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A Family Caregiver’s Quest for Direction

Background

The precarious status of family caregivers has been given national recognition over the past decade. Health Affairs, the preeminent forum to promote analysis and discussion on improving health and health care published a study on the topic in 1999, which is still cited in academic and scientific literature to this day. “The Economic Value of Informal Caregiving” study broadened the issue of informal caregiving from the micro level, where individual caregivers attempt to cope with the stresses and responsibilities of caregiving, to the macro level of the health care system, challenging providers and policy makers to find more effective ways to support family caregivers.

A local community based organization,L’Orech Yomim/Center for Healthy Living initiated its “Caring for Our Elders” seminar series in 1999 and continues to advocate on behalf of this cause. It lead the first national Survey of Orthodox Jewish Caregiving (JOCS) in 2009, supporting the hypothesis that those feeling compelled to comply with the Fifth Commandment to honor parents typically experience greater burden in their role than the national average.

The concluding remarks of the just released June 2015, national survey are eerily familiar:

“Not enough is being done to support family caregivers in the public or private sector as they age.”

“There’s  a double-edged sword when we fail to support caregivers, because we put both  the

caregiver and the care recipient at risk.”

2015 Statistical highlights include:

•Approximately 34.2 million Americans have provided unpaid care to an adult age 50 or older in the prior 12 months.

•34% of caregivers have a full-time job, while 25% work part time. Caregivers who work do so for 34.7 hours per week on average.

•Caregivers have been caring for 4 years on average, spending 24.4 hours per week helping with activities like bathing, dressing, housework, and managing finances.

•Many are averaging 62.2 hours of care weekly.

•The higher-hour caregiver has been caregiving for an average of 5-1/2 years and expects to continue care for another 5 years.

•38% of caregivers report high emotional stress from the demands of caregiving

•Higher-hour caregivers report higher emotional stress, 46%.

The Caregivers Question

Our discussion will focus on an area of concern raised by a reader of this news magazine (see Letter to Editor) and assuredly contributes to emotional stress for many caregivers. The issue is how to monitor and improve the performance of a home attendant caring for a loved when the home care worker is not working directly for the family caregiver, but through an agency. With the popularization of managed long-term care models of service delivery this is has become a common circumstance.

Scope of the Issue

The solution is a complex matter. Firstly, a number of external environmental factors need to be considered:

–Those performing the home attendant role may have limited capability or education. –Recruiting and retaining quality personnel for the position is a challenge. –The home care agency may be under contract with a state agency or a managed care organization. Each has its prescribed functions and duties. –It is a bureaucracy with a chain of command, a hierarchy. –The home attendant role is defined by the parent agency. The Agency in turn may be required by law to limit duties. –There are insurance liability issues. –The worker is assigned chores he/she is permitted to do, and those that are inappropriate. –The family is assigned a case manager, a social worker or nurse, who develops a care plan and oversees the home attendant’s performance. –Each family is one of many on the case manager’s caseload.

In summary, it would be important to obtain a copy of the home attendant’s job description so that improvements being sought are within the agency’s acceptable parameters of the role, and that they are integrated in some measure with the care plan. Home attendant duties will also  be

  1. Communicate the Concern. It is very important to communicate and identify the area needing improvement. Family may be reluctant to do so because they don’t want to upset the paid caregiver since they’re caring for our loved ones and/or home. It becomes nonetheless imperative to address the issue and prevent the situation from worsening.
  2. Schedule Progress Reporting. Let the caregiver know how you’ll work together to follow-up and measure progress. For example, “Let’s touch base each Thursday afternoon when I get home to see how we are both feeling about progress.” Then be sure to make note of any examples of improvement or areas needing improvement so you can give both positive and constructive feedback during your follow-ups.
  3. Provide Feedback. Give your caregiver instant feedback (or even tokens of appreciation) when he/she has shown improvement in an area. Learn what motivates the home attendant and reward accordingly. Praise is a great motivator and can go a long way toward consistent, real improvement (and is a critical part of fostering a satisfied caregiver, in general).
  4.  Conduct Ongoing Multi-Component Monitoring. Use a combination of home-visiting, telephone follow- up, internet and telehealth technology to monitor and follow up.

The above plan for performance improvement applies equally to third party payers as well as to families paying directly for home attendant care. The complication is how to correct the problem if the home attendant is not responsive.

If the home Attendant Is not Responsive

If all this effort brings no results, a call to the case manager is warranted; if necessary, a change of agencies.

  1. Be prepared when making that call. Have notes with details available.
  2. Have a clear understanding of the home attendant’s duties.
  3. Make certain that the home environment is safe and clean.
  4. Realize that the home attendant may have already complained about you to the case manager.
  5. The worker may have a long work history with no prior complaints.
  6. The agency may have no replacement available.
  7. The case manager is not always present and observing in your home. It is not physically possible to do so and relies on performance history, employee’s explanation. It becomes your word against theirs.

Unfortunately, it can be a battle. Contacting outside resources for guidance and advocacy may be required. If feasible, engaging a professional Geriatric Care Manager (GCM) may become necessary.

The following title, while not yet reviewed by the author sets the tone of the job ahead and may prove an invaluable reference tool.

The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own Barg G.(editor) (2003), Capital Books, $15.95, ISBN:1931868565

With perseverance and stamina you will have a positive outcome (See Caregiver’s Forum, page 8 for a success story and additional pointers). I know of no instance where there was a direct reprisal or injury to a client due to a complaint. In reality you really have no choice. It’s your father, your mother. You can’t ignore the problem.

Conclusion

In conclusion, the family caregiver has a difficult task. Negotiating for entitlements, making visits, both planned and unplanned to see how your family member is doing, and speaking with staff at the agencies on a regular basis. These are all necessary to monitor the care being provided. And it can be lonely. Siblings may be unaware or uninterested. The parent may be passive, listless and subdued due to the change in health status and loss of independence. Being a responsible son or daughter despite the obstacles is what gives you character.

—RGB

Dear KHN Reader:

This review offers greater appreciation that your non-paid family caregiving is indeed a job; a difficult one. However, when you ultimately do find the right home care worker or reach the right balance with the existing one – how happy you will be! With luck and persistence you will find the right match. I’ve seen it happen multiple times.

The Editor

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