Most families learn about respite the hard way, usually when the person doing the most care stops sleeping well, misses a call, or says they cannot do another night. The hospice benefit does include a planned break for family caregivers, but it sits apart from the visit schedule, and nobody will offer it unless you ask.
Local option: New Plan Care gives families in the St. Louis area in-home help so a parent can stay home: companionship, help with bathing and dressing, meals, and overnight care. Call (314) 405-0887.
How to tell you have the problem
You need a break when the care has no edges. Look back over the last seven days. If one person has been awake for every change, has driven to every appointment, and has answered every call, that person is carrying the week alone. Try to name the last full night you slept through and the last time you were out of the house for two hours or more without checking your phone. If you cannot name either one, the need is already here, whatever the visit schedule says.
Another sign is a list of tasks you would not trust anyone else to do that keeps growing. That list is normal in the first weeks. When it stops getting shorter, the plan has no room in it for anyone but you.
What the benefit covers
Medicare's hospice coverage rules include respite care, a short inpatient stay that gives the family caregiver time away. Each stay is limited to five days in a row, and it takes place in an inpatient setting rather than at home. Your hospice team arranges it. Ask the team to confirm in writing whether any cost falls on you for the stay, because charges can differ by setting and by your own coverage, and you should not learn about them at the discharge desk.
Respite is not the same as a few hours of help in the house. Ask separately what the hospice can arrange at home for a short stretch. That answer may be different, and you should hear it on its own terms.
Questions to ask before you call back
Ask the hospice social worker or case manager which facility the patient would go to, and whether the hospice has worked with that facility before. Ask how the five days are counted, and what happens if the stay ends early or the patient must return home and be admitted again. Ask who decides the start date and how much notice the facility needs. Ask what the facility will need from you on arrival, and confirm that the medicine list is prepared by you, the doctor and the pharmacist, since that work does not move to the facility staff or to anyone you hire for a few hours.
Ask who calls you if the patient's condition changes during the stay, and what number you should keep on your phone while you are away. Ask whether the patient's own clothing, glasses, hearing aids and comfort items can go with them, and whether a family member may stay with the patient during visiting hours.
Before the stay, check the place
Visit the facility before the day of the stay if you can. Note how far it is from your house, how the patient will get there and back, the visiting hours, and where you will park. A stay that is hard to reach for the people who love the patient becomes its own burden, and that is one more thing you do not need in the week.
When you are ready to ask
You do not need to explain the whole situation to the hospice. Say plainly that you have not had a break in a long time and that you want to know what respite looks like for this patient. Then write down the answer, the name of the person who gave it, and the next step. For a plain list of who to contact in the St. Louis area, see Local Help for Hospice Families.