Caregivers and their loved ones with degenerative conditions often experience grief in two forms, anticipatory and subsequent.1

Caregiving stipulates gains and losses. While caregivers acquire a new role, a greater intimacy with their loved one, and a more profound understanding of love, we also lose the life we are accustomed to living. The sense of security good health provides, the privacy of independence, and the stability of routine shatters upon hearing our loved one’s diagnosis and assuming the responsibilities of a caregiver. The anticipation of our loved one’s degeneration and our adapted lifestyle cause intense grief.

“Anticipatory grief refers to the process in which we begin to mourn past, present and future losses,” says Dr. Therese Rando.2

Grief subsequent to death often allows for future relief. But anticipatory grief is surrounded by fear. Both the caregiver and the care recipient fear for the unknown: the loss and change of intimacy, sex, privacy, independence, dreams, partnership, dignity, money, control, intellectual stimulation, friendship and family position3. There are only a few events in life that cause everything in our world to change. Caregiving and terminal illness are two of them. Here is just one example of a caregiver and her husband who had to redefine their life once her spouse became ill: “After Nancy’s husband suffered brain injury at age forty-two, his personality changed completely. She lost the patient and kind husband, lover, and companion she had known”6.

The loss of your former lifestyle and the person you knew are catalysts for anticipatory grief.

a white flower with an inspirational quote by CS Lewis that says "no one ever told me that grief felt so like fear"While grief will always be a part of caregiving—and of life—there are ways to stay connected to pain without being overwhelmed by it. We know that caregiving can suck up all of your free time but it is helpful to stay in touch with your life outside of caregiving. This means creating–you guessed it– easy to do self-care practices. Stay in touch with your hobbies, interests, and friends. Your whole life doesn’t have to start over, even if it gets shaken up. Anticipatory grief can work for you and your loved one. Use it as a force that allows you to communicate effectively and let it drive you both to show your love and appreciation for one another.

We have a very hard time “accepting” when we are “expecting.” Whatever you thought the caregiving process would entail, it is important to realign your expectations with reality. Fear of loss is only minimized by acceptance. There will be enormous changes for you and your loved one. But it is impossible for us to know how they will shape us and help us. That understanding will only come once we’ve reached the other side.



2 Dr. Therese Rando LegacyConnect

3 Anticipatory Grief by Jennifer Kay

4 Grieving Area Agency on Aging

5 Grief and Loss Family Caregiver Alliance

6 “Self-Care for Caregivers: A Twelve Step Approach” by Pat Samples

Originally published June 20, 2012 and republished with revisions on May 20th, 2014.

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  1. As the parent of a multiply disabled daughter of 29 years, I have referred to this as chronic grief. It keeps cropping up as was mentioned ebb and flow. This is different from depression which can happen as well. I do wonder if it is different for the caregiver if the recipient is at the end of life rather than the beginning. In my situation there is no end in sight. So every day I adjust to normal for that day, put one foot in front of the other and move forward. And some days just have to be pajama days where we both check out of decision making and just have some fun! Care for yourself folks! It’s the only way you get through it.

  2. This is so helpful. Thank you.

  3. Having a name for my grief helps a lot. This really is what happens on a cyclical basis. I went through the first round of grief which was the loss of what we had and the grief from dealing with the initial trauma of my husband’s injury. Now, I deal with this new grief, first on a monthly basis and now, spread out over time, knowing what I will be losing in the future which figuring out how to deal with it all. Not that you can be prepared, but this new type of grief hurts more than the initial one and ebbs and flows like the tides.


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