💜 Guide for Caregivers

What You May Need to Do

• Medical advocate: Attend appointments, take notes, ask questions
• Medication manager: Track pills, schedules, refills
• Appointment coordinator: Schedule, transport, communicate with team
• Daily care: Meals, hygiene, mobility assistance
• Emotional support: Listen, comfort, be present
• Researcher: Learn about trials, options, supplements
• Financial manager: Insurance, bills, disability paperwork

At Appointments

• Bring a notebook or use phone to record
• Write questions beforehand
• Ask for clarification — no question is dumb
• Get copies of all scans and reports
• Know who to call for urgent issues

Medication Management

• Use a pill organizer (weekly)
• Set phone alarms for doses
• Keep a medication list with doses and times
• Track side effects in a diary
• Know which meds can't be mixed

Managing the Home

• Clear pathways (fall prevention)
• Grab bars in bathroom
• Non-slip mats
• Bed rail if needed
• Keep emergency numbers visible
• Prepare easy-to-eat meals in advance

Common Changes

• Memory issues: Forgetting conversations, repeating things
• Personality shifts: Irritability, apathy, disinhibition
• Language problems: Word-finding difficulty
• Confusion: Disorientation, especially at night
• Mood swings: Depression, anxiety, emotional lability

How to Cope

• Remember: It's the disease, not them
• Don't argue or correct — redirect
• Keep routines consistent
• Use simple, clear communication
• Create a calm environment
• Allow extra time for tasks

What They Need From You

• Presence: Just being there matters
• Listening: Without fixing or advising
• Normalcy: Talk about regular things, not just cancer
• Hope: Realistic but not dismissive
• Permission: To feel scared, angry, sad
• Autonomy: Let them make decisions they can

What NOT to Say

• ❌ "Everything happens for a reason"
• ❌ "Stay positive!" (toxic positivity)
• ❌ "I know how you feel"
• ❌ "My aunt had cancer and..." (comparing)
• ❌ "You should try [miracle cure]"

Better Things to Say

• ✅ "I'm here with you"
• ✅ "This is really hard"
• ✅ "What do you need right now?"
• ✅ "I don't know what to say, but I love you"
• ✅ "You don't have to be strong"

Signs of Burnout

• Exhaustion that doesn't improve with rest
• Getting sick more often
• Feeling resentful (then guilty about it)
• Withdrawing from friends and activities
• Sleep problems
• Difficulty concentrating
• Feeling hopeless

Self-Care Essentials

• Sleep: Protect your sleep — you need it
• Eat: Don't skip meals
• Move: Even a 10-minute walk
• Breaks: Step away, even briefly
• Connect: Talk to friends, don't isolate
• Accept help: When offered, say yes
• Professional support: Therapy is not weakness

Getting Help

• Respite care: Someone to take over for hours/days
• Home health aides: Professional help with daily care
• Support groups: Connect with other caregivers
• Online communities: When you can't leave the house
• Family meetings: Divide responsibilities