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Out & About: Providing care for the caregivers

Valley News Staff Writer
Published: 7/27/2021 9:51:07 AM
Modified: 7/27/2021 9:51:07 AM

LEBANON — After her husband entered palliative care, Jen Hinson sat down with a social worker.

“During one of the visits I was asking ‘why are there no tools to identify when you have a caregiver in crisis?’ ” she recalled.

That’s when Hinson was connected with ConnectShareCare, a new online support group for caregivers and those who are going through bereavement. It involves researchers from Dartmouth College’s The Dartmouth Institute, medical staff from Dartmouth-Hitchcock Medical Center and caregivers themselves. Since it was launched earlier this year, the group has drawn around 45 members. While the project was in the works prior to the COVID-19 pandemic, it took on even more meaning in a world where people spent more time at home. The website features various message boards with topics including “Sources of Joy and Hope,” “Navigating the healthcare systems” and “Checking In – How are we all doing?”

“Sometimes you need to word-vomit … you need to talk about your fears,” said Hinson, of Allenstown, N.H., whose husband has stage four colon cancer and who lost her first husband to lung cancer over a decade ago. “This is the stuff you can’t necessarily say to your partner because it would affect them differently.”

People interested in joining the group do not need to be affiliated with DHMC or live in the Upper Valley, although resources are directed at people who live in the Twin States.

ConnectShareCare can be used on computers, tablets or cellphones. They can post anonymously, selecting usernames that disguise their real names. They can share as much or as little about their personal stories as they want to.

If people have more questions before signing up, they can email connectsharecare@dartmouth.edu. The group is aimed at adults 18 and older, but teenagers 13 and above can use the site with permission from their parents or guardians.

“With all the burdens of caregiving ... there’s probably something very nice (about) being able at 9 o’clock at night to log on when you have a moment to take a breath and see if there’s something there that can be helpful to you,” said Dr. Kathy Kirkland, chief of section of palliative care at DHMC who is a member of the group that created ConnectShareCare.

Physicians tend to focus their care most intently on the patient’s experience, “while the family member and the partners of the people who are experiencing serious illness are almost experiencing it as intensely as the patient” — albeit in a different way, Kirkland said, quoting what she learned in training: “The patient gets the diagnosis, but the family experiences the illness.”

A group started working on ConnectShareCare in 2019, said Beth O’Donnell, research project manager at the Coproduction Laboratory at The Dartmouth Institute for Health Policy & Clinical Practice, who moderates the group.

“We know that there are needs in our community,” O’Donnell said. “We know that active caregivers, people who are in it, in the trenches caring for someone with serious illness, have different needs than people in bereavement, but those needs can transcend.”

They researched programs like Mayo Clinic Connect, talked to hospice organizations in the region, did community surveys and listening sessions. They also brought in family members like Hinson and Janet Miller Haines, of New London, whose husband died in 2018.

“I’m finding it’s really very rewarding to help someone who is in a situation you were in and you are now no longer in it and you want to help someone else get through it, eliminate some of those surprises,” Haines said.

While Google searches might bring up immeasurable results, it lacks a personal connection. “You get answers nanoseconds later, but you don’t find someone who says ‘I have been there, I hear you, I suggest.’”

One feature of the site allows people to find others who are in similar caregiver situations either through the type of disease or type of relationship. They can message each other directly.

“We think that there’s a lot of benefits to being online. One of them is, especially, people are isolated because of their caregiving and can’t ...leave the person they’re caring for,” O’Donnell said. She also thinks it could be helpful for the “second tier,” such as people who are caring for the caregivers, like the neighbor across the street who wants to help but doesn’t know how.

One thing that can be a challenge for caregivers is taking care of themselves. As their loved one’s disease progresses, they might become more reluctant to address their own needs.

“What you’ll see in the groups is reminding caregivers and the bereaved to take care of themselves. Because if you don’t have a healthy caregiver then your patient is not likely to be very healthy,” Hinson said. “When you’re in this online support group we can say to each other ‘it’s really important to go to your doctor’s appointment. It’s really important for you to take even a five-minute walk. You have to take care of yourself.’”

O’Donnell also pointed out that, even if someone was able to attend an in-person support group, they might not feel comfortable sharing their story face-to-face.

“The objective is really to cope with the surprises that arrive post-diagnosis and in bereavement,” O’Donnell said. “It’s really like, as these surprises come up, as these needs come up, it’s tapping into people who share a lived experience and you can gain their knowledge and they can affirm the experience for you.”

The group is also trying to recruit former caregivers like Haines, who refers to herself as a care partner, but would be willing to share what they’ve learned about caregiving and bereavement along the way.

“It’s hard when you’re a care partner to take care of yourself. It seems kind of an all-consuming task and so an awful lot of the counsel that people give one another is how to take care of yourself,” Haines, 75, said. “That is a really major, major theme. Don’t lose yourself in this new role. Do make sure that you’re taking care of yourself in addition to the person you’re partnering with. That’s a critical, critical piece of all this.”

Liz Sauchelli can be reached at esauchelli@vnews.com or 603-727-3221.




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