DIMENSIONS Summer 1998


Note: Each issue of Dimensions features a contribution from one of; the AIzheimer's groups in Washington. This article is reprinted with; permission from the AIzheimer's Association Eastern Washington Chapter.

Caregiver stress is caused not only be the daily demands of giving care but also by the continuous losses experienced. Grief is the normal and healthy reaction to loss. A caregiver involved in the activities of caregiving (feeding, bathing, and housekeeping) doesn't have time to I acknowledge, much less grieve, the losses he or she experiences. This causes stress. This is the conclusion of an article by Marge Dempsey, RN, BA, and Sylvia Baago, MA, published in the March/April 1998 issue of The American Journal of Alzheimer's Disease. The title of the article is "Latent Grief: The Unique and Hidden Grief of Carers Of Loved Ones with Dementia".

Consider this example: John cares for his wife Mary, who has mid-stage dementia. John begins the day by preparing breakfast and helping Mary to eat it. Then he lays out her clothes and assists her in bathing and dressing. He then directs her to an activity she enjoys. He goes to the garage to enjoy his hobby of making birdhouses, only to find Mary shadowing his every move. This is physically and emotionally stressful caregiving, especially when we count the losses John is experiencing. He has lost the wonderful breakfasts Mary used to prepare, as well as a companion with whom he can read the paper and share the news of the day. He has lost his well-dressed wife who took pride in her appearance. He has lost the seamstress who enjoyed her hobby of creating beautiful quilts. He has lost the time to pursue his own hobby. These are real losses, each requiring time to grieve. Instead, John must go on with the day, taking Mary for a drive, grocery shopping, cooking, cleaning... As pressing everyday chores demand that he ignore the losses, and the grief they require, he unknowingly adds to his stress.

The feelings of guilt, anger, anxiety, depression and helplessness, usually associated with the burden of caregiving, are also identified with grief. This grief is not just about anticipating the eventual loss of the loved one. It is about the very real loss today of a partner, friend, parent or grandparent. The loved one can no longer fulfill these roles. It is about the loss of dreams and expectations, and it is about the caregiver's own loss of identity.Any one of these losses would make a person stressed. Combined they can overwhelm, especially if they go unacknowledged by the caregiver and/or support system.

The beginning of a solution is as easy as reading this article: understanding that the problem exists. If a caregiver can acknowledge his or her losses and lament them, he or she has begun the grief process. If friends and family recognize and acknowledge the dynamics of the losses, the caregiver will feel supported and able to express his or her sorrow. Support groups are a great place to discuss and work through this difficult issue. Contact the Alzheimer's Association National Chapter at 1-800-272-3900 or the Western and Central Washington State Chapter at 1-800-848-7097 to locate your local support group. Remember that your local chapter maintains a Helpline, which all caregivers may call for support.

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