Anticipatory Grief

Introduction

In a previous article I briefly described twelve types of grief. Today I would like to delve deeper into the topic of anticipatory grief which is a common shared experience by dementia family care partners. As usual, resources links are provided at the end of this post.

Anticipatory Grief Defined

Anticipatory grief is the emotional response to a loss that has not happened yet, but you know it will. Grieving is experienced slowly each day as you watch your loved one change into someone you no longer recognize. It is the caregiver and person with dementia grieving an accumulation of losses during the dementia process: Loss of independence, being able to to go out alone, loss of driver's license, loss of communication abilities, and loss of relationships along the way. It is feeling isolated as if nobody understands. It is the assumption that because they have not died yet, you should not be sad. It is the frustration of having the responsibility fall on your shoulders, but you can't fix things or turn back time. It is the up and down roller coaster of emotions desperately looking for solid ground to stand on. It is the worry of what will happen as the person's disease progresses. It is anticipating hardships yet to come and trying to plan for such challenges. It is trying to make positive memories with the person during the time that is left and effectively prepare for a future without the person. It is tying up loose ends, offering forgiveness, and learning to accept the certainty of death. The waiting time between diagnosis and death is both a blessing and a curse. It allows caregivers time to spend with the person and prepare for how they will continue living once their loved one has passed away. It is also chronic loss and a slow goodbye.

Symptoms of Anticipatory Grief

This type of grief is a process usually occurring in three stages: Shock about the upcoming loss, denial about the reality of the loss, and eventual acceptance. It is experienced by both the care partner and the person with the dementia. It occurs amongst people in the early stage of dementia and their care partner throughout the entirety of the disease process. Some grieving experiences are shared between the person who is sick and the person who is providing care. They are both anticipating unwelcome change and no longer being in each others life. They both may experience depression, loneliness, anger, fear, fatigue, and emotional numbness. The care partner is anticipating a life without their loved one and the secondary losses that will occur. The person who is dying grieves loss of independence, unmet dreams, and might worry about leaving their loved one behind.

Here are some losses people with dementia and their care partners experience:

Loss of health
Loss of freedom
Loss of job and recreational opportunities
Loss of intimacy and companionship.
Their loved one becomes reliant on a wheelchair or bed bound and is unable to participate in activities enjoyed by both themselves and their family care partner.
The person with dementia no longer recognizes who their loved one is.
The care partner is unable to have a conversation like they used to because their loved one's speech is impaired.
The person with dementia becomes unfit to drive.
The person with dementia has to move into a care home.
The caregiver is so busy with their loved one that they cannot enjoy fun activities.
The care partner may lose friendships and familial relationships.
The caregiver also experiences the loss of the relationship as it once was.

How to Prepare

According to The University of Rochester Medical Center, here are ways a care partner might prepare for the loss.

Experience sadness and depression as they realize the inevitability of death.
Experience concern for their loved one.
Ruminate on past experiences and have regret and feelings of guilt
Discussing funeral plans and what the loved one wants to happen upon his or her death.
Imagining life without the loved one. Visualizing holidays and important events.

Here are a some suggestions on how to cope with anticipatory grief and caring for someone with dementia:

Learn as much as you can about the person's diagnosis
Learn about the different grieving styles which can help you better understand yourself and others: Intuitive grieving- focuses on feelings; Instrumental grieving- focuses on action and wanting to do something; mixed is a combination of both.
Redefine hope. Let go of holding on to hoping they heal from their illness or become stronger. Instead hope they are comfortable, hope they are pain free, hope they find peace, hope you can make them laugh or smile.
Adjust your expectations for how much you will be able to do and allow yourself respite. You might experience difficulty concentrating and remembering things because of how stressed you feel.
Find a support group or at least one person who understands what you are going through.
Journal about how the day went. Write down your daily successes and challenges
Stay hydrated, eat protein, move your body
Have a set place for important things like keys and paperwork so you are not scrambling to find them when you need to take your loved one to an appointment or visit him or her in a care home.
Be present in the moment with your loved one. Sing to them, hold their hand, talk about pleasant memories even if they cannot communicate. Listen to what they want to talk about even if it not something you care about.
Give yourself at least 15 minutes twice a day to practice relaxation techniques and do something you enjoy.