The Future of Caregiving: A Community Caregiving Squad?

Denise

The Future of Caregiving: A Community Caregiving Squad?

Denise
helping handA few weeks ago, I shared an idea called a Family Care Manager, a designated family caregiver hired by the family to manage, oversee and provide care for the family unit. This week, I'm sharing an idea called a Community Care Caregiving Squad. (On February 7, I received a note that the term "Care Squad" is trademarked. So, we'll use "Caregiving Squad.")

The idea for a Community Caregiving Squad evolved over a period of time. About a year ago, I had an epiphany of sorts: Why not ask former family caregivers to volunteer to help today's family caregiver? And, then this last summer, I saw a need that inspired an idea for an army of former family caregivers—a Community Caregiving Squad—helping family caregivers in their communities.

One of our former members, Bette, cared for her mom, Margaret, until her mom's death this past July. Because I had offered to accompany Bette and her mom's body back to their hometown in Maine, I kept in touch with Bette daily during her mom's last week. Bette lives in central Pennsylvania; I live in Chicago.

Eight months previously, I suggested Hospice services for Margaret, giving Bette an opportunity to cement a helpful relationship with her mom's Hospice nurse and staff. Bette loved the nurse who stopped by weekly to check on her and Margaret.

Unfortunately, Margaret's last hours occurred over a weekend, which meant that Margaret's regular nurse was off duty and another nurse covered for her. Bette knew this nurse, having met her initially when Margaret began receiving Hospice services. Bette didn't like this particular nurse and didn't want this nurse to be with her as her mom died.

During Margaret's last hours, Bette opted to text a friend—a former family caregiver who cared for her mom at home until her death seven months earlier—rather than Hospice. On a Sunday morning in July, as her mom took her last breaths, her friend, Lisa, arrived to help Bette. After her mom passed, Lisa showed Bette how to give Margaret one last bath.

It was a final hour that only measures 60 minutes but tells a story of immeasurable support.

Which made me think: Wouldn't it be wonderful if every family caregiver had someone like Lisa? A Lisa who understood what happens at the end of life, who has an established relationship with the family caregiver and who can be a tremendous asset at the end?

As I thought about Lisa's role, I thought of a midwife, who might create a more informal relationship with an expectant mom, who shares helpful tips and advice and, more importantly, is easily accessible to that expectant mom. (My sister used a midwife for the birth of her three children. Her youngest was born at home with the help of a midwife.)

As I thought about this idea of the midwife at end of life, it occurred to me that a family caregiver needs someone like a midwife at the end just as much as he or she needs one at the beginning and in the middle. In essence, just as midwife supports and cares for an expectant mom prior to and during childbirth, a family caregiver needs help and support from when the caregiving experience first begins to beyond when it ends. (For more on my thoughts about the caregiving journey, read a concept I developed 15 years ago called The Caregiving Years, Six Stages to a Meaningful Journey.)

Consider the amazing resources and knowledge and expertise a family caregiver gains during caregiving. When caregiving ends, where does that family caregiver's knowledge and expertise go? We actually let those assets go. Instead of losing what can be such a gain to a family caregiver, why not capture the wisdom of former family caregivers to create an informal and volunteer-based organization called a Community Caregiving Squad?

Here's how it could work:

Former family caregivers bond together to support and help family caregivers in their community. These Caregiving Squad members live in the community, which means they have a pipeline to who's caring for who. I think of my mom, who belongs to several service organizations and social clubs in our community. She often hears about who's caring for who, information she passes along her social network. She's may not be on Twitter, but she's well-connected in her community's social network.

I envision a Caregiving Squad working off its informal networks to learn of family caregivers in the community. When a family caregiver is discovered, a member of the Caregiving Squad contacts the family caregiver, either directly or indirectly through shared contacts. The initial contact could look like this:

The Caregiving Squad member (CSM) calls the family caregiver, introduces him or herself and says, “I'm a volunteer who helps family caregivers. If you'd like, I can make a home visit with a team member. We can suggest resources, equipment and solutions which may help.”

If the family caregiver doesn't want a home visit, the CSM shares other information available: a monthly in-person support group, an online support group (hosted here on Caregiving.com) and telephone check-in tree through which CSMs make regular phone calls to family caregivers.

During the initial home visits, the CSM gathers information about the family caregiver and the caregiving situation. The visit is about the family caregiver—what he or she needs, worries about, struggles with. It's not about telling the family caregivers what to do—it's about offering options and sharing information so the family caregiver can make his or her best decisions.

CSMs make regular visits (perhaps twice a year) to check up on the family caregiver and to remind him or her about other support available (support group meetings, online support groups, a telephone check-in tree). The visits continue throughout the family caregiver's experience. The goal is to create a trusting relationship that a family caregiver can rely on. If the original CSM cannot continue, then a transition to another begins. It's why at least two CSMs would be assigned to each family caregiver. The team approach ensures support even when a team member changes.

It's like a ministry—a community-based operation connecting former family caregivers with current family caregivers. CSMs offer ideas and share information, knowing the family caregiver can use the information to make his or her best informed decision. And, CSM can be there during tough times, like a hospitalization. Perhaps a unit of CSM heads out to comfort family caregivers during a crisis, like a hospitalization or new diagnosis or recent decline.

The CSM also can tell a family caregiver the tips and tricks of the trade, so to speak. For instance, I suggested Bette contact Hospice for her mom—it wasn't the home care agency Bette used or Margaret's doctors. When Bette decided to use Hospice services, she contacted the primary care physician both she and Margaret used. Upon hearing about Hospice, the doctor told Bette, “You realize I can't do any more for you now.” This comment makes me as crazy today as it did when I first heard it. Of course, the doctor can still “do things” like make sure that Bette has the proper equipment, supplies and knowledge and that Margaret receives the proper care, especially pain management.

When Margaret began her dying process, I told Bette that Margaret was dying. I suggested that Bette have her children and husband spend time with Margaret and share their good-byes. With my prompting, Bette directly asked the Hospice staff if her mom was dying. The nurse demurred, saying, “We just can't know. This could be happening.” Of course it was happening—I knew it from hundreds of miles away without making an in-home visit.

A CSM can help a family caregiver by sharing the truths about caregiving that many health care professionals just don't or can't.

I like the idea of a Community Caregiving Squad because:

  1. It taps into existing knowledge that former family caregivers have about family dysfunction, the health care system maze, the common emotions of caregiving and the end-of-life process. A CSM knows. That's very comforting to a family caregiver.

  2. It doesn't require a large budget because it operates off volunteer time and Caregiving.com.

  3. It uses what we already have: CSM can use our groups to share updates, schedule visits. They also can create a separate group for family caregivers in their communities to connect and share.

  4. It's volunteer-based. Perhaps initially a CSM signs up for a one-year commitment, renewing that commitment every year afterward.

  5. It's an easy way to connect family caregiver to each other. The program introduces a family caregiver to former family caregivers and to other family caregivers in the community.

  6. The Caregiving Squad could become a buying cooperative, negotiating discounts and deals with local organizations, such as home health agencies and durable medical equipment suppliers.

  7. It allows a family caregiver time to get their “sea legs,” so to speak, after caregiving ends. They can take time to settle into life after caregiving and then become a volunteer. (You can read about the Godspeed Caregiver, described in The Caregiving Years, here.)

  8. A Caregiving Squad helps those who can later become volunteers. The Caregiving Squad has a natural feeder into its volunteer pool.


The concerns about the idea:

  1. Will there be enough volunteers?

  2. Will there be a volunteer who will want to take on the responsibility of managing the Caregiving Squad in the community? Managing the Caregiving Squad involves matching CSMs with family caregivers, managing the relationships and organizing meetings.

  3. Will there one volunteer who ends up doing it all, which could lead to burn-out and resentment? If this happens, the program could derail.

  4. Will volunteers remember to offer and share rather than tell and dictate? I really believe in the importance of sharing then stepping back. A controlling CSM (“I know best”) can be a toxin for the program.


What do you think? Would you want a Caregiving Squad to be a part of your caregiving experience? And, would you volunteer to be a member of a Caregiving Squad after caregiving ends? Please share your thoughs in our comments section, below.

(Would you like to stay posted on our Community Caregiving Squad idea? Join our Caregiving Squad group to stay informed and, perhaps, one day begin a Caregiving Squad in your community.)

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