by Myra Marcus, Ph.D
Lucy entered my office visibly upset and crying, saying that she had lost her sister Bernice.
No, she hadn’t died, but the woman Lucy knew all her life was no more.
Bernice lived out of state. Lucy visited several times a year, usually around holiday time, and always stayed with Bernice. The visits usually culminated with a large family gathering, and during the most recent of these, Lucy says she was setting the table, very carefully because Bernice was particular about how she wanted things to look.
All of a sudden, Bernice was livid. “What are you doing?” she yelled, loudly accusing Lucy of moving a dining room chair to another spot at the table.
Lucy just looked at her sister in disbelief.
“Get out of my house!” Bernice screamed.
Lucy ran upstairs to pack her bag. Bernice followed, shrieking all the way. Lucy immediately left the residence, frightened and confused, and vowed never to return. This unfamiliar harridan was not the sweet sister she had known all of her life.
So what happened? How do we explain this bizarre turnaround?
Other than some confusion and memory loss, Bernice seemed to be fine. Sometimes she had trouble finding her way around and her reasoning seemed a bit impaired at times, but she looked well enough. But when Lucy followed up with Bernice’s daughter-in-law, she learned that her sister’s cognition problems ran deeper. Bernice was having difficulty managing some of simple activities of daily life, like bathing, toileting, dressing and grooming — complications that often signal the kind of progressive brain deterioration evidenced in Alzheimer’s disease and other dementias.
For someone experiencing this, it is quite literally like losing your mind. People are conscious of their diminishing cognitive faculties, but they become increasingly incapable of expressing their basic needs and often resort to primitive means of communication, such as screaming and hitting. They feel embarrassed, frustrated and angry over their inability to handle simple tasks and activities. Frustrations with their newly limited capacities lead to suspicions and paranoia about the intentions of the people around them, all of which only serves to further isolate the affected individual. Violent reactions become commonplace and are never more than one frustrating moment away from breaking loose.
Reactions to these situations vary greatly from person to person, but in some instances a task as simple as taking a bath may prove to be too complex and overwhelming. People with dementia may also have other medical, physical and emotional problems that should be taken into consideration. We try to wait patiently for the person we knew to return, but it may be a lost cause — troubling behavior may be just the beginning of a long cruel decline.
In the meantime, coping with difficult behavior requires good communication and problem-solving skills. Here are some suggestions:
- Always try a calm, gentle approach. Speak in a warm, easy-going manner keeping the pitch of your voice low. Remember, you set the tone for the interaction.
- A gentle touch may be reassuring and communicate that you care even if your words are not understood.
- Don’t argue — it will only make the situation worse. Ignore a verbal outburst. Don’t get drawn into the fray.
- Distraction can be helpful when communication isn’t working. Taking a walk, changing the subject, turning on the TV may help diffuse tension and distress.
- If you feel physically threatened, stay out of the person’s reach, leave the scene and call for help.
- Always have an emergency plan for yourself just in case. For example, get an emergency alert button or know which neighbor to call in a pinch.
- Try to take notice of any triggers that cause an outburst. Look for patterns to the behavior: when (time, what happened, precipitating event), what (emotion expressed), where (location of the flare-up) and who was involved.
- Do not take this behavior personally — this is someone with organic brain disease.
Lucy has sought counseling to help her understand her feelings of loss and learn to accept Bernice’s illness. She is working on strategies that will support her sister as well as protect herself for when she goes back to visit this holiday season. Bernice is still there — she is just different, through no fault or choosing of her own.
Myra Marcus, Ph.D, is a clinical social worker with Family Centers, one of Fairfield County’s largest providers of human services, counseling, health and education programs. With offices in Greenwich, Stamford, Darien and New Canaan, CT, Family Centers is a United Way, Community Fund of Darien and New Canaan Community Foundation partner agency that offers counseling and support programs for children, adults and families. Family Centers is also affiliated with the Community Fund of Darien. For information, call 203-869-4848 or visit www.familycenters.org.