Assess Your Own Needs as a Family Long-Term Caregiver

If you are a family caregiver and manage or direct the care of an older adult who has a chronic illness or disability, you may be so overwhelmed with this responsibility that you lose sight of your own health and well-being. Your family member will be assessed by hospital staff, home care nurses, workers at community agencies, insurance companies, and more. But do any of these people ask about you — how you are managing, what you need for yourself, and what you need to watch out for?

If they do, count yourself lucky, and take advantage of their concern to ask where you can get the help you need.

But you don’t have to wait for a concerned doctor or nurse to start the conversation. There are several online tools that will help you get started. They are designed for different purposes so don’t just rely on one tool. Here are three examples.

American Medical Association questionnaire

The American Medical Association (AMA) created one of the most widely used tools, which can be found on the National Caregivers Library site. It has 18 questions, all starting with the phrase “During the past week or so, I have ….” The questions ask, for example, whether you felt lonely, felt a loss of privacy and/or personal time, been edgy or irritable, or had your sleep disturbed because of caring for your relative. A few questions ask about back pain (a common problem among caregivers) and whether you felt ill (headaches, stomach problems, common cold).

Not all the questions are about negative impacts; you will also be asked whether you felt useful and needed, and whether you are satisfied with the support from other family members. The questionnaire has a scoring system to help you determine whether your stress level is high. If it is, and that is probably the case, the AMA encourages you to see a doctor for a checkup for yourself and getting some relief from caregiving.

The tool also has a Spanish version.

Next step in care: “What do I need as a family caregiver?”

The AMA guide is useful for people in long-term caregiving situations when the person needing assistance is at home. The United Hospital Fund’s Next Step in Care guide, “What Do I Need as a Family Caregiver?” asks questions that are particularly appropriate when your family member is being discharged from a hospital or a short-term rehabilitation program. There may be new tasks to perform, new medications to integrate into the daily routine, and changes in your family member’s condition to monitor.

The tool is meant to be useful not only for you but also for the discharge planner. It asks, for example, whether you have health problems of your own that may make it difficult for you to carry out the care plan at home, whether you are taking care of other people, and whether you can call on other people to help. An important section lists several common caregiving tasks and asks whether you already do this or can do it, whether you could do it with some training, or whether you are unable, for whatever reason, to do it. A final section asks about your worries, which can be what you are concerned about that very day or for the long haul.

Sometimes professionals are not comfortable with caregiver self-assessments in these situations because they worry that they cannot fulfill unmet needs, or for other reasons. But you are the best judge of what you need.

The tool is available in English, Spanish, Chinese, and Russian.

VA caregiver self-assessment tool

As part of its Shared Decision Making program, VA has a self-assessment tool for the caregiver of a veteran needing long-term care. Although intended for that specific group, it is useful for all family caregivers. The tool takes you through a series of questions that help you review your role and responsibilities, evaluate your stress, and take action.

It incorporates some of the elements in the AMA and Next Step in Care guide in a simple, checklist format. Beyond common caregiving responsibilities, it asks about money management, coordination of appointments, and financial and emotional support. It also asks about your life beyond caregiving. In the stress evaluation, you can choose “I am doing well” or “I am struggling with this” in response to the various items, a nice way of avoiding yes/no answers, which don’t convey the complex emotions that you may feel.

The section that encourages you to take action focuses on VA services, but you can substitute community-based services. The main point is to use the results of your self-assessment to get the support you need. That is true whatever self-assessment tool you use.

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