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When the Ground Shifts: Coping with Grief During Fluctuating Dementia 'Gem States'

Some days your loved one seems almost like their old self; other days they are distant, confused, or irritable. This up-and-down pattern is common in many dementias, especially Lewy body dementia, and it can make your grief feel like a roller coaster. You may find yourself grieving a loss one day, only to have hope return the next, then feel the loss again. This article gives you concrete ways to ride those waves without being swept away, honoring your grief while staying grounded in what is real and present.

Key points

  • Fluctuating symptoms are common in many dementias, especially Lewy body dementia, and are not a sign of failure or reversal.
  • Your grief will cycle through separation, liminal, and re-emergence states repeatedly – this is normal, not a setback.
  • Name your emotions without labeling them good or bad; this gives you power over them.
  • Use a 'gem state' log to track patterns and separate the disease from the person.
  • On good days, connect without pressure; on bad days, lower expectations to safety and comfort.
  • Build a daily 'grief anchor' ritual to remind yourself that you exist apart from the roller coaster.
  • Do not isolate – share your experience with at least one person who understands fluctuating loss.
  • Prioritize your own health now; do not wait for a stable period that may never come.

Why Fluctuations Make Grief So Confusing

When dementia symptoms come and go, your grief doesn't follow a neat path. One morning your mother might recognize you and share a memory; by afternoon she may be agitated and not know who you are. This is not a sign that she is 'faking' or that the disease is reversing. It is the nature of many dementias, especially Lewy body dementia, where brain function can vary dramatically from hour to hour or day to day. As one person with Lewy body dementia described it, there is a 'mood where you just don't care to do anything' that can come and go, and it is 'very much a roller coaster' that can be scary if you don't understand it is the disease, not the person.

The Grief Cycle in a Fluctuating Context

The Dementia Grief Model describes three states: separation (feeling the loss), liminal (a confusing in-between), and re-emergence (finding a new normal). With fluctuating symptoms, you can cycle through all three in a single week. On a 'good' day you may feel re-emergence, thinking 'maybe we can manage this.' Then a 'bad' day hits, and you are thrown back into separation, grieving the person you thought was returning. This back-and-forth is exhausting and can make you feel like you are losing your grip. The key is to recognize that these cycles are normal for dementia grief, not a sign you are failing. Each time you move through them, you build a little more resilience.

The Unique Pain of Ambiguous Loss

Dementia creates a situation where your loved one is both here and gone at the same time. When symptoms fluctuate, that ambiguity intensifies. You may feel guilt for grieving on a bad day, then joy on a good day, then guilt for feeling joy. This is what experts call 'ambiguous loss' – a loss that has no clear end point. It is normal to feel like you are 'walking on eggshells' or that you can't 'catch up with your feelings' because another loss hits before you have processed the last one. Naming this experience – 'this is ambiguous loss, and it is painful' – can help you stop fighting it and start living with it.

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

Step-by-step

  1. Step 1: Name the fluctuation out loud to yourself. Say: 'Today is a hard day. Yesterday was easier. This is the disease, not a failure on my part or theirs.' This simple act of naming gives you power over the emotion rather than letting it control you. Do this every time you notice a shift, even if you have to say it ten times a day.

  2. Step 2: Create a 'gem state' log for one week. Each morning and evening, jot down one word for your loved one's state (e.g., 'sparkly,' 'foggy,' 'irritable,' 'present') and one word for your own feeling (e.g., 'hopeful,' 'sad,' 'angry,' 'numb'). Do not judge the words. After a week, look for patterns. You may notice that certain times of day or activities trigger better or worse states. This log is not for predicting – it is for seeing that the fluctuation is real and not your fault.

  3. Step 3: On a 'good' day, do not assume it will last. Instead, use it as a chance to connect without pressure. Ask a simple question like, 'What is one thing you are glad about today?' or share a short positive memory. Keep interactions brief and low-stakes. If the good day turns, you have not lost anything – you had a moment of connection, and that is enough.

  4. Step 4: On a 'bad' day, lower your expectations to zero. Your only goal is to keep your loved one safe and comfortable. Do not try to reason, remind, or reorient. Instead, use a calm voice and simple redirection: 'I see you are feeling restless. Let's sit together for a few minutes.' If they are agitated, give them space. Your job is not to fix the day, just to get through it.

  5. Step 5: Separate your grief from their state. When your loved one is having a bad day, you may feel a surge of grief. That is normal. But remind yourself: their bad day does not mean you have lost them forever. The grief is yours to carry; it does not define them. Say out loud: 'I am sad right now, and that is okay. This is my feeling, not their reality.'

  6. Step 6: Build a 'grief anchor' – a small ritual you do every day regardless of their state. This could be lighting a candle for five minutes, writing one sentence in a journal, or stepping outside to take three deep breaths. This anchor reminds you that you exist apart from the roller coaster. It gives you a tiny piece of control in an uncontrollable situation.

  7. Step 7: When you feel guilt for wishing it were over, recognize that as anticipatory grief. Many caregivers feel shame for thinking 'I wish this was done' or 'they are already gone.' This is not a betrayal; it is a natural response to prolonged suffering. Acknowledge the thought without acting on it. Say: 'I am tired, and it is okay to be tired. I am not giving up; I am just feeling the weight.'

  8. Step 8: Plan one small thing for yourself each week that has nothing to do with caregiving. It could be a 15-minute phone call with a friend, a walk alone, or reading a chapter of a book. Put it on your calendar. When fluctuations make you feel out of control, this planned moment of self-care is a promise you keep to yourself. It is not selfish; it is survival.

  9. Step 9: Share your fluctuation experience with one trusted person who 'gets it.' This could be a support group member, a counselor, or a friend who has been through dementia care. Tell them: 'Some days I feel like I am losing my mind because the symptoms change so much.' Just saying it out loud to someone who understands can break the isolation. Do not try to explain to people who have not lived it – they may try to 'fix' you, which only adds to your burden.

  10. Step 10: At the end of each week, look back at your log and notice one thing you did well. Maybe you stayed calm during a hard moment, or you asked for help, or you simply got through the week. Acknowledge that. You are not failing; you are doing something incredibly hard with no roadmap.

What not to do

  • Do not assume a 'good' day means the disease is not progressing. This can lead to false hope and then a harder crash when symptoms return. Instead, enjoy the good day for what it is – a gift – without expecting it to continue.

  • Do not try to 'fix' a bad day by reminding your loved one of who they used to be. Saying 'Don't you remember? I am your daughter' can increase their confusion and distress. Instead, meet them where they are: 'I am here with you, and that is what matters right now.'

  • Do not compare your grief to what you think it 'should' be. There is no right way to grieve a fluctuating loss. Some days you will cry; other days you will feel numb. Both are normal. Avoid judging yourself for not feeling 'enough' or for feeling 'too much.'

  • Do not isolate yourself because you are embarrassed by the ups and downs. Many caregivers withdraw because they feel their situation is too confusing to explain. But isolation makes grief heavier. Find at least one person or group who understands that dementia grief is not linear.

  • Do not neglect your own health because you are waiting for a 'stable' period. There may never be a stable period. If you wait to rest until things settle, you will burn out. Prioritize sleep, hydration, and movement now, even if only in small doses.

  • Do not try to predict the future based on today's state. A bad day does not mean next week will be worse, and a good day does not mean the disease is slowing. Let go of prediction. Focus on what is in front of you right now.

Practical tools

  • The 'Gem State' Quick Reference Card

    Create a small index card with four common states your loved one shows (e.g., 'Sparkly' – alert and engaged; 'Foggy' – confused but calm; 'Irritable' – agitated or angry; 'Absent' – withdrawn or unresponsive). Tape it to your fridge or keep in your pocket. When you feel overwhelmed, glance at the card and name the state. This helps you separate the disease from the person and gives you a script: 'They are in Foggy mode right now. I will use a calm voice and simple words.'

  • The 'One-Minute Reset' Breathing Pattern

    When you feel grief surge on a bad day, stop and do this: breathe in for 4 counts, hold for 4, breathe out for 6. Repeat three times. This activates your parasympathetic nervous system and stops the panic spiral. You can do it while sitting next to your loved one or in the bathroom. It takes one minute and gives you a tiny island of calm in the chaos.

  • The 'Grief Sentence' Journaling Prompt

    Each evening, write one sentence that completes this prompt: 'Today I felt grief when...' Do not elaborate. Do not judge. Just write. For example: 'Today I felt grief when she asked me who I was.' Over time, this practice helps you see that grief is a visitor, not a permanent resident. It also helps you notice patterns – maybe certain times of day or activities trigger more grief.

  • The 'Three Good Things' Variation for Fluctuating Days

    Instead of a gratitude journal (which can feel forced on bad days), try this: each evening, write down three things that happened, good or bad, that were 'real.' For example: '1. She smiled when I played her favorite song. 2. I got angry and then apologized to myself. 3. The sun was warm on my face for five minutes.' This tool helps you stay grounded in reality, not in the story you tell yourself about the day.

  • The 'Phone a Friend' Script for Hard Days

    Keep a short script on your phone for texting a trusted friend: 'Having a rough day with Mom's symptoms. Not looking for advice, just need to know someone hears me. Can you reply with a heart emoji?' This gives you connection without the pressure of a long conversation. You can also use it in a support group chat.

  • The 'Environment Reset' Checklist for Bad Days

    When your loved one is in a difficult state, run through this quick checklist: (1) Is the room too bright or too dark? Adjust lighting. (2) Is there background noise? Turn off TV or radio. (3) Are they hungry, thirsty, or needing the bathroom? Offer a small snack or drink. (4) Are they overstimulated? Move to a quieter space. Sometimes a simple environmental change can shift the state, and even if it doesn't, you have done something concrete.

Discuss with your clinician

Ask your doctor: 'Could my loved one's fluctuations be related to medication side effects or interactions? Should we review their current medications?'

Ask your doctor: 'Are there any treatments that might help stabilize mood or cognition in the fluctuating states, especially for Lewy body dementia?'

Ask your doctor: 'When should I be concerned that a sudden change in state is a medical emergency, like an infection or delirium?'

Ask your doctor: 'Is it safe to use over-the-counter sleep aids or calming supplements on bad days? What are the risks?'

Ask a counselor or support group: 'How can I tell if my grief has become complicated depression that needs professional help? What are the signs?'

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