Six areas to watch
- Walking and falls
- Everyday tasks
- Thinking and talking
- Bladder and bathroom
- Medicines
- Shunt-related changes
Changes do not prove what is causing them. But new, worsening, or sudden changes are worth telling the care team about.
Write it down in four parts
- Usual. What is normal for this person?
- Change. What is different now?
- When. When did it start, and how often does it happen?
- Impact. How does it affect the day?
- Example
- Usual: Mom walks to the mailbox on her own every day. Change: She now takes short, shuffling steps and holds the railing. When: Started about three weeks ago; worse in the evening. Impact: She stopped going to the mailbox and nearly fell twice.
After a fall
Write down falls and near-falls the same day, and report every fall to the care team, even if no one was hurt. Call 911 if they hit their head, are hurt, cannot get up, or seem confused or very sleepy.
If they have a shunt
Ask the care team now which warning signs need 911, which need a call to the shunt team right away, and which can wait for a call soon. Keep that plan with an emergency information sheet.
Before appointments
Bring your notes and your top three concerns. Write your questions down ahead of time so they do not get lost in a short visit.
Free app
AHSN Companion
Write down changes in daily life using Usual, Change, When, and Impact, keep your questions in one place, and bring a clear one-page summary to every appointment. It also has a who-to-call guide and an emergency information sheet. Your notes stay on your phone.
Open the appJoin the caregiver series
"Notice, Note, Speak Up" is six sessions for families and care partners. Tell us you are interested and we will contact you when sessions are scheduled.
Helpful resources
Delaware Aging and Disability Resource Center
Caregiver support, respite, and services. 1-800-223-9074 (24/7).
Hydrocephalus Association
Information, support, and a helpline. 888-598-3789 (weekdays 9 to 5 ET).