Routine hospice at home is a schedule of visits. A nurse comes on certain days. An aide may come for bathing on certain days. A social worker or chaplain comes when they can. Between those visits, the hours belong to the household. That is how the benefit is built, and a good hospice will describe it plainly if you ask. The trouble starts when the family has never counted those hours, and so nobody has noticed that they are empty.
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.
Write the week, not the visit list
Take one sheet of paper and draw seven days. Split each day into four blocks: 6 am to noon, noon to 6 pm, 6 pm to midnight, and midnight to 6 am. Mark every visit the hospice has scheduled in ink. Then, in pencil, mark every block where a person is physically in the house and awake enough to respond. Leave a block blank if no one is there. The blank blocks are the coverage gap, and they are usually the ones that matter most at night.
Do not fill in a block because someone is probably around. Fill it in only if you can name the person. If the answer is that you will be there, write your name, and then ask yourself whether you have slept a full night in the last week.
How to tell you have the gap
You do not need a clinical opinion to see it. These are facts you can observe in your own house:
You cannot say who is in the house between one and four in the morning on a given Tuesday. The number on the hospice call sheet gets answered by you, because you are the only one awake. The only person who knows the bathing routine, the transfer routine, or the order of the evening care is you. You have stopped leaving the house for more than a few hours, and you plan each outing around the next scheduled visit. A visit is described to you as coverage, but the other six days and the other sixteen hours of each day are still you.
If two or more of those are true, the plan is working as written and the household is carrying what the written plan does not include. That is a coverage problem, and it can be named and sized.
What to ask the hospice
Bring the marked sheet to the next visit or the next phone call. Ask the following, and write down the answers:
Which visits are on the current plan of care, and how often each one happens. Who answers the phone after hours, and whether that person can come to the house. What a continuous care period is, what triggers the hospice to start one, and how many hours of care it covers in a day. Ask the hospice to show you the written rule. Medicare's hospice rules set out four levels of care: routine home care, continuous home care for periods of crisis, inpatient respite, and general inpatient care. Continuous home care is meant for crisis periods, not as a standing schedule, so do not assume it fills a standing gap. Ask whether any hired personal care is covered by the hospice or is paid privately. Ask what the hospice does if a scheduled aide does not come.
If a hired non-medical caregiver is part of the answer, that person may give reminders and pick up prescriptions as an errand. Medicine itself, including who gives each dose and who keeps the list, stays with the family, the doctor, and the pharmacist. Confirm that in writing with the hospice so no one is surprised at two in the morning.
Compare the blank blocks
Once the blank blocks have names next to them, sort each one. Some can be filled by a family member who has agreed to a specific shift. Some belong to a hospice visit that can be added to the plan of care. Some will need a hired non-medical caregiver, paid privately or through a local program. Compare the options by the hours they cover, the person who must be reached when the shift is empty, and what happens when that person is unavailable. Do not compare on rate alone, because a cheap shift that fails on a Sunday night has not covered anything.
The Local Help for Hospice Families page lists the kinds of help that exist in west St. Louis County, and the Sources page shows where the rules described here come from.
The point of the sheet is not to solve the week tonight. It is to have one honest page to bring to the hospice, so the next conversation starts from the hours that are empty and not from memory at two in the morning.