Jun 8, 2018

Grief and the Emotional Evolution of the Alzheimer’s Caregiver

As I reviewed descriptions of the stages of grief, I realized that Alzheimer’s and dementia caregivers may go through them as well.

The five stages of grief.

Elisabeth Kübler-Ross was the author of the groundbreaking book On Death and Dying, in which she laid out her theory of the five stages of grief.

They are denial, anger, bargaining, depression and acceptance.

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By Marie Marley
Alzheimer's Reading Room

As I reviewed descriptions of the stages, I realized that Alzheimer’s caregivers may go through them as well. I realized that having a loved one living with Alzheimer’s is a kind of death in and of itself.

Our loved one is never coming back as he or she was before the disease struck. And through experiencing the stages of grief we may finally come to accept this reality.

According to Grief.com, people often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another.

We do not enter and leave each individual stage in order. We may feel one, then another and back again to the first one. The stages are not always felt in the order listed. Furthermore, not everyone experiences all of the stages.

Let’s look at each stage, as they are described on Grief.com. You may be surprised at how perfectly they describe the feelings you are experiencing as a caregiver.

“Denial is the first of the five stages of grief. We are in a state of shock and denial. We wonder how we can go on, if we can go on, why we should go on. There is a grace in denial. It is nature’s way of letting in only as much as we can handle.”

Hundreds if not thousands of articles have been written about denial in the Alzheimer’s caregiver. It also extends to friends and family members of the person with Alzheimer’s. It’s universally agreed upon that denial is the first stage one experiences when a loved one begins showing sign of the disease. It can last for months or even years.

“Anger is a necessary stage of the healing process. It can extend not only to your friends, the doctors, your family, yourself and your loved one who died [substitute ‘loved one with Alzheimer’s,’] but also to God. It is natural to feel deserted and abandoned.”

Anger is common among those who have finally recognized the fact at their loved one has Alzheimer’s. It isn’t unusual to be angry at the person and at God for letting the person develop this disease in the first place.

“Bargaining may take the form of a temporary truce. ‘What if I devote the rest of my life to helping others? Then can I wake up and realize this has all been a bad dream?’ We want life returned to what is was; we want our loved one restored.”

Bargaining may be less common among Alzheimer’s caregivers than occurs when there has been an actual death. However, it is usual for us to want life returned to its former state and want our loved one restored to his or her former condition.

“Depression feels as though it will last forever. We withdraw from life, left in a fog of intense sadness. Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. To not experience depression after a loved one dies would be unusual and unhealthy.”

A long period of depression inevitably occurs when you are caring for a person with Alzheimer’s. And, as stated above, it feels like it will last forever. Depression is a normal part of grieving the loss of the person as he or she used to be. It’s depressing to realize the person isn’t going to get better.
That the person is never coming back.

“Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our loved one. We may, however, start to reach out to others and become involved in their lives. We invest in our friendships and in our relationship with ourselves.”

We must strive to achieve a state of acceptance although some caregivers are never able to do so. Again, it may take months or even years to reach this emotional state. It is only when we achieve acceptance that we begin to reclaim our lives, to go on in the face of the difficult fact that our loved one has Alzheimer’s.

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I hope this article will be of some help to those experiencing the loss of their loved one as he or she was, and that by allowing yourself to experience the stages of grief, you may finally reach the stage of acceptance and going on with your life while still dealing with your loss.

Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy

Her website ComeBackEarlyToday.com contains a wealth of information for Alzheimer’s caregivers.

She is also the co-author (with Daniel C. Potts, MD, FAAN) of the forthcoming book, Finding Joy in Alzheimer’s: New Hope for Caregivers.

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