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making caregiving decisions when there's no clearly right answer

Key points

  • You always have a choice, even when it feels like you don't. Frame caregiving as a choice, not an obligation, to reclaim your power.
  • Use the three-step process: identify your personal reason, filter out unhelpful opinions, and own your decision without guilt.
  • Most decisions are not permanent. You can undo a decision to keep someone at home or move them to a facility. Flexibility is your friend.
  • Ask 'What is the next right step?' instead of trying to solve everything at once. This reduces overwhelm and keeps you moving forward.
  • Your reason for a decision is your foundation. If your reason is weak (e.g., 'because others told me to'), you'll struggle when things get hard. If it's strong (e.g., 'because I need to keep them safe'), you can stand firm.
  • You are not a bad caregiver for making a hard choice. You are making the best decision you can with the information you have. Give yourself grace.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Pause and name the decision in one written sentence.

  2. Find your own honest reason for each option.

  3. Consider what your loved one would have wanted: check advance directives, past conversations, or values they expressed.

  4. Make the decision, then ask: 'What is the next right step I can take in the next 24 hours?'

  5. Set check-ins at one week and one month to revisit if reality has changed.

What not to do

  • Don't decide solely because someone else told you to.

  • Don't stay stuck hoping a perfect answer will appear; endless research and waiting is still a choice to keep the status quo.

  • Don't make a major decision in a crisis if you can safely wait 24–48 hours.

  • Don't sacrifice your own health to burnout.

  • Don't let guilt drive the choice; ask instead what is most loving and practical for both of you.

  • Don't say 'I have no choice'; naming your choice returns your power.

Practical tools

  • The 'My Reason' Worksheet

    Write the decision at the top. Draw two columns for each option. Under each, write your honest, personal reason for choosing it. Circle the reason that feels truest to your values and your loved one's well-being—not one borrowed from someone else.

  • The 'Loved One's Wishes' Reference

    Keep a single page or card recording what your loved one has said about care, plus any advance directive details. When a decision arrives, let their prior words guide you.

  • The 'Check-In' Reminder

    After deciding, set two recurring phone reminders: one for a week out, one for a month. When they chime, ask: 'How is this working for my loved one? How is it working for me?' Adjust if needed.

  • The 'Choice Reframe' Statement

    When you catch yourself thinking 'I have no choice,' pause and say out loud: 'I have a choice. I am choosing to [fill in the blank].' Write it on a sticky note for your mirror or dashboard.

Discuss with your clinician

Ask your loved one's doctor: 'Given their specific diagnosis and stage, what are the safety risks I should prioritize when making decisions about staying at home versus moving to a facility?'

If you are considering medication to manage behaviors (like agitation or hallucinations), ask: 'What are the risks and benefits of this medication for my loved one? How will it affect their quality of life?'

If you are considering stopping a medication or changing a dosage, always discuss with the prescribing clinician first. Do not make changes on your own.

Ask about palliative care or hospice: 'Is my loved one eligible for palliative care or hospice? How would that change our care options and my decision-making?'

If you are considering a move to a facility, ask the facility's nurse or social worker: 'What level of care do you provide for my loved one's specific condition? How do you handle behaviors like wandering or aggression?'

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