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Finding the Way Home: An Article for Family Caregivers

Norwalk Reflector Staff • Oct 29, 2015 at 11:59 AM

Can you recall how you felt when you were at an outing like the park, a carnival, and the parade? Perhaps you walked a short distance to buy something at a food stand only to realize you might have turned and taken the wrong way. Maybe you experienced it going to the movie theater. During the intermission you went to the restroom, when you came out into the lobby the scene was not the same. It didn't seem familiar. You might have turned and taken the wrong way. You realize none of the scenery looks the same. Some identifying landmarks are not there. The central figure is not there. This is like being away from home. We tend to think of home as being a familiar place. It connotes warmth, a place of comfort and safety and a sense of good things coming from this milieu.

Can you recall becoming uneasy, uncomfortable at first? Tension sets in, breathing may become labored, fear takes hold, and blood vessels are constricting/your heart is pounding. If there is no relief at this time you may experience a feeling of heaviness, depression, then fatigue/even exhaustion. Think back to a time when you may have been lost or separated from something familiar. Did you experience all of these feelings?

By contrast do you recall a calming, a peacefulness and sense of well being? The heart pounding subsides. The blood flow returns to normal for you and breathing is restful when you found your way to that which was familiar or were found by that person who was familiar to you.

The correlation between the scenario described and a love one going through the various stages of Alzheimer's disease will lighten the pathway for those who will be involved in the care to help such a person find their way to that which is familiar, comforting and safe. We often identify this place as home. To the person with this illness, it is all of those things put together that he or she has identified as "home".

What then is Alzheimer's disease and how does it correlate with loss? Alzheimer's is an irreversible degenerative disease that causes changes in brain tissue causing impairment in behavior, thinking and memory in progression in a large population of mature citizens. As it progresses there is loss of function. During the initial or first stage leading up to and including the diagnosis, the individual begins to experience memory loss associated with confusion. It causes some people to become upset and fearful because something is happening to them they can't understand. Many loved ones still enjoy familiarity in their surroundings. This helps to calm and allows some order to their lives. Some individuals still are able to socialize. They like the camaraderie of family and friends around them.

The second stage usually after the definitive diagnosis is made appears to be the longest stage and where the decline comes. The memory loss and behavioral changes can be in rapid progression. Though this stage is more difficult and challenging for caregivers and family members, the person experiencing Alzheimer's disease can still be reminded of those things that were once familiar and comforting to them. We must take the snatches of opportunity we have by understanding where they may have been. It is all those things together that the person identifies as home. Now the love one may only have snatches of memory, but there are things in their life that can stimulate feelings of something familiar and pleasant. These feelings can be emitted through sounds, sights, smells, touching and even taste. Quiet, pleasant conversation, being read to and listening to music can be calming and peaceful activities. The milieu must be tranquil, quiet and an orderly pace because of the mounting confusion, fearfulness, agitation and rapid mood swings during this phase.

In each life a person has things that they have enjoyed; found relaxing, comforting and experienced a sense of well being. I would include some of these things in helping that individual find their way home.

During the last stage the memory may have all but faded. Communicating with words is gone. The love one may be bed bound now; others may need assistance with ambulating. There may be longer periods of sleep than before.

It has been stated in the medical community that of all the senses, the sense of hearing remains the longest. Then the effort to help the love one in the journey to home should be centered around those things that will be tranquil, restful and peacefully stimulating.

Joyce A. Brown, RN, AAC

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