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No Place Like Home
Photo: Scott Griessel
Most people with Alzheimer’s disease have a strong desire to live in their homes as long as possible. Families share this desire. Paradoxically, the home is often the best place and the worst place for Alzheimer’s care.

The major benefit of home care is that the care is provided in a familiar place by familiar people. Routines can be maintained, your family member can still enjoy his favorite chair, wear all her favorite clothes, play with the cat or dog, and feel safe and secure. The person who is able to live at home can still be part of the neighborhood and larger community and is more likely to see old friends and relatives.

The major drawback is that the care that’s most often provided is by the spouse, which is demanding and emotionally stressful. While the difficulties are many, including asking for help and coping with changing roles and relationships, there are some ways families can embrace having a loved one at home. Caregivers who isolate themselves are bound to have more difficult experiences.

Common emotions and feelings of persons with Alzheimer’s include loss, isolation and loneliness, sadness, confusion, worry and anxiety, frustration, fear, paranoia, anger and embarrassment. Considering the needs of these important people and their caregivers, here are some ideas for caregivers to consider:

Be open with others about your family situation. Sometimes because we are ambivalent about our own feelings, we don’t want to “bother” others with our concerns, or it’s difficult to say we need help, so we quietly go about our days without sharing clear and direct information about our circumstances. We don’t know what support we are missing, and we isolate ourselves rather than letting others in.

Make an honest assessment. It’s important to have realistic expectations about the person and oneself and to review these expectations often.

Continue to be a part of the community. It’s important to let a loved one enjoy routines as long as possible. Going out for breakfast, enjoying a concert, taking a daily drive, going to church and doing things outside the house are important. Creativity is a key here. If the restaurant is too crowded, the church service too long, consider altering the time and length of stay. It’s also helpful to let the restaurant staff and fellow worshipers know of the diagnosis so they can extend extra support.

Recognize that some patterns and rituals may change. Many hold on to the standards of how a household should be run. It’s not possible with the onset of dementia. One caregiver shared that she began to think of her husband as a “welcomed house guest” and determined to treat him as she would a visitor, with patience and kindness rather than with sharp words and admonitions.

Simplify the environment. Part of the knack of good Alzheimer’s care in the home is to simplify the household. If the person struggles with decisions about what to wear, clear out the closet, and offer just a few choices. If the person has poor judgment, put valuable and breakable collectibles away.

Value and focus on the present. Try to let go of past differences. As a result of this disease your loved one has forgotten these bad times.

Turn busy work into real work whenever possible. If your loved one can still sweep the floor, rake leaves or fold the laundry, incorporate tasks into the day’s routine.

Enjoy quiet moments and simple pleasures. A morning cup of hot tea, listening to music, sitting out in the warm sunlight can be enjoyed by both the person and the caregiver.

Don’t wait too long to take advantage of community resources and services. Families often wait and wait to use needed services. Finally, when the family member has deteriorated beyond the family’s ability to provide her with good care, they seek help.

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By Susan E. Murray. Reprinted with permission from the Lake Union Herald, July 2008. Copyright © 2008 by GraceNotes. All rights reserved. Use of this material is subject to usage guidelines.

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