Taking Care of You: Grief and Self Care

When a person has dementia, they change. They lose the ability to communicate. They lose their personality. They lose the ability to express physical intimacy. They lose the memories of who they were, and they forget who you are.

The care partner loses the person they loved. The care partner loses the relationship, the two-sided give and take that made you parent and child or husband and wife. The care partner may also lose the companionship and reassurance of having a partner and, sadly, may lose friendships with others, too.

Anticipatory grief is the act of mourning when a loved one is expected to die. It is also mourning the loss of so much of the relationship that you used to have.

Anticipatory grief sounds like such a formal way to say, “My Mom isn’t who she used to be today, she will be someone different next week, and she will never be how she was when I was growing up. That makes me very sad!”

(Source: Obtained from Dementia Caregiving 101 - Anticipatory Grief, 2016)

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Emotional Impact of Anticipatory Grief

Grief is a natural human experience we all feel with loss. While most people associate loss and grief with death and dying, for persons with dementia and partners in care, loss and grief become a significant part of life.

Watch this video to learn about the range of emotions and reactions that may be experienced during grief.

In addition to these emotional losses, there may also be the loss of income, the loss of privacy, the loss of space, and the loss of time.

All these losses occur long before the person with dementia actually dies. They occur at a time when the care partner is facing long, tiring days. At a time when the care partner must meet their own mental, physical, emotional, financial, and spiritual needs and those of the care recipient.

The work is exhausting. And just about the time you adjust to Mom having forgotten the word for “fork,” she forgets how to use a fork. And you must adjust again.

( Source: Obtained from Dementia Caregiving 101 - Anticipatory Grief, 2016)

Click on the image below to download and print a copy of the Alzheimer Society’s resource, Ambiguous Loss and Grief in Dementia: A Resource for Individuals and Families. This resource is meant primarily to help care partners gain a better understanding of how loss and grief can affect you and the person with dementia. It also provides valuable information to help people with dementia deal with their own losses and grief and live as well as possible with the disease.