Caregiver Burnout: The Signs, and What Home Health Can and Can't Take Off Your Plate

You're the one who knows where every pill bottle is. You sleep with one ear open. You've cancelled your own doctor's appointment twice because someone had to be home for the nurse.

I'm an occupational therapist, and I've worked in home health. On a lot of my visits the person I was most worried about wasn't my patient. It was the daughter, son or spouse standing in the kitchen doorway, running on fumes. This guide is for you.

Below, a rule means a federal regulation, and manual guidance means CMS's coverage manual. The signs of burnout come from named health organizations, in their words. Anything else is my own advice.

The Signs, in the Words of the People Who Study It

The National Institute on Aging calls them signs of caregiver stress. It says to watch out for:

• "Feeling exhausted, overwhelmed, or anxious"
• "Becoming easily angered or impatient"
• "Feeling lonely or disconnected from others"
• "Having trouble sleeping or not getting enough sleep"
• "Feeling sad or hopeless, or losing interest in activities you used to enjoy"
• "Having frequent headaches, pain, or other physical problems"
• "Not having enough time to exercise or prepare healthy food for yourself"
• "Skipping showers or other personal care tasks such as brushing your teeth"
• "Misusing alcohol or drugs, including prescription medications"

Cleveland Clinic uses the word burnout and defines it as "a state of physical, emotional and mental exhaustion that can happen when you dedicate time and energy to manage the health and safety of someone else." Its list overlaps with the one above and adds "Changes in appetite and/or weight," being "Unable to concentrate," and "Getting sick more often."

If your parent has dementia, the Alzheimer's Association lists 10 symptoms of caregiver stress: denial, anger, social withdrawal, anxiety, depression, exhaustion, sleeplessness, irritability, lack of concentration, and health problems. It says: "If you experience any of these signs of stress on a regular basis, make time to talk to your doctor."

Is there a quiz?

Not a scored one that I'd send you to. What the Alzheimer's Association offers is a "Caregiver stress check": five questions to think about or write in a journal. They ask whether you have time for things that fulfill you, whether you take care of your own health, how often you feel anger or anxiety, whether you worry about money and the future, and whether you have people to call.

What Home Health Can Take Off Your Plate

Home health is built around your parent. But the rules do look at you.

The agency has to ask about you

The comprehensive assessment must cover "The patient's primary caregiver(s), if any, and other available supports," including their "Willingness and ability to provide care" (42 CFR §484.55(c)(6)). That question is your opening. Answer it honestly.

You're allowed to say no to a task. CMS's manual says a patient who qualifies is covered "without regard to whether there is someone available to furnish the services" (MBPM ch. 7, §20.2). Its first example is a father who needs help bathing and with exercise, and a daughter who "is unwilling to bathe her elderly father and assist him with the exercise program." The manual's answer: "Home health aide services would be reasonable and necessary." Saying no doesn't create more hours, but it does count. Our guide to what home health does not cover explains the aide limits.

Training, so you aren't guessing

The agency must "Ensure that each patient, and his or her caregiver(s) where applicable, receive ongoing education and training provided by the HHA, as appropriate, regarding the care and services identified in the plan of care" (42 CFR §484.60(d)(5)).

Ongoing is the word I'd hold on to. If you missed the lesson, ask them to show you.

The medical social worker

Medicare's home health booklet says medical social services, ordered by a doctor or allowed provider, help with "social and emotional concerns that may interfere with your treatment or how quickly you recover." It says this "might include counseling or help finding resources in your community."

CMS's manual goes further (MBPM ch. 7, §50.3). Covered social work can include assessing "the patient's home situation, financial resources and availability of community resources," and "Appropriate action to obtain available community resources." It can also reach you, the caregiver, but narrowly. The manual covers social work with a family member "on a short-term basis" when "a brief intervention (that is, two or three visits)" is needed to remove "a clear and direct impediment" to the patient's treatment or recovery. The manual means the caregiver's "behavior or actions" must "plainly obstruct, contravene, or prevent" that treatment or recovery. General problems and long-term services for family members are not covered.

One of the manual's examples sounds like many families I've met. A wife caring for her husband with Alzheimer's "has not been giving the patient his medication correctly," and tells the nurse she is "feeling depressed and overwhelmed." The doctor orders a social work evaluation, and the social worker finds she is "so distraught over her situation that she cannot provide adequate care to the patient." The social worker "counsels the wife and assists her with referrals to a support group and her private physician for evaluation of her depression." The manual's verdict: "The services would be covered."

So the social work visit is for your parent's care. But when you are worn out enough that it affects that care, you are part of the picture. Our guide to who does what on the home health team covers the rest of the team.

What Home Health Can't Do

It can't give you a night off. Home health is part-time visits, and Medicare's home health booklet lists "24-hour-a-day care at home" among the things Medicare doesn't pay for. There is no respite service in the home health benefit.

The Medicare respite benefit I can point you to is in hospice. The rule defines respite care as "short-term inpatient care provided to the individual only when necessary to relieve the family members or other persons caring for the individual" (42 CFR §418.204(b)(1)). It "may not be reimbursed for more than five consecutive days at a time" (§418.204(b)(2)). Medicare.gov says you may pay 5% of the Medicare-approved amount "for inpatient respite care (short-term care to help give caregivers a rest)." Hospice is its own choice, for a different situation. Our guide to home health vs home care vs hospice explains the difference.

Families do arrange their own breaks alongside home health. The manual gives an example of a patient who hires a licensed practical nurse for nights while the family sleeps. It says that care, "as respite to the family members," has "no impact" on Medicare paying for home health (MBPM ch. 7, §20.2).

Where to Get Help Outside Home Health

Each of these numbers comes from the organization's own site.

A few details from those pages:

• The National Family Caregiver Support Program serves "Adult family members or other informal caregivers providing care to individuals 60 years of age and older," and caregivers of people of any age with Alzheimer's disease and related disorders.
• The Alzheimer's Association says its helpline "is a free service" and that "All conversations are confidential."
• The VA says its Program of General Caregiver Support Services is available to caregivers of veterans "enrolled in VA health care who served in any era."

Your parent also has the right to be told the names, addresses and phone numbers of the local Agency on Aging and Aging and Disability Resource Center, among others (42 CFR §484.50(c)(10)). Check the admission folder, or ask the agency for them.

What I'd Do, as an OT

This section is my advice from practice, not a rule.

Ask the therapist to train you on transfers. Getting your parent from bed to chair, on and off the toilet, in and out of the car. These are the moments family caregivers hurt their backs. I'd rather spend a whole visit teaching you than watch you lift wrong for six weeks. Ask to practice while the therapist watches, not just to see it done.

Use energy conservation on yourself. We teach it to patients with heart and lung disease. It works for you too. Sit to do what you can sit for. Keep the things you use most between waist and shoulder height. Do the hardest task when you have the most energy. And plan one thing a day that is only for you, even if it's 15 minutes.

Ask for the social worker by name. Families rarely know to ask. Ask the nurse whether the doctor can order a social work visit. If money, paperwork or your own exhaustion is getting in the way of your parent's care, say exactly that.

Say one clear sentence to the agency. Something like: I'm the main caregiver, I'm not coping, and I need you to put that in the assessment and the plan. Then name the specific thing: I can't do the night-time toileting, or I can't lift him. A vague I'm tired gets sympathy. A specific limit gets a plan.

Go to your own doctor. The National Institute on Aging and Cleveland Clinic both say to. Your health matters too.

Frequently Asked Questions

What are the signs of caregiver burnout?

The National Institute on Aging lists signs of caregiver stress that include feeling exhausted, overwhelmed or anxious, getting angry or impatient easily, trouble sleeping, feeling sad or hopeless, frequent headaches or pain, not having time to exercise or eat well, and skipping your own personal care. Cleveland Clinic's list of burnout symptoms adds pulling away from people, changes in appetite or weight, trouble concentrating and getting sick more often.

Does Medicare pay for respite care so I can get a break?

Not under the home health benefit. Home health is visits, and Medicare's home health booklet lists 24-hour-a-day care at home as something Medicare doesn't pay for. If your parent qualifies for hospice, which means a doctor certifies a life expectancy of 6 months or less, Medicare covers respite there: a short inpatient stay to relieve the family, for no more than five days in a row, and you may pay 5% of the Medicare-approved amount.

Can the home health social worker help me, the caregiver?

Sometimes. A doctor or allowed provider has to order medical social services, and they are for the patient's care. CMS's manual allows a short social work intervention with a family caregiver, two or three visits, when the caregiver's behavior or actions plainly get in the way of the patient's treatment or recovery. In one of the manual's own examples, an overwhelmed, depressed wife wasn't giving her husband his medicine correctly. She got counseling and referrals to a support group and her own doctor.

Is there a caregiver burnout quiz I can take?

The Alzheimer's Association has a caregiver stress check: five questions to think through or write about, on your free time, your own health, your feelings, money worries and your support network. It is not a scored test. If the answers worry you, talk to your own doctor.

Sources

• Taking Care of Yourself: Tips for Caregivers (National Institute on Aging)
• Caregiver Burnout (Cleveland Clinic)
• Caregiver Stress, including the caregiver stress check (Alzheimer's Association)
• 24/7 Helpline (Alzheimer's Association)
• 42 CFR §484.55, Comprehensive assessment of patients (Cornell LII)
• 42 CFR §484.60, Care planning, coordination of services, and quality of care (Cornell LII)
• 42 CFR §418.204, Hospice special coverage requirements (Cornell LII)
• Medicare Benefit Policy Manual, Chapter 7, Home Health Services, §§20.2 and 50.3 (CMS)
• Medicare & Home Health Care, CMS Product No. 10969 (Medicare.gov)
• Hospice care coverage (Medicare.gov)
• Eldercare Locator (Administration for Community Living)
• National Family Caregiver Support Program (Administration for Community Living)
• VA Caregiver Support Program (U.S. Department of Veterans Affairs)
• 988 Suicide & Crisis Lifeline