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.

Care Facilities: When One Size Doesn't Fit All

Going Back to the Drawing Board

You’ve finally convinced your mom to move into a care facility near your home, only to discover that the facility isn’t working out.  After all that work of moving her from Stamford, Connecticut to Seattle—days of packing, organizing and letting go of family treasures—you and Mom have reluctantly agreed that this isn’t the right place. You’re both exhausted, and don’t know what to do next.

Thousands of Americans find themselves in similar situations. You’ve placed your loved one in the “wrong” facility—great on the outside, but absolutely not a fit on the inside. Despite positive references from medical providers and even other caregivers, you can easily make the common mistake of assuming that one size fits all. 

What to do? I recommend going back to the beginning. First, locate a facility that has respite care until you can locate the best possible place. Then, sit down and review all your loved one’s needs—physical, mental, emotional and spiritual. Wound management? Wheelchair bound? Incontinent?  Dementia?  Food disorder? Easily upset? Late riser? Religiously oriented? Depression?  At the end of life? Identify as many markers as you can that will help you find just the right place for long-term care.

Now, begin your grand tour of a few facilities you’ve selected that appear to fit your loved one’s needs.  You’ll certainly want to interview a broad spectrum of staff at each facility: administrators, nurses, kitchen help, and anyone else who provides direct service to residents.  Use your senses—sight, sound smell, touch—and your intuition to detect the level, quality and quantity of care. Visit the facility at different times of the day. What kind of activities do they have?  If it looks strictly custodial—just a place to park an older person—move on. That won’t work for you. Try to tell the difference between staff efficiency and warmth; just getting the job done versus being committed to the residents.

Once you’ve made your decision, it’s wise to stick around and follow up for a few weeks to ensure that the care plan is actually being carried out. Don’t take “no” or “we’re too busy right now” for an answer. Let administrators and staff know that you’re part of the team, even if you can’t be there every day. Distance caregiving poses distinctive problems, but once you’ve done your homework and worked out any glitches, you can sit back and relax.

When Your Care Facility Fails to Care Enough

If you have serious complaints about the institution, and direct communication with the staff simply isn't working, don’t hesitate to contact an ombudsman. If a person faces immediate danger, such as abuse or neglect, including residents abusing each other, contact the police immediately. 

The Ombudsman Program today exists in all states under the authorization of the Older Americans Act, and steps in when communication with institutional staff has failed.  Ombusdmen advocate on behalf of long-term care residents of nursing homes, board and care homes, assisted living facilities and similar adult care facilities. They work to resolve problems of individual residents, and to bring about changes at the local, state and national levels that will improve residents’ care and quality of life.

Ombudsmen can do much to improve the living conditions of the elderly and ensure that they receive proper care. With the help of prompt and detailed complaints, ombudsmen can do their jobs effectively.

For more information about the Ombudsman Program, be sure to read this helpful post from Senior Care Corner.