of thing at first, then it came to the point where he looks forward to having it,” Hobbs said. 

Sixty-year-old Ruth Conly’s mother, Jane Conly, who has developed advanced Alzheimer’s, has spent a year at Scarborough Terrace, an independent and assisted living facility. The Conly family made the difficult decision to sell a house in Portland the family had been living in for 40 years to help pay for her care. 

“I’m in a better place now,” said Conly, who has two children of her own.

In addition to being a single mother of two adolescents, 42-year-old Maria Wood of Scarborough lives with her 63-year-old mother, and made the decision to enroll her 86-year-old mother-in-law in the program at the South Portland Nursing Home, where she receives MaineCare and Medicare assistance.

“Financially, I couldn’t do it, not alone,” Wood said.