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Taking control and accepting what you can't control

Key points

  • You cannot control the disease, but you can control how you respond to each moment. That is your true power.
  • Guilt is only helpful if it leads to a change you can actually make. Let go of guilt about things outside your control.
  • Acceptance does not mean you feel ready or at peace. It means you stop fighting reality and start acting on what is true now.
  • Use small, concrete tools like the 'Next Right Step' question and the Control/Non-Control List to stay grounded.
  • Asking for help is a sign of courage, not weakness. You do not have to do this alone.
  • Taking care of yourself is not selfish; it is essential for sustaining your ability to care for someone else.

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

Step-by-step

  1. Pause and name what is actually outside your control. Write down three things you are trying to control that you cannot change, such as the progression of the disease, your loved one's mood swings, or their refusal to bathe. Then, say out loud: 'I cannot control this, and that is okay.' This simple act of naming helps your brain stop wasting energy on the impossible.

  2. Identify one small thing you can control right now. Ask yourself: 'What is the next right step for me in this moment?' It might be taking three deep breaths, drinking a glass of water, or stepping outside for 60 seconds. The Purple Sherpa suggests focusing on what is truly within your control, like the decisions you make and how you approach each moment. Start with something so small it feels easy.

  3. Practice the phrase 'I choose to respond by...' when something frustrating happens. For example, if your loved one refuses to eat, instead of feeling helpless, say: 'I choose to respond by offering a different food calmly, and then I will step away for five minutes.' This puts the focus on your action, not their reaction.

  4. Set a daily boundary that protects one non-negotiable need. For example, decide that you will take a 10-minute walk every afternoon, or that you will not answer care-related calls after 8 PM. Write it down and tell one person about it. This boundary is something you control, and it prevents caregiving from consuming every part of your day.

  5. Use a simple decision-making framework: ask yourself 'What would I advise a friend in this exact situation?' This shifts you from emotional overwhelm to a more objective perspective. Pamela D Wilson notes that looking at a situation from a dual perspective can help you make guilt-free decisions. Then, act on that advice for yourself.

  6. When guilt arises, ask: 'Is this guilt productive or destructive?' If you overreacted and feel bad, use that guilt as a motivator to apologize and do differently next time, as suggested by the James L. West Center. If the guilt is about things you cannot change (like not being able to stop the disease), recognize it as false guilt and let it go. Say: 'I forgive myself for not being perfect.'

  7. Create a 'control list' and a 'non-control list' on a piece of paper. On the left, write things you can influence, like your tone of voice, when you ask for help, or what you eat for lunch. On the right, write things you cannot control, like your loved one's memory or the future. Each morning, look at the left list and choose one item to focus on that day.

  8. Schedule one act of self-care that is not about caregiving, and treat it as a non-negotiable appointment. This could be calling a friend, reading a chapter of a book, or taking a bath. The Zinnia webinar emphasizes that caregivers often struggle to receive help, but receiving care for yourself is a form of taking control of your own well-being.

What not to do

  • Do not try to control your loved one's behavior or emotions. This backfires because it leads to frustration for both of you and reinforces your sense of powerlessness. Instead, focus on controlling your own response: speak calmly, set a limit, and then disengage if needed.

  • Do not wait until you 'feel ready' or 'at peace' to make decisions. The Dementia Caregiver Support For Christians warns that acceptance is not the same as feeling ready. If you wait for emotional relief, you may stay stuck for months. Act based on what is true now, even if your feelings are still messy.

  • Do not use guilt as a reason to do more and more. Pamela D Wilson explains that caregivers sometimes do more to compensate for guilt, which leads to compassion fatigue and burnout. Instead, when you feel guilty, pause and ask if the guilt is realistic. If not, let it go. If it is, make a small change, not a huge sacrifice.

  • Do not isolate yourself by refusing help. Many caregivers feel they should handle everything alone. The All Home Care Matters video points out that asking for help is actually a courageous act that means you are not giving up. Refusing help keeps you overwhelmed and resentful. Start by accepting one small offer of help this week.

  • Do not compare your caregiving to an idealized 'saint' version of yourself. The All Home Care Matters video reminds us that no one can be a perfect, unconditionally giving caregiver. Trying to be that saint leads to terrible guilt. Accept your limits and be honest about what you can and cannot do.

  • Do not ignore your own needs because you think your loved one's needs are more important. The Zinnia webinar highlights that caregivers often put their own needs on the back burner, which leads to exhaustion and resentment. Taking care of yourself is not selfish; it is necessary for you to continue caring for someone else.

Practical tools

  • The 'Next Right Step' Question

    When you feel overwhelmed, stop and ask yourself: 'What is the next right step for me right now?' This could be as simple as sitting down, taking a sip of water, or saying 'I need a minute.' The Purple Sherpa recommends this as a way to focus on what you can control in the present moment. Write this question on a sticky note and put it on your bathroom mirror.

  • The Control/Non-Control List

    Take a piece of paper and draw a line down the middle. On the left, write 'I can control' and list things like: my tone of voice, when I take a break, what I say to myself, whether I ask for help. On the right, write 'I cannot control' and list: the disease progression, my loved one's mood, their memory, the future. Each morning, pick one item from the left to focus on. This tool is based on the concept of locus of control from Dementia Careblazers.

  • The 'What Would I Tell a Friend?' Script

    When you feel guilty or stuck, imagine a close friend is in your exact situation. What would you say to them? You might say: 'You are doing enough. It is okay to take a break. You cannot fix everything.' Then say those same words to yourself out loud. Pamela D Wilson suggests this dual perspective helps you make decisions with less guilt.

  • The 'Productive Guilt' Check

    When guilt arises, ask yourself: 'Is this guilt helping me change something I can actually change, or is it just making me feel bad?' If it is productive (e.g., you overreacted and can apologize), use it as a motivator. If it is destructive (e.g., guilt about the disease itself), say: 'This guilt is not helpful. I release it.' The James L. West Center explains that guilt can be a positive motivator when it leads to changed behavior, but destructive when it is disproportionate.

  • The 'One Thing' Daily Commitment

    Each morning, decide on one thing you will do today that is entirely for you, not for caregiving. It could be listening to a favorite song, calling a friend, or taking a 5-minute walk. Write it down and check it off when done. This tool is inspired by the Zinnia webinar's emphasis on receiving help and tending to your own needs.

  • The 'I Choose' Reframe

    When you feel like a victim of circumstances, reframe your language. Instead of saying 'I have to stay home,' say 'I choose to stay home because it is the best option right now.' Instead of 'I can't take a break,' say 'I choose to take a 10-minute break because I need it.' This small shift reminds you that you have agency, even in difficult situations. Dementia With Grace emphasizes that you are in control of how you respond.

Discuss with your clinician

If you feel overwhelmed by guilt or resentment to the point that it affects your daily functioning, discuss these feelings with a therapist or counselor who specializes in caregiver mental health.

If you are considering making a major care decision (like moving your loved one to a facility or stopping certain treatments), talk with your loved one's doctor and a social worker to understand all options and resources.

If you experience symptoms of depression or anxiety (persistent sadness, loss of interest, changes in sleep or appetite), seek a professional evaluation. These are common in caregivers and are treatable.

If you are unsure about the safety of a caregiving situation (e.g., your loved one is wandering or becoming aggressive), consult with a geriatric care manager or your local Area Agency on Aging for guidance.

Related guides

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