Self-care key to effective caregiving
Survival skills needed to cope
When family members assume the role of caregiver for a loved one with Alzheimer’s disease, they must do more than learn to care for the patient. It’s also important that the caregiver learn survival skills and ways to cope with the effects of the disease on everyone involved.
"Caregivers think they must dedicate most of their time to taking care of the loved one. They don’t realize that they have to take care of themselves first in order to be there for the individual with the disease," says Kara Albisu, MSW, director of quality care initiatives for the Alzheimer’s Association in Chicago.
That means carving time out for themselves throughout the week in order to stay healthy — both mentally and physically. To do this, caregivers must learn to seek and accept help from family, friends, and formal services that are available in their community.
Caregivers should educate friends and family so they are comfortable interacting with the person who has the disease and can give the caregiver a break. In addition, caregivers should seek out adult day care facilities and respite care services.
Upon diagnosis, the caregiver should immediately contact the local chapter of the Alzheimer’s Association, advises Albisu. It offers a help line for quick information, referral assistance, and emotional support. The association also has a variety of support groups for caregivers, family members, and people in the early stages of Alzheimer’s.
Support groups allow caregivers to examine their feelings. Most caregivers go through stages of bereavement that include denial, anger, bargaining, depression, and then acceptance, says Sandra Fong, MS, administrator at Gramercy Court, a health care residence with an Alzheimer’s unit in Sacramento, CA.
"We go through these stages of loss with many things. If a person loses a wallet, he or she might deny it’s lost or get depressed, but eventually accept the loss and move on," she explains. It’s good for the caregiver to understand that these feelings are part of the bereavement process and can be worked through. At support groups, those who have gone through the experience can validate the the caregiver’s feelings.
Guilt is another feeling caregivers must cope with, especially when he or she begins to contemplate placing the patient in a long-term care facility. To deal with the feelings of guilt, it helps if the caregiver is very selective when choosing a facility. They should look for a facility where they can be involved in patient conferences to help staff learn about the likes and dislikes of their loved one, advises Fong. (For information on how to choose a facility for an Alzheimer’s patient, see editor’s note at the end of this article.)
Caregivers often reach a point where they are so stressed they never have any enjoyable moments with loved ones. That’s a good time to consider placing the patient, says Albisu. It may be easier to dedicate a portion of the day to the patient if he or she is being cared for in an institution.
"The decision to institutionalize a patient depends on the capabilities of the caregiver and the family as well as the needs of the patient. It is personal and individual because everyone has different thresholds for tolerating stress," explains Albisu.
(Editor’s note: Finding an appropriate long-term care facility for an Alzheimer’s patient takes time. To help a caregiver investigate facilities, the Alzheimer’s Association has prepared a booklet titled "Residential Care: A Guide for Choosing a New Home." The booklet is free and is available at all association chapters. It provides information on what to look for when touring a facility, what types of questions to ask, how many times to visit, and how to make unannounced visits.)
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