What should we do with mother?

It started ever so slightly. In the beginning it was barely noticeable, and the family passed it off without a serious thought--an unfinished sentence in a letter, handwriting that seemed to drift off into space along with thoughts. Occasionally she seemed to be surprised when I would appear at her door for a visit after I had called her only a couple hours before to tell her I was coming. Then she began to wander and occasionally get lost. We had to face the issue. Mama was no longer able to live alone.

I couldn't cope with the idea that someone who had given so much to all of us would have to go into an institutional-care setting. My family held a conference, and my husband and daughters agreed with me. Granny would come live with us.

As in our case, many families make a decision regarding the care of a parent from emotion. The guilt of placing a loved one in an institutional setting sometimes is overpowering and obscures what is really best for the parent. However, when families must make the decision between bringing a loved one into their home and choosing alternative care, factors in determining what is "best" must include effects of home care on the parent, on the caregivers, and on other members of the family, as well as the stage of the disease.

SAFETY. Living alone presents many hazards for the Alzheimer's sufferer. In their book, The 36-Hour Day: A Family Guide to Caring for Persons With Alzheimer's Disease, Related Dementing Illnesses, and Memory Loss in Later Life, authors Nancy L. Mace and Peter V. Rabins describe the types of behavior that might be expected:

A forgetful person may not eat or may eat only sweets even when you have provided a hot meal. The person may take too much medicine or forget her medicine. This can make her mental impairment worse and can jeopardize her physical health. Is the person wandering around outside at night? Such behavior is not uncommon and is dangerous. People who appear to be managing well often forget to turn off the stove. A forgetful person may keep her house too cold. May dress too warmly or may be afraid to open the house for adequate ventilation. In the child's home, however, most of these hazards can be prevented.

EMOTIONAL NEEDS. A feeling of usefulness is important to an individual who has always been active in caring for others. Providing this feeling may require a great amount of patience, but there are many things a person with Alzheimer's can do. My mother loved to help with the laundry--folding and putting away clothes. (I found it necessary to watch where she put things in order to retrieve them after she had finished, but she loved doing it.) While my mother could no longer prepare a meal, she could help set the table or dry the dishes. In the kitchen she required constant supervision to prevent injury from sharp instruments or fire, but she enjoyed being involved. It was always evident that helping even in the smallest way improved her sense of well-being.

DIFFICULTIES AT HOME. Despite the best of intentions, the normal lifestyle of even the most loving, caring family may generate an atmosphere that is detrimental to the Alzheimer's sufferer. As we cared for my mother we found there were problems we had not anticipated, especially the effect of our routine family activities on my mother's mental condition. In Alzheimer's: A Guide for Families, Bobbie Hasselbring explains how important it is to "understand that minor excitements can upset the sufferer. Noise, travel, visitors, etc., can cause confusion and irritation." Needless to say, any home with three normal teenage daughters does not provide an environment without "minor excitements" or without visitors. We soon learned that Alzheimer's may bring about drastic personality changes. Mama had always loved the girls. Yet now, many times just with the normal activities around the house, she would become distraught. When the girls' friends would come to visit, it was especially difficult. Her reaction was never predictable. Sometimes she just seemed more confused. Other times there was agitation and accusations. Fortunately for our daughters, their friends were very understanding.

Any decision to bring another member into the household represents changes and adjustments. It is even more difficult when the new member is suffering from dementia. Providing care will affect the primary caregivers as well as other members of the family. As Donna Cohen and Carl Eisdorfer state in their book The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders, "it is hard to provide for the continuing needs of the patient. Although only minimal assistance may be needed in the beginning, problems become more serious with time. Most families are unprepared for the strain of years of caring, and they are caught in a vise of increasing demands and diminishing resources. This is a burden of love, but the enormity of the demands, the stresses, the isolation, and the uncertainty of the future are difficult to bear."

WE NEEDED h BREAK. Whether it was because of the trauma of the move or the typical progression of the disease, my mother's mental condition deteriorated rapidly within a short time after she came to live in our home. She began to have extreme difficulty communicating. Sometimes words could be understood; more often they were just babble that did not resemble meaningful speech. Rarely did we hear a sentence of complete words. Yet during this time her physical health was excellent, and she was very mobile. Constant supervision was required to prevent her from getting outside and becoming lost. Hallucinations were more and more frequent. These were always times of terror for her, fighting some unseen enemy; and times of heartbreak for me, seeing her so terribly distraught. Nights were sleepless. As soon as we would drop off to sleep, we would be awakened by her defending herself from unseen attackers and occasionally even defending herself against some real object such as a lamp.

Much of the time she did not know me. To her I became a split personality. Occasionally I was Joyce. More often she would refer to me as "that other woman" and describe something I had done as "Did you see that other woman do ... ?. She would ask me, "Were you a twin?" or "How do you know so much about my family?" She would become distraught when I would try to explain that I was her daughter, so I quickly discontinued that. Needless to say, maintaining a sense of humor helped. One night when I crawled into bed exhausted, my husband leaned over and asked, "Well, which one of you am I sleeping with tonight?" The importance of a support system cannot be overemphasized.

My husband and daughters were wonderful. Yet despite their best efforts to help, I became more and more exhausted. There is no way of knowing how long I would have insisted my way was "best" if I had not been forced to back off and take a second look. One weekend my husband insisted we all needed a break. Arrangements were made to have a nursing student stay with my mother, and the rest of us went to the beach. After a couple sound, uninterrupted nights' sleep and long walks on the beach, we returned home rested and ready to again cope.

When we returned home, Mama was relaxed, sitting calmly with the nursing student. When she saw us, there was no sign of recognition or happiness at her family returning, but rather a look of pure confusion, as if to say, "Who are these intruders?" This forced me to consider that if she could adjust to a total stranger caring for her, perhaps she could adapt to a nursing home environment.

BEYOND HOME CARE. The transition was soon made, and as difficult as it was for me, I moved her things into her new room with a bathroom right beside her bed. At the nursing home there were other people her age, and there seemed to be an immediate bond. Mama went right to work trying to take care of her roommate. After getting Mama settled and spending a little time to assure myself that she was OK, I went home and collapsed in an emotional heap completely overridden with guilt. Later that day I went back to the nursing home. Mama was completely at ease, and even in that short time seemed more content there than during most of the time she had been in our home.

This certainly is not an attempt to assert that my mother's condition improved. Alzheimer's is progressive. There were still times she knew me and times she did not. The hallucinations continued. But what did change was the frustration and stress in her countenance that we had seen so much of during the time she was with us.

MAKING THE CHOICE. When children must make the difficult choice regarding the care of a parent with Alzheimer's disease, many may fee] that home care is the only solution. They may feel they could never place their parent in a nursing home. Overwhelming guilt, as well as the feeling of total failure at being unable to provide home-based care, may be associated with p]acing a parent in a nursing-care setting. I experienced those same feelings.

But children facing this decision must realize that the criteria for determining the best care for the parent should be neither the level of sacrifice the child is making nor the amount of guilt relief a particular solution provides, but rather the quality of care and benefits provided to the parent. As decisions are made, the stage of the disease must be a primary consideration. Appropriate timing is important.

During the early stages when living alone is no longer safe, bringing the parent into the child's home may provide a temporary solution as well as a helpful transition away from total independence. However, many families who are able to manage during the early stages find nursing home care necessary during the later stages.

In looking back, I can see that my choice to move my mother into our home may have been best for me--it allowed me to know I had tried, and possibly avoided some guilt I would have felt had I not given it my very best. I seriously question that it was best for my mother. A move directly into a nursing-care setting would have allowed her to avoid one stressful move and a lot of stress imposed by our home life. At the time we were faced with these decisions (in the early 1980s), Alzheimer's was not the household word it is today. Very little information was available, and my mother was actually in the middle to late stages before I even heard the word. Today more and more elderly day-care centers are available to assist those who choose home-based care during the early stages. Nursing homes are devoting entire wings and specially trained nursing staffs to meeting the unique needs of Alzheimer patients.

Today there is a wealth of information on all aspects of the disease. Early acknowledgement and acceptance of the disease can help families plan for and cope with the changes that will come.

Home care versus alternative care--what is "best" for the patient? This is a question to which there is no single answer. But with a thorough understanding of the disease, its stages, and its progressive nature, those faced with the question can make informed and loving decisions.

Joyce McQueen writes from Omaha, Nebraska.