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The Rolling Grief of Dementia: Grieving Someone Who Is Still Here

The grief experienced when someone you love has dementia is a unique type of grief. The person you love is still here, but you are already losing parts of them as the disease changes them, and those losses trigger grief.

Not only that, but it's a series of losses. It's what I've come to call "rolling grief" in my work with caregivers, where fresh waves of grief are triggered over and over again, as new losses reveal themselves. You're doing the hard work of grieving all while still trying to stay connected and care for your loved one with dementia.

Add into the mix the anticipatory grief that is a common experience whenever terminal illness is involved. It's the grief you start to feel in advance of their death, or even in advance of more losses that you know are coming as dementia progresses.

It's no surprise that caregivers are 30 times more likely to be depressed than non-caregivers as they carry the heavy burden of this grief, among the other stressors that come with caregiving.

How to Cope with Grief in Dementia Care

  • Recognize losses as losses, and that they need to be grieved. The loss of the person you knew, of companionship, of plans made for the future, of the shared memories, of your identity as a spouse as it shifts to caregiver, of your free time...their is no shortage of things lost.

  • Know that it is "real" grief. Grief doesn't belong only with comes with losses of all kinds, and research even shows that anticipatory grief has just as strong on impact on us emotionally as grief that comes at someone's death.

  • You are not alone. This type of grief is a normal experience, extremely common in dementia caregivers. There is nothing wrong with you and nothing for you to feel guilty about for feeling this way.

  • Find ways to grieve. Grief and mourning look different for everyone, so there's no one way to do it. For you it might be a support group or talking to a friend or counselor, walking at the beach, journaling, crying, prayer...whatever it is that helps you. And different things might help at different times.

  • Connect to others in the same shoes. Other people in similar situations are a huge resource for support and understanding. There are in-person support groups, online support groups, and even Facebook groups. Or you can try connecting with caregivers or families on a more individual level, finding a dementia care buddy or even mentor. Talk to people who "get it."

  • Allow yourself to vent. It's okay to admit that some parts of caregiving are difficult, frustrating, maddening, and awful. There is sacredness and vulnerability and some truly lovely moments possible when you move into a caregiving role, but there is also the sad and scary side, the overwhelming parts that feel like they will break you. Give yourself grace and space for all the feelings that come.

  • Be fully present. Often we choose to avoid painful feelings, but one of the best things you can do is learn to accept the pain and ride it out. Grief hurts but it isn't necessarily means that you love someone. It can sound counterintuitive to let yourself feel the pain as a way to feel less pain, but when we numb or distract ourselves, the pain is just lying in wait for later.

  • Take care of you. Be kind to yourself and recognize when it is too much, when being present is more than you can do. Make use of any resources available for respite care, ask for help, give yourself permission to do things that nourish you.

Walking someone through the journey of dementia is one of the hardest things you will ever do. If you're feeling overwhelmed, please don't go it alone. Get in touch if you need help figuring out where you can find support.

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