Anticipatory grief is real.

Here’s how to get help.

By Mary Chaput

I feel like I barely made it through the holidays in one piece. The family was all here; we celebrated with all of our usual traditions and yet I am so incredibly sad. Although my husband is still with us, he has dementia and I could often see confusion and anxiety on his face despite the love and support the family provided. I wish I could just be happy that I still have him next to me instead of feeling sad that things aren’t the way I always imagined they would be.

Grief is a universal response to loss; grief is a normal process. Caregivers often also experience ambiguous grief when, like your husband, the care recipient is physically present but psychologically or emotionally absent. The losses experienced in dementia are incremental and are not generally clearly defined making the mourning process rather complex. Handling these continuous losses over time can be emotionally exhausting.

Anticipatory grief when caring for someone with a terminal illness, such as dementia, is also not uncommon; we are may experience sorrow for the losses we anticipate in the future – plans to travel, plans to grow old together – as well as reconciling the fact that there will be a final physical loss. Caregivers may face fears of their own loss of independence and socialization as well as the fear of being alone. Anticipatory grief can be just as intense as the grief we feel when someone dies and, while not discussed as much as the grief felt after a death, it is a normal process for caregivers.

These types of grief are often difficult to acknowledge but they are a normal response to a caregiver’s situation. The grieving process is fluid, varying from person to person. There is no right way or wrong way to feel.

If anticipatory grief is affecting your day-to-day well-being, reach out to your support network or to a support group. Find a way to express your emotions such as through meditation, journaling or exercise. Make the most of the time you have with your husband and, most importantly, take care of your own emotional and physical health.

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