Wednesday, October 17, 2012

Caregiving: It Take a Village

When Mary received the diagnosis that her mother’s recent fall was due to a stroke, she knew she needed to step up to the plate. Knowing full well that her mother wanted to stay in her own home, both for long-term rehabilitation and into the future, Mary vowed that she would make it happen—as long as it was feasible.

Mary understands that her mother’s retirement funds are too limited to cover long-term care in an assisted living or skilled nursing facility. But since talking with the social worker, Mary understands that her mother could qualify for Medicaid if she “spends down” to meet the income requirements. Mary has figured out that her mother will require family assistance for at least two years before she can qualify for this government funding.

Unfortunately, Mary ran into the most common of stereotypes. Everyone in the family and medical system assumed that Mary, who is divorced, would take on the whole enchilada. This could necessitate 55-year-old Mary giving up her job and moving in with Mom, an unhappy prospect, because she would be sacrificing both salary and pension savings, as well as a job she loves.

Why is it that people continue to operate under the illusion that one caregiver can do it all? “Mary can handle it. She’ll just roll up her sleeves and get ‘er done.” This expectation often applies to a wife, daughter, daughter-in-law or even granddaughter, who are all expected to have some hidden gift for taking care of a now dependent and ill loved one. When the designated caregiver collapses under the weight of an impossible job, a “guilt trip” may be imposed and snap judgments made. She becomes “less than,” a failure at what she should naturally be doing.

We need an updated model for family caregiving. Let’s try the village concept—the “collaborative team builder” approach used in professional organizations. How would it look to you? How would it serve you to spread around the responsibility and the satisfaction of caregiving to a number of family members and even close friends?

Decide on a Family CEO. You begin with the decision maker, the family CEO, as it were. But this CEO is different. Rather than a top-down model, the collaborative approach relies on cooperation and negotiation. The CEO is mediator, conciliator, information center and coach.

Let the Coach Lead. The hands-on caregiver is actually in the best position to serve as coach—coordinating tasks and connecting the dots. Perhaps the person needs to grow into the role. But over time, let that person initiate the major decisions with the help of any family member who is willing and able: legal, medical, financial and institutional placement, among others. To keep the system going, the coach needs to add be able to motivate and encourage family members to continue relating to their loved one. Their love and attention calls for going beyond the medical crisis and being prepared for what could be a long road ahead.

Stay in Touch. Every decision must be made collaboratively. No surprises. The family CEO keeps the family informed and gets their input using the phone, Facebook, Twitter, e-mail or snail mail. No one person can make an irrevocable choice without consulting the whole team.

Assess Talents and Resources. Sort out other family members and figure out what talents or resources each can bring to the table. Be cautious about assignments. Simply because your brother is an accountant doesn’t necessarily mean he should take over dad’s financial matters.

Face the Facts. Many caregivers are confronted with the situation of the uncooperative relative. Bob refuses to visit his mother, to provide respite time or even to talk to her on the phone. He simply doesn’t want to deal with it. As unbelievable as this seems, it’s fairly common. Why not request this family member to contribute financially?

Two situations can complicate this picture: The distance factor and failure of family members to all sign on. Distance caregiving may require more time, costs and energy. It can be done, but not easily. Look for local social service professionals to help with the initial set-up, and then find a trustworthy person to keep you informed. Your regular visits keep everyone on their toes. Best of all, they provide your loved one with a gift —your presence.

When family members don’t step forward, you may need to turn to neighbors and others close to your family. Don’t limit your circle of care. You’d be amazed at how generous with time and devotion friends can be.

And, remember… To be an effective coach, you’ll need to make time to take care of yourself. You are the most critical player in this dynamic. Your good health, strength and courage will keep it all going.

1 comment:

  1. This is a great and important post and the village will include medical professionals and perhaps other outside assistance (esp. as you mentioned, if you are long-distance caregiving). I think some of the caregiver tools out there can be quite handy in this village approach too--when my Mom had a big surgery recently, CaringBridge was a godsend in terms of communicating with everyone, responding to requests to help (and putting out the call for help) and managing our time to focus on the immediate needs.

    In this vein, in my writing for I had put together some information on how families can "put together a care team", i.e. ways to make caregiving a team effort working towards the same goals when you are working with outside assistance: and Otherwise sometimes the help feels like more work! The family coach is invaluable in coaching/training/quality assurance when working with outside help. This is essential even when an elder moves to a care facility--the family role does not end by any means, but changes, and helping make that transition go as smoothly as possible is a big part of that advocacy.

    Thanks for a great article and a way to frame caregiving in today's world. The realities of today's families ("sandwiched", working, long-distance, possibly caring for more than one elder at a time) mean this is the way we NEED to think about things. And, isn't it interesting what assumptions people make (ie the divorced daughter will do it, I'll just move in with my kids, etc.--important to talk more about this stuff and think through the various scenarios, costs, etc.)?