American Hospice Foundation, Washington DC, USA

Alzheimer's Disease and Grieving Caregivers

By Helen Fitzgerald, CT

Because I have observed it in close relatives, Alzheimer's disease is my dread disease. I remember when I first realized that I was losing the mother I knew. She had a playful sense of humor that would sneak up on you when you least expected it. One day when I was visiting her in the nursing home, she took her cane and pushed it into my foot. I thought she was trying to be funny. But when I looked into her face, I saw that she was not smiling. She meant to hurt me. It was the first of many "little deaths" that would follow.

When someone we love develops Alzheimer's disease or any form of dementia, we experience a series of losses. The person we knew so well becomes more like a stranger. What is most painful is that we become strangers to that person -- no longer recognized as daughter, son or spouse. These kinds of incremental losses cause in us two kinds of grief at the same time. The immediate grief that comes with the many losses accumulating as the dementia advances is accompanied by anticipatory grief that is due to our keen sense of the inevitable death ahead.

Dr. Elisabeth Kübler-Ross, the pioneer of grief therapy, referred to anticipatory grief as the realization that a loved one's life is starting to slip away. Whether this stems from dementia or some other condition, there can be many little deaths along the way. We grieve as we see the person we love contribute less and less to the life of the family and to society at large. In the case of dementia, it is particularly sad to see the person's mind, once sparkling or even brilliant, seemingly turn to mush.

Anticipatory grief brings the same denial, depression, anger, panic and physical symptoms that are common in grief after a death. Professionals working with families might find it useful to introduce the idea of anticipatory grief because failure to understand this common reaction can leave family members feeling unnecessary guilt. It helps to know that it is normal to be angry, tired, cranky, scared and constantly on edge, possibly even wishing for a loved one to die. It is normal to feel relieved when death finally comes, after months or years of torment and disarray. It is not something to feel guilty about.

Alzheimer's disease affects just one mind. Yet, it affects the whole family for extended periods of time. I know of an older woman who is showing signs of dementia, while the husband is struggling with the challenges of everyday living. He feels trapped in his caregiving role, despite his love for his wife. If he leaves the house for an hour, there is no way of knowing what she might do or where she might go. He feels his life is at a standstill. The warm and close relationship they once had is gone. He sees his role as a caregiver as a thankless job, rewarded not with appreciation, but with constant complaints from his ailing wife. He has confided that he prays she will not wake up one morning and die in her sleep. Yet, he is not ready to consider a nursing home, waiting instead for the day that she doesn't know him anymore. That may well be soon. The other day she looked at him and asked, "When is my husband coming back?"

On a trip back home to visit elderly relatives, I was sitting with a family friend who is suffering from advanced dementia. I attempted to explain to him whose daughter I was, but I could tell by his blank stare that he didn't have a clue. So, instead of talking about myself, I backtracked into his past. Remembering that he had served in the army during World War II, I asked him questions about the war, which countries he had been in, and how that whole experience was for him. I saw a light come into his eyes and, for the first time during our visit, he looked directly at me and began to speak. He couldn't remember everything but he was interested in trying to recall those times. As I was leaving him, I glanced back and saw that he had wheeled himself close to the screen door and was watching me leave, banked on both sides by his dogs -- his constant companions. I sensed that I had given him a gift of the moment, reviving briefly the person he used to be.

A study published in the July 2003 proceedings of the National Academy of Sciences found that the stress of caring for an Alzheimer's patient at home can prematurely age the immune system, placing caregivers at risk of developing a number of age-related diseases. Professionals should be aware of the age and health of the family member caring for an Alzheimer's patient and impress upon caregivers the importance of taking care of themselves. It may be helpful to divide the caregiving responsibilities among multiple family members, friends or neighbors. If the caregiver is elderly and the only one available for the task, someone needs to make a daily check, by phone or in person, to see if everyone is okay.

I know of a tragedy that might have been avoided with such a call. A caregiver devoted to his Alzheimer's-afflicted wife had a heart attack when he was alone in the house with her. Not comprehending what was happening, she later told me that she assumed he had decided to sleep on the floor! His body lay there for several days before he was found by the police.

Family members and professionals should continuously inquire about the needs of caregivers by asking lots of questions: How are you feeling today? Are you eating all right? Do you get enough sleep? Do you get out once in awhile? Do you need more help? Hear them out as they talk about the trials and tribulations of living with the Alzheimer's patient. Be reassuring and encouraging because they need verbal support, as well as physical support. Whenever possible, encourage them to participate in support groups to share their experiences with others. Help them find friends, relatives, or paid helpers who can "baby sit" when support groups meet or groceries must be purchased.

The most difficult decision is often near the end of life and is when hospice may be appropriate. To help family members understand when hospice is appropriate, local hospices are available for consultations. Consult the Yellow Pages for hospices in your community or go to Hospice Search for further search options. Reading materials are also available, including a booklet entitled Alzheimer's Disease and Hospice. For further reading contact:

Alzheimer's Association
225 N. Michigan Avenue, Suite 1700
Chicago, Illinois 60601-7633
http://www.alz.org

This website, sponsored by a national voluntary health organization, contains advice for caregivers and abundant information on resources of all kinds related to Alzheimer's disease.

Alzheimer's Disease Education and Referral Center (ADEAR)
National Institute on Aging
Bethesda, MD 20892
http://www.alzheimers.org

This comprehensive web site is a source for current Alzheimer's disease information and resources from the U.S. Government's National Institute on Aging (NIA).

© 2003. American Hospice Foundation. All Rights Reserved.
www.americanhospice.org

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