Grief in caregiving doesn’t wait until our loved one is gone. It’s with us throughout the entire journey — sometimes like a wave that knocks us down. Grief is teaching us lessons we never expected to learn.
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned that grief doesn’t only come after our loved one passes away. It’s present throughout our entire caregiving journey, from the moment of diagnosis through each individual change along the way.
The good news is that understanding grief — recognizing it, honoring it, and learning to move through it without getting stuck — can transform how we experience our caregiving journey. Today we’re sharing six essential tips to help you navigate grief with grace and compassion.
If you’re following along with the Navigating Dementia Caregiving Roadmap, this is part of Step 20.
Tip 1: Recognize That Grief Comes in Many Forms
“Caregiving grief is a collection of losses happening over time. We call this ‘drip grief’.” Sue Ryan
As we mentioned, sometimes these losses happen so gradually we don’t even realize them at first. Other times, they feel like a punch in the gut:
- The first time your loved one doesn’t remember their phone number, address, or birthday.
- Watching them struggle to brush their teeth or get dressed.
- Realizing you can’t have a meaningful conversation with them anymore.
- The moment when they don’t remember who you are.
These losses trigger sadness and anxiety. They are grief. Acknowledging them — not dismissing them — is an important step.
Losses come in many forms beyond memory:
- Changes in your relationship — going from child or spouse to feeling like the parent.
- Loss of your own independence and the life you used to have.
- Withdrawing from activities and friends.
- Grieving the dreams and future you expected to have together.
These feelings are valid. It’s completely normal to grieve the person they used to be while they’re still alive.
Grieving during caregiving is as real as grieving after death.
Tip 2: Give Yourself Grace and Honor Your Grief
What does giving yourself grace mean? It means not judging yourself when you’re sad about something that’s happening. When drip grief occurs throughout your caregiving journey, don’t think: “I should be handling this better.”
It’s okay not to have it together all the time. It’s okay not to have all the answers. Most importantly, honor your grief.
Honoring your grief is what helps you move forward. Don’t push it down. Don’t say you shouldn’t feel this way. Don’t ignore it. The only way to understand grief, deal with it, and move forward is to actually acknowledge and honor it — especially when you start feeling overwhelmed.
Practice saying things to yourself like:
- “It’s okay not to be okay.”
- “I’m allowed to feel frustrated because this situation is genuinely difficult.”
- “Help is all around me. I don’t have to know all the answers and I don’t have to do everything myself.”
Grief doesn’t need a perfect moment. Whether it’s crying in the shower, pulling over for a few minutes, or simply pausing to breathe — give yourself permission.
Take the time to allow yourself these emotions. Time for yourself is not selfish — it’s what you need to be your best for yourself and for your loved one.
Tip 3: Don’t Judge Your Grief — Yours or Anyone Else’s
Each of us moves through grief in our own way, and each experience we have is going to be different. If you catch yourself saying things like:
- “Other people seem stronger than me.”
- “Everyone else seems to be coping better than I am.”
- “I should be able to do this on my own.”
Stop. Your grief is yours. It doesn’t have to look like anyone else’s. You don’t have to defend it and don’t judge it. Allow it to be what it’s meant to be.
Needing help doesn’t mean you’re a failure — it just means it’s time to reach out for help. Grief is not a problem to solve. It’s something to acknowledge and figure out how to move through.
When we’re not judging ourselves or others, it’s empowering because it allows us to feel what’s real instead of what we think it’s “supposed to be.”
Tip 4: Accept That Grief Is an Emotion We’re Meant to Have — It Serves a Purpose
Instead of thinking “Grief is a bad thing and I need to get over it.” try thinking of it as an emotion that serves a purpose. It helps us feel, helps us learn, helps us lean in and move through it, so we can come out the other side more whole than when we started.
It’s not something that needs to be fixed. It’s something that needs to be honored. Give yourself permission to grieve — that’s the best thing you can do to find your way through it.
Here are different strategies that help some people move through grief:
- Journaling or writing about what you’re thinking and feeling.
- Going out for a walk or exercising — the endorphins help you relax and think things through.
- Prayer and meditation to find peace and clarity.
- Therapy or counseling to talk things through with a professional.
- Talking with a good friend who will listen without judgment.
The key is to give yourself time. Don’t rush through the process. There’s no magic formula. Give yourself the time and space to work through your grief.
Accepting grief as one of the most important emotions in our lives gives us permission to process in the way that’s healthy for us.
Tip 5: Recognize Grief and Don’t Get Stuck in It
This is the key we’ve mentioned several times: recognizing grief without getting stuck in it. Grief impacts us emotionally, physically, and psychologically. The symptoms look different for everyone.
Watch for these emotional and behavioral symptoms:
- Trouble remembering things or concentrating
- Difficulty making decisions
- Disrupted sleep — either sleeping too much or not enough
- Feeling worn down or tired all the time
- Anger that’s disproportionate to the situation
- Increased anxiety and worry
- Feeling detached from other people
- Persistent sadness and despair.
Other behavioral symptoms to watch for:
- Losing interest in activities that used to bring joy
- Withdrawing socially and isolating yourself
- Changes in appetite — either loss of interest in food or eating more than usual.
Here’s something important to understand: We’re not meant to stay in any emotion. Grief is an emotion we’re meant to have, but not meant to stay in for the rest of our lives. We’re meant to be in that emotion, learn the lessons from it, and move on.
You’re going to gradually find yourself moving back to living — not because you’re forgetting your loved one, but because you’re remembering yourself.
When you’re stuck in grief today and can’t get through it, try changing your environment:
- Go on a walk
- Hit some golf balls at the driving range
- Call a friend and meet for coffee or lunch
- Attend a support group meeting
- Work on a project in the garage or garden
- Do something that brings you joy.
Sometimes people get stuck in grief for longer periods. You might notice you’re crying every day about different things, showing irritability, or displaying emotions that seem out of proportion. If this continues for weeks or months, it may be time to reach out for professional support.
We don’t have to be in a crisis to ask for support. Reaching out when you first sense something’s not right can help you stay grounded and keep you from going too far down a difficult path.
Tip 6: Let Grief Teach You — It Has Wisdom to Offer
This might shift the way you think about grief. Yes, grief is painful and difficult. However, it also carries wisdom and lessons. Grief is an emotion meant to teach us things if we’re willing to listen.
Here are some lessons grief can teach:
- Your strength and resilience in ways you never knew you had.
- Your ability to find beauty in even the tiniest moments and celebrate them without holding back.
- Compassion for yourself and others going through similar experiences.
As you move through grief, you’ll find it transitions. You’ll go from perhaps grieving the dementia and the unfairness of it all, to second-guessing your caregiving decisions, to eventually remembering your loved one before they had dementia. You’ll find joy in those memories. The person they were during those last difficult years will fade, and you’ll honor the person they were.
One beautiful lesson many caregivers learn: When we have a loved one with a neurocognitive diagnosis: Their heads may not remember us, but their hearts still do.
Moving Forward with Grace
Let’s summarize the six tips we shared:
- Recognize grief isn’t one thing, it’s many things — drip grief, anticipatory grief, and grief after your loved one passes.
- Give yourself lots of grace as you honor your grief.
- Don’t judge your grief or compare it to anyone else’s.
- Accept that grief is an emotion we’re meant to have — it serves a purpose.
- Recognize grief and don’t get stuck in it.
- Let grief teach you — it has lessons and wisdom to offer.
While grief is with you throughout your dementia caregiving journey, you don’t have to navigate it alone. By recognizing, honoring, and moving through grief with compassion for yourself, you find your way to healing and even joy along the way.
How do you recognize and honor grief in your caregiving journey? What helps you move through difficult emotions? Share your experiences in the comments below or on our Facebook or Instagram pages.
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