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Alzheimer's Disease Health Center

Caregiver Grief Triggers Mixed Emotions

From the initial diagnosis to a loved one's death and beyond, caregivers are faced with a barrage of conflicting feelings. Here's how to cope with them.
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A Range of Feelings continued...

 

"Caregivers' depression often improves following the loss, but not always," says study researcher and psychologist Holly G. Prigerson, PhD, a grief and bereavement expert at Yale University School of Medicine.

 

"The emphasis is often on the great relief that occurs following the death, once the caregiving and agonizing is over," she tells WebMD. "They think it should be downhill after that, but it's not as easy as that. These people typically have been caregivers for about 10 years -- that has been their identity and mission -- and it can be very difficult for them to regain their life.

 

"I just read a book about a woman whose husband had ALS. After he died, she became suicidal because her main reason for living was to care for him. When he died, she had a gaping hole she had to fill. Just because someone feels relief doesn't mean they also don't feel huge amounts of grief, loneliness, and abandonment."

How to Cope

So how can caregivers better work through the barrage of emotions that occur during an after a loved one's illness?

 

  • Be more than a caregiver. "For many people, the role of caregiver is all-consuming," says Doka. "So when it ends, life can feel as though it's lost its meaning and purpose."

 

That's why it's important for caregivers to set up regular "me" time, says Prigerson. "You need to make sure you're not socially isolated, and your days prior to the death consist of just more than just caregiving. We found that one of the great aspects of caregiving burden that leads to depression isn't from the hours spent giving care, but that the caregiver feels deprived of their own time. You really need to take time for yourself, whether it's going for walk or enjoying a nice dinner out sometime."

 

  • Nurture a network ... Many caregivers feel it's their responsibility to offer care and hesitate to seek help elsewhere. Bad move. "What I do on a clinical basis is have caregivers write down the names of all the people that could be in their network," says Doka. "Not just family members, but also friends, neighbors, or if they're involved in a faith community, consider members of their church, who can be a strong part of your network."

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