Most families price a home hospice plan by the bills they can see: the agency invoice, the pharmacy receipt, the equipment delivery. The cost that rarely makes the list does not arrive as a bill at all. It is the hours you are not at work, the shifts you trade, and the days you cannot take.

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.

Log the hours the house takes

For one ordinary week, write down every block of time you spend on the person at home that no hospice visit covers. Include the nights you are awake, the phone calls, the wait for a delivery window, and the drive to pick up a prescription. Hospice visits happen on a schedule. The rest falls to whoever is awake and available, and that is usually one person.

Then hold the log against your work schedule. Mark which hours fall inside your paid day. That marked list is the real number you are comparing against any hired help.

Ask your employer the leave questions now

Put these questions to human resources in writing, before you need the answers:

Is the employer covered by the federal Family and Medical Leave Act? Do you meet its eligibility rules for length of employment and hours worked? Does the leave cover caring for a parent with a serious health condition? Can you take it in blocks, or as a reduced schedule, rather than all at once? Is the leave unpaid, or does the company offer paid leave or a caregiver policy you can use alongside it?

Under the federal rule, eligible employees in covered workplaces may take up to 12 workweeks of unpaid, job-protected leave in a 12-month period. It protects your job. It does not pay your wages. Missouri and the employer may add their own rules, so ask for those in writing too. For the basic terms, the Sources page lists where to read the rules directly.

Set the two columns side by side

Hired help has a cost per hour. Your absence from work has a cost too, and it is often larger than it looks. Lost wages are only the first part. Also count any retirement contributions you stop, any health insurance premium you may need to carry on your own if your hours or coverage change, and the risk of losing the job or a promotion while you are out.

The cheapest hour on paper is not always the cheapest hour in the household. Two columns, one for hours you can hire out and one for hours that must stay with you, will show you where the money is actually going.

Check your own budget at reduced hours

  • Whether your paycheck still covers the household bills if you drop to part time
  • Which benefits continue if your hours change, and who must sign the paperwork to keep them
  • Whether any work can be done from home during the quiet hours at night
  • Which other family members can cover a fixed block each week, and whether they have the same job limits you do

Ask the hospice team what they can document

Ask the hospice social worker which care needs they can describe in writing, so your employer has a clear record of what the household is carrying. Ask what respite options are available and under what conditions, since a short respite stay can give you a defined block of time to work or rest. Ask the questions plainly and write down the answers with the date you received them.

Keep one folder

Keep one page with the hours log, the leave dates you have requested, and what you have told your employer. Store it with the rest of the hospice paperwork. When the hours change, as they usually do, you will have the numbers in front of you rather than trying to rebuild them from memory. The Local Help for Hospice Families page lists who in west St. Louis County can help you think through the next step.