WBUR

Workshops Explore How To Care For Aging Mom And Dad

Ellen Westheimer, left, and Kim Agricola discuss end-of-life issues during a Chronic Care Community Corps seminar in Newton. (Kirk Carapezza for WBUR)

Ellen Westheimer, left, and Kim Agricola discuss end-of-life issues during a Chronic Care Community Corps seminar in Newton. (Kirk Carapezza for WBUR)

BOSTON — If you have aging parents, maybe you’ve had the kind of realization that Jim Beimford recently had about his 82-year-old mother.

“I should have been in charge of my mom 18 months ago from a driving perspective,” Beimford says. “She was pulling U-turns on bridges, and red lights were just an optional thing.”

Because Beimford lives in Hopkinton and his mother lives in Ohio, that made things tricky when he realized he needed to take her car keys away. He says it wasn’t until an aunt called and said, “Jimmy, you’ve got to get your mother out of the car!” that he intervened.

Every single day, people all over the country get calls like that. “Mom caused a car accident.” “Dad had a stroke.” “One of them fell and broke a hip.” And because the fastest-growing part of our population is over the age of 85, those kinds of calls are going to become more and more frequent.

“If we don’t consider ourselves part of this, we’re setting our society up for an implosion where there’s not enough capacity to care for the elders in our society.”
– Ned Rimer,
Chronic Care Community Corps

“Everyone I know, because of the age I’m at, is dealing with this with their parents or their in-laws or a neighbor,” says 49-year-old Kim Agricola, who, along with Beimford, recently attended a workshop that’s teaching folks to be more prepared when that dreaded phone call comes for them.

“My mother had a terrible fall last year and it took my dad almost two weeks to get a home health aide in place because of the process,” recalls Agricola, who lives in Medfield. “Now, there are many people who have gone through this process that probably could have helped him make that happen in one day. There has to be a better way of communicating and not having to reinvent the wheel.”

A Newton nonprofit called the Chronic Care Community Corps, which runs this workshop, is trying to find that better way. It wants to use the experiences of people who’ve been through these crises to help others just starting to face them, and to train people to do more than just express sympathy or show up with a casserole when someone they know is coping with an aging friend or relative.

Because, as Agricola puts it: “We all want to live this long, full life and then just drop dead one day or not wake up, and it doesn’t work that way.”

One training technique at this workshop is role playing. The idea is that if people act out real-life scenarios, they can practice how to support each other as they care for the sick and the elderly.

In one role play, two workshop members act out the stress that can build up between siblings as they care for aging parents.

“My brother just won’t engage,” says one of the workshop actors. “I wish he’d do more.”

“Have you had a conversation with him about that at all? Like, have you been able to work out who’s doing what for mom?” asks the other actor.

“No, what happens is he calls and says, ‘Why haven’t you done the proxy stuff? Why haven’t you done this? Why haven’t you done that?’ ”

“You sound really frustrated.”

“I am.”

“Yeah, yeah, I hear you,” the other actor replies. Then, turning to the rest of the workshop members, she makes a confession: “I’m not sure where to go from here!”

A lot of people aren’t sure where to go from here when they encounter emotionally difficult situations like this. Yet this is the kind of family dynamic that comes up all the time when a parent starts to decline. That’s why Ned Rimer, the founder of the Chronic Care Community Corps, says practicing these conversations is so important.

“You can Google a tactical question like ‘How do you assess this nursing home versus that nursing home?’ ” he says, “but you don’t even know how to Google something like ‘struggling with my sisters around caring for mom.’ Yet it’s amazing how often when you ask someone what worries you the most, it’s not the illness. It’s something else that’s going on.”

But those questions will come up again and again as more of us care for our parents, spouses, family and friends coping with the problems that come with aging.

“Just look at the demographic trends,” Rimer adds. “If we don’t consider ourselves part of this, we’re setting our society up for an implosion where there’s not enough capacity to care for the elders in our society. Society and community has to get off the sideline and play a role in the future health care of our aging population.”

Rimer’s training workshop met twice last week and will meet again six months from now to check on the group’s progress. WBUR’s All Things Considered plans to track these workshop members as they put their training into practice — so stay tuned for future updates.

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  • Annie

    As a doctor, a daughter of aging parents, and a parent myself, I am so thankful to Chronic Care Community Corps for doing this important work. Keep it up!

  • DSN

    I felt that the story was missing what happens in the “middle.” The story begins by describing an aging parent that shouldn’t be driving anymore and then directly on how ‘end-of-life’ care is lacking. What about those that are dealing with parents that are somewhere in between?

  • wjskocpol

    My parents lived in Texas, while I live in Massachusetts and my brother lives in the Netherlands. We all were able to ignore our mother’s deteriorating memory because she was smart enough to cover it up as a visual problem, accounting for the big labels on things. Her condition wasn’t recognized as Alzheimer’s until she broke her hip and was in the hospital. The hospital put us in touch with a Geriatric Care Manager, a credentialed professional who prepped the house for her return, obtained daytime help, advised us on organizing finances and life-documents, took both my parents to medical appointments, and monitored the situation, keeping us informed. She stuck with us through the transition of my mother to a life-care facility associated with the hospital, her death, my father’s transition to assisted living (which he loved), and eventually his death.

    My parents had lived very modestly all their lives, contributed willingly of their time and talents to community organizations, and had accumulated enough resources (~$600,000) to pay for all this end of life transitional care. I report all this to 1) urge people to seek out the equivalent of a professional “Geriatric Care Manager”, 2) live modestly and accumulate resources, and 3) contribute willingly to Social Security and Medicare — which were a key component in the mixture of self reliance and community support that helped them live out their later lives in dignity.

  • Carolrl

    Isn’t it curious how much time we take to talk about social plans, college plans and vacation plans without discussing life care plans as we grow older. In my experience as a social worker who specializes in gerontology, when families plan and talk with their aging loved ones about future wishes and fears, their stress is lower, the care provided to the person in need of care is better and there are fewer family crises. Some elder care experts promote the 40/70 rule – by the time the child is 40 or the parent is 70 years old- as a guide to when to have the conversation. Families should turn to knowledgeable resources like the team of social workers at Care.com (www.care.com/scc) or workshops like the one hosted by the Chronic Care Community Corps to navigate the complexities of senior care and plan how to start and continue the difficult conversations with their parent and siblings. Speaking with an elder care expert can make a world of difference whether you have just begun to plan, have already had many conversations with your parent about their finances and wishes, or you just have questions and need someone who has expertise in the field!

    Sincerely,
    Carol

    • Dbarry

      Hi Carol — I have not heard of this 40/70 rule…but it makes great sense to have an agreed upon time to have such conversation, rather than to wait for a disaster…as most of us do. Having just participated in this seminar recently featured, I can say that it gave me a whole new lens to look at this issue — as well as new skills to help friends and colleagues. It really is building a new muscle. Since the seminar, I have learned of 3 friends who are struggling with care-giving dilemmas of aging relatives. I hope to be a better listener/supporter to them all…as well as to offer better tactical advice.
      The world would be a better place if more people knew how to help in these situations.
      Diane

  • Heather

    Chronic Community Corps is providing a really important role for our communities. If I understand correctly, during the seminars, the participants are trained to listen carefully and practice conversations. As family members and friends of family members, this is extremely valuable. I’m proud of this organization for spearheading these efforts which will only become more and more critical as the baby boomers get older.

  • Guest

    In Massachusetts, help is just one phone call away. We have 27 ASAP’s (Aging Services Access Points) that have information and referral services, elder care advisors, care managers, caregiver support, and other services to make caring for an elder family member easier. You can reach your local ASAP by calling 1-800-AGE-INFO.

  • Dr. Larry Weiss

    Good program. One resource you might try is http://www.theROYL.com for Rest Of Your Life planning.
    We all need to deal with death and have family conversations.
    Dr. L. Weiss 

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