It might be the hardest part of caregiving: Watching your loved one slip away step by terrible step, knowing you can’t stop the decline and grieving the loss, long before they’re actually gone. Psychologists call this process anticipatory grief, and it’s very common among caregivers and family members of those suffering from Alzheimer’s disease, cancer, and other terminal illnesses.
“As a disease progresses, there is so much frustration and sadness associated with watching the person you once knew go away,” says Vince Corso, M.Div, LCSW, CT. “It can be overwhelming.”
Corso provided care to his mother, who suffered from Alzheimer’s. He found one of the painful milestones of the disease as the point at which she no longer recognized him. “My mom didn’t recognize us, and she confused us with other people. As a son and a caregiver, that was really hard. I had to leave the room.” But after a period of time, he says, he became acclimated to his new reality and began to accept it. He found that sharing the sense of loss with family members was very helpful. “It’s so crucial that family members talk about the loss.”
If your loved one’s condition has advanced, consider asking their physician whether it may be time to transition to hospice care. In addition to providing the right level of care for patients whose illness has progressed, hospice also provides emotional support to families and friends, beginning when their loved one enrolls in hospice.
Here are some other ways caregivers can work through their feelings of anticipatory grief:
Take time to examine unresolved issues between you and your loved one. “Say what needs to be said,” Corso advises. And if your family member is still well enough, settle legal and financial matters and discuss end-of-life wishes.
Learn about your family member’s condition—know the symptoms, the side effects from any treatments, and the prognosis. It may help you to feel in control if you understand what is coming down the pike.
Find a support group of people who are experiencing the same thing, whether it is online, in person, or over the phone. “Someone in a similar situation can provide a lot of insight,” says Corso. “And it’s okay to be honest about your feelings. You’re not being disrespectful to your family member if you express your frustration.”
Reach out to family and friends or hire someone to help with the care of your loved one. Don’t put your life on hold. Meet with friends and try to have fun when you can. “In the long run, it will help the patient and yourself,” says Corso. “You’ll have more energy to care for your loved one and to do what you need to do.”
Even though your family member is no longer able to participate in activities as they could before, they can still enjoy pleasurable activities with you. Take mom outside for some fresh air, play music for her, do simple puzzles if she is able. In the end, these moments might be what you cherish most.
When illness or injury robs your loved one of the ability to remember things about themselves, it can be scary and profoundly difficult. How do you help them cope with the changes in memory and identity?
Look for ways to add new activities to your loved one’s life, or think about how you might incorporate elements of a favorite pastime. If your mother was an avid golfer, she may have no interest in taking up knitting if her doctor tells her to stay off the links. Ask her what she misses about golf, though, and you may realize that she misses the camaraderie more than the activity itself. Would she be able to meet her foursome for lunch after they’ve finished their round?
Remember too that this is a type of loss. Feelings associated with the grieving process, including denial, anger, and depression, are normal. Talking to a social worker, therapist, clergyperson, or even a sympathetic friend may help you or your loved one manage the emotions and come to terms with the loss. If there’s a support group in your area, hearing how others have coped with the changes you’re experiencing can provide insight and concrete steps, and learning that you aren’t alone in your feelings of anticipatory grief can be reassuring.