Most families plan for the hospice visit schedule and only later notice their own sleep. The nurse comes on her day, the aide comes on his, and the hours in between belong to whoever is in the house. What goes wrong is rarely dramatic. It is a slow loss of margin, and by the time anyone sees it, it has been building for weeks.
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.
What the drift looks like from inside the house
Look for changes in ordinary things rather than in how you feel about them. You reread the same instruction sheet twice. You answer the phone without checking who is calling. You start the kettle and walk off from it. You say the same sentence to your parent twice in one hour and cannot recall saying it the first time. You cannot name the last night you slept straight through. These are not symptoms to diagnose in yourself or anyone else. They are plain signs that the margin is gone, and they are easy to miss because you are the one doing the watching.
Count the hours for one week
Keep a sheet of paper where you will see it. Each morning, write down the hours you were actually asleep, not the hours you spent in bed. Write down each time you were woken for your parent and what you were needed for. At the end of the week, add it up. Then count the daytime hours you went without interruption from your parent's needs. The number is not a score. It is a fact you can bring to the hospice team, to family, or to anyone who could take a block of hours from you.
Set the line before you cross it
Decide in advance what will trigger a change. It might be two nights in a row below a number you choose, a meal skipped on a day with no visit, or a mistake in something you would normally catch. Write the line down. Then decide who you will call when you reach it, and agree that call with a sibling, a friend, or a neighbor now, not at three in the morning.
What to ask the hospice team
Ask the hospice social worker which overnight help is covered under your parent's benefit and which would be paid privately. Ask whether the team can add aide time at hours you name, and what happens to that schedule if your parent's needs change. Ask how a family member reaches the team after hours and whether a second person can be added to that call list. The social worker can explain what the benefit covers and what it does not. The outline of those rules is set out on the Sources page, and the details of your agency's visits belong in the plan of care, which you can ask to see.
Where the help can come from
Local options in west St. Louis County are listed on Local Help for Hospice Families. Check each one against the same questions: whether overnight hours are included, how quickly a shift can be filled, and what the caregiver will and will not do. A hired or in-home non-medical caregiver can give reminders and pick up prescriptions as an errand. Medicine itself stays with the family, the doctor, and the pharmacist, and that should be stated plainly in any agreement you sign.
What to do tonight
Protect one stretch of sleep, even a short one, and tell someone the line you wrote down. Eat one thing that did not come from a wrapper. The rest of the list can wait for daylight, when the team is answering the phone and the visit schedule is easier to read.