Burned Out Daughter / The break
How do I get a break from caring for my mom? The first four hours off, where they come from, and what to do with them
Respite is a word that sounds like a brochure. This page treats it as a booking: four doors it can come through, the phone numbers on each one, and one rule for the first block.
hours, with four of them off. The first four are for sleep.
"How do I get a break from caring for my mom" usually gets answered with a word: respite. The word is not the answer. A booking is: somebody else in the house at a fixed time while she is still cared for, and you somewhere else for a block of hours with a start and an end. This page is the four doors that block can come through in the St. Louis metro, the number on each, and one rule for the first block.
Respite, in the government's words
The National Institute on Aging defines it plainly: respite care provides short-term relief for primary caregivers and may last anywhere from a few hours to several weeks at a time, at home, in a health care facility, or at an adult day care center. A few hours counts. You do not have to earn a week away before you are allowed an afternoon.
The same page is honest about money: respite from a friend, relative or volunteer may have no cost, professional services charge by the hour or by the day, and most private health insurance plans do not cover it.
Door one: Aging Ahead, if you live in the county
Aging Ahead is the Area Agency on Aging that has provided supportive services in St. Louis, St. Charles, Franklin, and Jefferson counties since 1973 for adults 60 and older. Its Family Caregiver Support Program says that opportunities for support to unpaid caregivers may include, as funding permits, in-home respite, adult day services, durable medical equipment, minor home safety modifications, and incontinence and nutritional supplies, and it tells you to reach its Community Options Specialists at (636) 207-0847. "As funding permits" is their phrase: ask what is available now, not just what exists on paper. The program has its own page here.
If she lives inside the city limits, the door is the St. Louis Area Agency on Aging, which covers older adults living inside the city limits and answers at (314) 612-5918. Anywhere else in Missouri, the Missouri Senior Resource Line at 1-800-235-5503 connects callers to their local Area Agency on Aging after they enter a ZIP code.
Door two: the VA, if she served
If your mother is a veteran enrolled in VA health care, the VA runs a respite program and describes it without fuss: Respite Care is a program that pays for care for a short time when family caregivers need a break, need to run errands, or need to go out of town for a few days. Its home version pays for a person to come to a Veteran's home, or for the Veteran to attend an adult day health care program, while the family caregiver takes a break. Eligibility depends on clinical criteria and local availability; a copay may be charged. The way in is the VA social worker or case manager, and VA Form 10-10EC, the Application for Extended Care Services.
If you do not know where to start, the VA Caregiver Support Line is 1-855-260-3274, Monday through Friday, 8 a.m. to 8 p.m. Eastern. Say "my mother is a veteran, I am her caregiver, and I need respite."
Door three: hospice respite, if she is on hospice
If your mother is already receiving hospice care, there is a specific Medicare benefit for you, not for her. The NIA describes it: for a person receiving hospice care, Medicare will cover most of the cost for up to five consecutive days of respite care in a hospital or skilled nursing facility. Medicare's own hospice page puts the cost share at 5% of the Medicare-approved amount for inpatient respite care. Ask the hospice nurse about it by name: inpatient respite. Whether it fits is the hospice team's call and the physician's. For the rest of what caring for a parent on hospice at home involves, our sister desk Hospice at Home Help is written for exactly that week.
What if I cannot do another night?
The three doors above take applications and waiting. Overnight respite, when the sentence is "I cannot do another night with mom," usually comes through the fourth door, because that door opens this week. Missouri's health department describes the private-pay category of care at home in its own words: private duty or private pay, funded by private money or insurance, with no physician order needed for aide personal care, respite, or companion care, and no license issued in Missouri for that type of company. You can buy four hours, or a night, of a non-medical caregiver in the house this week, without a referral. Overnight is still respite. It is a shift change, not a vacation.
The Family Caregiver Alliance's advice on hiring is worth taking at face value: if you need help right away, always go through an agency, as hiring privately takes time and energy to secure the right person. One such company in the metro is New Plan Care, an independently owned non-medical in-home care company in Chesterfield that serves the eight towns listed at the bottom of this page; it is a paid placement on this site and is labelled as one below. Call any company, ask for a fixed block on a fixed day, and ask the rate on the phone. This site does not print rates.
A fifth door if the diagnosis is dementia
Missouri runs a separate program for caregivers of people living with dementia. The Missouri Caregiver Program supports caregivers of persons with Alzheimer's disease and related dementias across Missouri through education, respite care relief and assistive technology, and is administered through a contract with Community Asset Builders at (573) 415-7343. If a clinician has made that diagnosis, this door is yours too.
What do I do with the first four hours?
Sleep. Not errands, not the pharmacy, not the sibling call you have been avoiding. The Alzheimer's Association's description of respite is that it gives caregivers a temporary rest from caregiving, while the person living with dementia continues to receive care in a safe environment. The first block exists to prove to your body that the house can run without you for four hours. The first is for sleep, door shut, phone across the room.
What if she will not have a stranger in the house?
Every family hears this. The Family Caregiver Alliance's answer is to tell the person that you need help, and that accepting hired care is something they can do to help you, not a sign you are going to abandon them. Its hiring guide adds that it will be important for you to be present at first so the attendant and your mother can establish a relationship, and that if you feel uncomfortable with the person an agency sends, you can ask the agency for someone else. Be home for the first visit. Leave for the second.
What to do tonight
- Write down which doors apply: county or city address, veteran or not, hospice or not, dementia diagnosis or not. That tells you which two numbers to call tomorrow.
- Pick the block: a day of the week and four hours, the same four every week. Write it on the calendar before anyone has agreed to fill it.
- If it has to be this week, the private door is the only one that opens in days. Decide that tonight.
- Tell one person the block exists. Someone who will ask you next week whether you slept.
When to ask the care team or the doctor
Respite of the kind on this page is non-medical: a person in the house for routine, meals, companionship and supervision. If your mother needs a nurse during those hours, that is a different category. Medicare's home health benefit requires part-time or intermittent skilled services and that the person be homebound, and it is ordered through her doctor, so ask the care team whether home health is part of her plan before you assume a companion is enough. If she is on hospice, the hospice nurse decides what inpatient respite would mean for her care. Nothing on this page changes a dose, a diagnosis or a care plan, and it should not.