The Future of Caregiving: A Designated Family Caregiver?

Jan 14 2013 in by Denise

designated-driver-300x300Last month, I interviewed Cali Williams Yost, author of Tweak It: Make What Matters to You Happen Every Day, for an article about managing a career and caregiving. During our phone conversation, Cali asked:

What do you think about the idea of a designated family caregiver? An individual in the family who’s paid by the family to provide care?

Cali’s comment came during a discussion about the future. Specifically, we wondered: In the coming years, how will we provide care for everyone in the family? Trends show that we’ll care for more than one family member at one time. (I see this trend already, as many of you who join the site care for more than one family member. Consider Renea, who cares for her grandmother, parents and husband.)

In a recent blog post, The ElderCare Cliff. It’s Coming Are You Ready?, Cali shares these statistics:

  • Today there are approximately 5.1 people between the ages of 16 and 64 to provide care for someone 65 and over AND to work to pay the taxes that support public programs for the aging.
  • In 2050, or 38 years from now, there will only be 2.9 people ages 16-64 years old to provide unpaid care for every person 65 and over AND to work to pay taxes to support public programs for the aging.

The stats point to a huge problem: In the future, we simply won’t have enough individuals to provide care for family members. We also won’t have enough individuals in the workforce to pay taxes to support programs like Medicare and Medicaid, which will be under greater strain as our popular ages and our country’s health declines. According to a 2012 study in the American Journal of Preventive Medicine, 42% of adults will be obese by 2030, creating a potential of $550 billion in health care spending between now and 2030.

It’s clear the solutions for the problem of providing care can’t come from our government or our health care industry; both systems spin on dysfunction.

Could the solution rest with the individual, like a designated family caregiver as Cali suggests?

So, let’s take a closer look at the idea of a designated family caregiver. Could it work? How would it work?

A designated family caregiver steps in when a family member needs care. And, this family caregiver will be prepared to provide, oversee and manage care. When the caregiving crisis hits because of old age, an injury or a diagnosis, the family turns to its solution already in place—the Family Care Manager.

And, because this Family Care Manager provides an invaluable service, the family unit pools its resources to reimburse the family caregiver for his or her time. The Family Care Manager becomes the recognized expert in the family, honing skills and expertise to provide the best care possible.

The role of Family Care Manager elevates the role of family caregiver; it’s now a career. Perhaps you work other jobs when you can (and you could when there’s a break between caregiving experiences) but your career is now caregiving. Because it’s your career, you take classes, become certified (as a certified nurses aide, for instance), pursue advanced courses that help with knowledge of medications, the health care system, death and dying, conflict meditation, effective communication techniques, the decision-making process and navigating family dynamics.

The duties and responsibilities of the Family Care Manager resemble the ones you perform now. Depending on the situation, the FCM might:

  • schedule and attend doctor appointments
  • order equipment and supplies
  • create a caregiving handbook of the caree’s care needs, preferences, routine and treatment
  • delegate responsibilities and tasks among the family
  • provide transportation to appointments and treatments
  • provide personal care
  • hire and oversee help for the caree and the caree’s home
  • manage the budget and pay the bills
  • capture the caree’s life story
  • find appropriate services and specialists
  • educate the family about the caree’s medical condition and needs
  • organize the caree’s social and faith-based activities
  • research treatments
  • organize and oversee family meetings to provide updates and discuss decisions
  • ensure a caree’s wishes are respected and put into place.

A Family Care Manager might move in with a caree to provide care. Or, if caring for more than one caree at a time, the FCM might oversee care where the caree resides, which includes long-term care facilities, such as a group home, assisted living or a skilled nursing facility.

Your career as a Family Care Manager means you run a small business, serving your family and other families in your community. If you have a small family (perhaps it was just you and your caree until your caree’s death), you can be hired by other families to be their Family Care Manager. In essence, your expertise gained during caregiving is preserved, benefiting your next carees.

As a Family Care Manager, your family (which includes immediate and extended family members, such as aunts, uncles, cousins), pays you for your services; you no longer sacrifice a financial future to provide care. (Long-term care insurance also could be a potential payer.) You no longer struggle with this question: How do I keep my job and continue in my caregiving role? With a recognized position in the family, you receive the respect of the role. It’s a professional position.

The position of Family Care Manager also has structure, such as paid time off and back-ups for time off and vacations. As the position of Family Care Manager becomes more recognized, you can work with other local Family Care Managers to cover for each other when you take vacations, enjoy weekly regular time off and if you become ill.

And, perhaps, you organize a coalition of Family Care Managers so that you can create you own benefits package which includes health insurance and a retirement plan. As a coalition, you also can leverage your buying power, creating a coop to purchase medical supplies, equipment and services at a discount. You meet regularly with other Family Care Managers to share resources, ideas and training. If a family member lives out-of-town, you coordinate care with a Family Care Manager in that community.

Because you have what you need (support, knowledge, training, benefits, regular breaks), your carees benefit, as well. You know doctors, hospitals and service providers. In essence, you know the system and how to work it. You know about programs which can help and have relationships with the staff who run them.

Because a family designates a Family Care Manager, family members may be more open to sharing their wishes, health conditions and treatments. The exchange of information and the creation important legal documents like a durable power of attorney for health care and finances could help the family better prepare for the future.

The Family Care Manager not only helps family members with current health care needs but also monitors the health of other family members. The Family Care Manager keeps track of the family’s medical information, becoming the recorder of annual check-ups, vaccinations, flu shots and medical histories.

In order for this to work, a family unit must:

  1. Protect the emotional well-being of the Family Care Manager. Caregiving is an emotionally-draining role. When a caregiving experience ends, the Family Care Manager will need time off. Appointing a back-up will be important as will creating relationships with other Family Care Managers in the community.
  2. Buy into the importance of a Family Care Manager, which may relate to the willingness to pay for the position (see below). A family unit also must understand that caregiving will happen, that it’s a natural cycle of life. A family unit in denial will not see the need for a Family Care Manager.
  3. Find the resources to pay the Family Care Managers. Can families afford this? Perhaps some families will pool monies to pay for a part-time FCM. The FCM also could work for other families or have other part-time jobs.
  4. Create a job description and a contract with the Family Care Manager which details job specifics. In addition, the family would have to add a performance review to ensure the FCM manages the responsibilities appropriately and effectively.

What do you think of the idea of a Family Care Manager? Would this work for you? How would your family react to such an idea? What benefits and obstacles do you see? Do you think a position like Family Care Manager would make the caregiving experience less lonely and less stressful? Please share your thoughts in our comments section, below. After you’ve shared your comments, please vote in our poll, Would You Take a Position as a Family Care Manager, here.

We’ll continue this conversation on Your Caregiving Journey on Wednesday, January 16, at 8 p.m. ET. Call 1-646-652-4944 during our show to share your ideas and join the chat room to discuss your thoughts with other family caregivers. Listen here.

Next week: I’ll share another idea which supports the family caregiver: A community care squad.

Resources
–Caregiving’s Cost: $3 Trillion in Lost Wages, Pension and Social Security Benefits
–$153,000,000 for 600,000?
–And, What Will You Do for Me?
–Your Value: $450 Billion

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