Anticipatory GriefYet Moments of Joy for Caregivers

By Diane stReveR anD Celia gRuzalsKi FoR Our plaCe

Individuals with Alzheimer’s or dementia face progressive stages in their disease. Through each of these stages, the caregiver experiences loss and what is called anticipatory grief - grieving that doesn’t occur all at once, as in a sudden death, but bit by bit, over time. It’s important to be aware of the changes that will take place. However, there is no typical time frame associated with each stage.

Stage 1: Individuals face common issues that come along with aging: difficulty finding the right words, taking more time to learn new things, and needing reminders about appointments or plans.

Stage 2: Cognition is still sharp, but distress can make an individual seem threatened and rigid. They thrive on routine and like to keep life moving as it always has. They may get possessive about relationships or belongings, yet they’re still able to engage socially.

Stage 3: Focusing on the moment at hand, an individual might not be aware of safety concerns or changing abilities. They have a hard time following conversations and remembering details, but they do still recognize body language and tone of voice. They may start hiding belongings as they become more suspicious of others, and have trouble with time and place, reverting back to the past in their lives.

Stage 4: Reactions are based on the senses; an individual may no longer recognize friends and family, but can react based on how people smell, look, sound, and move. They don’t realize when they may be in danger, so safeguarding the environment is critical.

Stage 5: Fine motor skills have become limited, although these individuals do have some use of their hands. Guiding movements, providing structure to the day, and keeping them safe from harm is key to reducing risks.

Stage 6: In this phase, individuals are nearing the end of life. There are still moments when they are alert and responsive, recognizing familiar voices, touches, smells, and tastes. Create moments of connection and let individuals know that it’s ok to let go, as they may feel they need permission to move on.

Anticipatory grief can feel like being on a roller coaster. You may feel sad on some days, and not experience grief on others. You may feel guilty over your shifting emotions. This is normal, and it doesn’t mean you love the person any less. Acknowledge your own feelings of grief as you see changes in your loved one. You may want to seek out a support group, to share with others your feelings and discuss ways to handle emotions. Gratitude journaling can change your focus to positive experiences you have shared. Talk together about wishes for advanced care and funeral arrangements. Recognize those moments of joy, as painful as they may be, as the opportunity to connect emotionally and spiritually.

When my mother was in her last stages of Alzheimer’s, a poem began to form in my head, and as the days passed, I realized I was expressing my grief on paper. “I Thought There Would Always Be Time” was the title of the poem, which was shared at her celebration of life service. We can’t anticipate our remaining time to be together, so create moments of joy and sharing when you can. Our Place is a 501C3 non-profit organization. For more information go to www.OurPlaceTN.org. Our Place TN 103 Cheeyo