Categorized | Family Care

Sandwich generation: Help for caregivers caught in middle

portrait of a grandmother; mother and daughter family caregiver

The mother of two is the prototypical sandwich generation caregiver who had to burn the wick at both ends to keep her family afloat.

 

 

 

By David Singer

WASHINGTON, Pa. — Donald Patterson lived in hospice care for months until his death following a catastrophic stroke that left him bedridden. His wife, Carol, started a caregivers’ support group on Facebook two years ago in June.

The online group proved so helpful that Washington Health System invited her to bring the program to WHS-Greene hospital in Waynesburg.

“I was just in the midst of it all. I didn’t know what to expect, where to go, and here I was selling the farm and three vehicles so I could better take care of him,” said Patterson, 74, of Waynesburg.

“I had been part of online groups, but there wasn’t anything in Greene County to meet in person and vent and open up about what you’re going through and how to help yourself and others,” Patterson said.

Virtual or Real Help

Patterson and two other women are encouraging those who feel stuck caring for sick or elderly parents or spouses to reach out for help through family, friends and meeting groups — virtual or real. Patterson’s group meets at the hospital every third Wednesday at 7 p.m.

“It’s a confidential environment. We give information on finances, counselors’ advice, how to deal with long-term care or a sudden change in care. But more than anything, it’s often people coming here in a panic. They realize they’re just entering a new style of life being a caregiver. It’s a dramatic change,” Patterson said.

Such was the change for Pamela Fawcett of Washington.

“My father, Alan, was diagnosed with brain cancer in December 2015. I was not caring for him until he became ill. He wasn’t symptomatic until we were returning home one day and I called him later and he wouldn’t pick up the phone for hours. I drove over to his place in Eighty Four and he was saying he was coming home from Cranberry. It was all nonsense, him speaking in the third person. I thought he had a stroke; he thought I was his wife, not his daughter,” said Fawcett.

The 31-year-old mother of two is the prototypical sandwich generation caregiver who had to burn the wick at both ends to keep her family afloat. As it turned out, her father would be in her care for just a year.

“He had surgery that removed 80 percent of his brain tumor, but even with that success, there was no expectation of time. You’re diagnosed and you could be gone the next day, week or, as with my dad, about a year later,” Fawcett said.

The turmoil she was thrust into sorting out her dad’s mental state, as well as explaining his illness in muted terms to her 4- and 10-year-old children, had her seeking refuge online.

“I joined a couple of Facebook groups for glioblastoma multiforme brain cancer, which is what he had. It was kind of a road map for what to expect and how to react to it,” Fawcett said.

Fawcett said she’s glad her dad isn’t in pain anymore. She still eulogizes him occasionally on his Facebook page, an ongoing memorial to his life as a Navy veteran and grandfather.

“He and I share a birthday on Aug. 14. So that day was really hard for me for the first time this year. It’s going to be hard every year. But he’s in my heart and in my mind. And seeing my kids makes it easier,” Fawcett said.

Donald died at 80, Alan at 54. Others are seeing family members live well beyond median life expectancies. And they’re not making it just through the help of online or group meet-ups, but also old-fashioned family grit and community compassion.

A Triple Decker Sandwich

“I’m a triple-decker, if you’re talking sandwich generation caregivers,” said Anita Welshans, 59, of Hanover Township, who also has two sons, two grandchildren and two sisters, one of whom, Sandy, 74, also helps take care of their 94-year-old mother, Mary.

Welshans lives across the street from the doublewide mobile home her sister secured for their mother nearly two decades ago so she wouldn’t have to clamber up three stories. Welshans found out the generosity of her mother’s church community, Paris Presbyterian Church, was also crucial to her comfort. Congregation members installed a ramp at the front of the home so Mary could enter with ease.

Welshans has unique experience and family dynamics that lend the sisterly duo a leg up to take care of mom.

“My sister was a Marine. She takes care of all the medicine and the regimented scheduling and things like that. And I was an at-home caregiver for 25 years,” Welshans said.

It also helps that their mom is a relatively independent woman for her age. She’s unsupervised through the morning until 11 a.m. And her beverages sync up with the day. She starts with black coffee with a wedge of butter before moving to a different buttery flavor — at least two glasses of chardonnay, every day — before moving into afternoon black tea with cream and sugar.

“There are great, happy days and there are sad, bad days, no matter who you take care of,” Welshans said.

Routine a Saving Grace

For Welshans, routines are a saving grace. For Fawcett, routine was a reminder of the brutal reality she was facing: Her dad was no longer the person she remembered.

“The most frustrating thing was going back and forth in time, as well as the trips to the hospitals and rehab facilities,” Fawcett said, “and I just kept telling myself that he’s a fighter and he’s going to make it through. I was hopeful despite his diagnosis.”

For Fawcett and Patterson, the change from attentive caregiver to grieving mourner was just as sudden, and even more unexpected.

“The aftermath is almost worse than the stress of looking after someone,” said Rachelle Kamenos, the nurse who cared for Donald Patterson in hospice, “because you have people coming over all the time, or a meeting to go to, or people asking about you. Then it just disappears. That’s when it hits a lot of people. And it’s even more important to reach out then, because you’re going from caregiver to finally taking care of yourself.”

Kamenos said the final stages to move into hospice can be the most stressful of all.

“Preparations can be very taxing, almost literally. If someone has had substantial retirement savings from income, they’re often ineligible (for financial help) from the state,” Kamenos said.

Fawcett said she leaned heavily on the caregiver and medical support groups, but she can’t bring herself to go to meetings for those who have lost family to cancer.

“You can’t just sit with your grief and stress. But I have other outlets, and I have my kids. And I can always look at his page online,” Fawcett said.

Getting Help

The statistics and challenges:

✔ 4 in 10 adults in the U.S. care for a child or adult that has significant health issues.

✔ The number of caregivers increased by 10 percent from 2010 to 2013, and they average between 30 and 64 years old.

✔ 6 in 10 adults said they would prefer to stay in their home if they no longer could live independently, according to a 2014 Pew Research study.

Some Expert Advice:

Camille Koonce, a certified aging life care expert, gave an online seminar through Washington Health System. Here are some of her tips:

✔ Set management and schedules for money, medication organization and scheduling, shopping, meal preparation and use of telecommunication devices.

✔ Up to 70 percent of family caregivers suffer from clinical depression because of or concurrently with caregiving duties. Create your own support network of family and friends and seek outside help.

✔ Pick “battles,” prioritizing health and safety issues. Avoid “you never” and “you always” when discussing prioritization of tasks. Caregivers should be aware of their own emotional triggers and be prepared to deal with them or set them aside. — AP

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