The caregiver’s grief process — before and after a loved one dies

Grief for carers starts long before their loved one passes away

The caregiver’s grief process is unique because grief and loss start before the death of the loved one. You experience a range of losses from independence to financial security, and you grieve the way your loved one used to be and what you know lies ahead. These before and after losses have their own characteristics and stages of grief to work through.

Types of caregivers’ loss and grief

Ambiguous loss and renewed grief

If you’re caring for someone suffering from dementia, a traumatic brain injury, or a stroke, you may experience ambiguous loss and renewed grief. Ambiguous loss means even though your loved one is still very much alive, he isn’t present the way he used to be — or at least not consistently. Renewed grief happens when someone fades in and out of lucidity as someone might do with Alzheimer’s disease. For an hour he might seem like his old self, and then he seems to disappear again, leaving you with pangs of grief.
Megan Carnarius, a registered nurse who has been involved in memory care for more than 30 years and founded Memory Care Consulting, says try not to cling to expectations and try to rejoice in the moments of lucidity.
“Find ways to soften the ways you fixate on wanting the person to be the way they used to be,” Carnarius says. “Moments of lucidity offer brief reminders that the whole person is still there. The physical brain is just damaged, so they can’t fully show up.”

Anticipatory grief

Anticipatory grief is also a natural stage of the caregiver’s grief process. It helps you process the death before it happens and sometimes leads to less grieving after the person has passed. Holidays tend to bring anticipatory grief to the surface because you may feel depressed knowing that your loved one will be different or won’t be there next year at the same celebration.
Instead of allowing grief to intrude on your ability to be in the present, Carnarius suggests considering all the changes that have come before — good and bad — and reflect on how the future will unfold.
“The future can’t all be dark, so remind yourself that there are positive things that you don’t know will unfold,” Carnarius says.

Grief after your loved one has died

Grief for carers at the time of death is often intense, even if you have anticipated and prepared for the death of your loved one. Besides working through the five stages of grief, you may battle with caregiver’s guilt and find yourself questioning your identity: “Who am I without being a caregiver?” Caregiver’s guilt is when you second guess things you did or didn’t do or said or didn’t say. You might even convince yourself that you could’ve saved your loved one if you did something more.

Understanding bereavement guilt

How to cope while caregiving

When you’re caregiving, you not only need to care for your loved one, but you need to care for yourself. Here are some ways to ease the caregiver’s grief process:

  • Talk to your loved one about her choices around care, finances, and end-of-life plans. Preplanning a funeral, future finances, and family matters will make your life less stressful when your loved one passes. Remember to prepare key documents, such as an advance care directive and power of attorney. Then you can have more peace of mind when making decisions on her behalf. If you know her wishes, you can respect her wishes.
  • Check in with yourself and ask important questions about your own abilities (physical, emotional, and financial). Can you afford to take time off of work to provide care? What kind of care would be too hard for you to do? Ask for help if you need it.
  • Talk with people in a grief support for carers group who have already gone down the path you’re facing.
  • Keep a journal throughout the caregiving and grieving process. Focus on one gratitude a day instead of your loved one’s decline. You might even consider including daily meditation into your schedule.

How to cope after the death of a loved one

When you’ve been providing care for a considerable amount of time, it can be hard to be left with nobody to care for but yourself. Hospice care services offer professionals trained to provide grief support for carers. They can guide the conversation of “what now.”
You also need to let yourself feel relief. Clinical psychologist Barry Jacobs wrote in an AARP article, that caregivers’ relief is earned and normal. It doesn’t mean that you’ll forget your loved one or regret your role as a carer.
“When a caregiver rejoices at the completion of this role, it doesn’t mean she is sorry to have chosen to take care of an ailing loved one; rather, it means she is happy to have reached the finish line of a grueling marathon that she wasn’t sure she had the heart and toughness to complete,” writes Jacobs.

Understanding and coping with grief attacks

When to seek help

Sometimes intense feelings of grief maintain their grip on you well beyond an average grieving period, such as one year. They can impair your ability to move on with life. If you’re wondering if you should seek grief counseling, ask yourself a few questions:

  • Are you still feeling overwhelmed or confused with your grief process?
  • Do you isolate yourself from friends and family?
  • Do you sometimes imagine your loved one will reappear?
  • Do you avoid going certain places that might trigger painful memories of the loved one you’ve lost?

If you answered yes, you may be suffering from complicated grief. Twenty percent of bereaved caregivers develop complicated grief, so you’re not alone. If you’d like suggestions for ways to find grief support, read our article, “Grief support is available in more ways than ever.”
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Photo credit: iStock

Find grief support

Search for grief support resources, such as in-person groups, online forums, and phone hotlines, available in your area.


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