I recently led a seminar on the subject of caregiving to chronically ill persons. Of course because of my experience, Alzheimer’s disease was foremost in my thoughts. I met Clara who openly shared what so many caregivers feel or have felt.

Clara was absorbing everything I said and what others contributed.  But she kept looking at her watch. When I talked with her, I learned how confined, stressed, and desperate she felt. She had allowed herself to get bound up in dutiful sacrifice which included being with her husband twenty-four hours a day. He had Alzheimer’s. She had allowed herself to come to the seminar because somehow she could justify it, even through her husband had complained – even cried – when she left home.  A friend was with him, but Clara had limited her time away to three hours. 

Unfortunately Clara is not an exception.  Caregivers experience a grueling work routine, social isolation, and ambiguity and grief for their losses. Doing things for themselves in any form seems to produce feelings of guilt. Can these feelings and situations be avoided? Not entirely, but strategies for coping are essential if a caregiver is to remain healthy. During the seminar I listened to others make heartfelt suggestions to Clara; the experience was moving.

Following are a few suggestions for Clara and all Alzheimer’s caregivers:

1.   Accept that Alzheimer’s disease takes your loved one from you in subtle, incremental losses.  You did not choose or cause the loss, nor did your loved one.  But a new reality now defines your life, and an unfamiliar road must be traveled.  You cannot travel it alone. 

2.   Find a confidant, one with whom you can be open and honest.  You can feel enormous relief and support when you are able to share, without regrets or guilt, that you are angry and afraid because of uncertainty and unremitting stress. 

3.   Recognize that there is something different about Alzheimer’s disease.  A loved one is fading before your eyes; the reel of life experiences is broken. In an instant moods change.  At first, you share with one another the sorrow of changes taking place.  In time, the companionship is obliterated by strangeness, negative personality transformation, and mental suffering.  Your caregiving task is different; it is accomplished in the wide barren terrain of uncertainty.  There is no clue about its duration.  And, you grieve -- constantly.

4.   Start thinking about yourself in new ways. 

·         You are taking care of the loved one, but you must also take care of yourself.

·         You are grieving, but you will let in the joys that come your way. What brings you joy? Own these things, even though you see little joy in your loved one’s experience.

·         You are a caregiver, but you are still a mother/father, sister/brother, family member. Who are these family members and how can they help? What are their skills? Everybody’s role will change in some ways during the long journey.  Who does what well? Where are the conflict pitfalls? What family events can be handled by others? Which can be suspended? It’s time to allow the family contour to be reshaped; reach out to anyone who can help. Be willing to relinquish some tasks you once thought essential or unique to your skills. Receive help willingly and often. 

·         The tasks of caregiving belong to the entire family. Share information and expectations within the family, including children, teens, and other adults.

5.   Search out community resources: adult day care, in-home services, support groups, church groups, and ultimately care institutions available to your family.  The local Alzheimer’s Association is a primary contact for your search.

6.   You frequently face hopelessness in your loved one’s descent, but you can find hope in medical science, your family and community resources, your faith, and your own will to finish well.