A friend of mine told me a story that illustrates some of the most important understandings about how to care for a person with dementia.
He was a middle-aged man whose mother was under professional care in a memory care community. For her 85th birthday, he wanted to bring her joy by going all out with a catered private dinner. He, his wife, and his adult daughter arranged to use a private dining room at her community, and bring in a fine meal, served on fine china.
As they smiled under the candlelight with pride in the gift they were giving her, they got their first hint that things were going wrong. The mother said, “It sure is taking Stan a long time to park the car.” Stan was her husband, and he had been dead for more than ten yours. The family was stunned. Why had she said this? Later, the son realized that when the family went out to eat in days past, it had been the routine for his father to drop everyone off at the restaurant, park the car, and then join them inside.
Of course, Stan did not show up that evening, and before it was over the mom was distraught and highly agitated. “Do you suppose he’s been in an accident? He should have been here a long time ago,” she kept saying. She demanded that her son go look for his father, and became violently angry when he tried to explain that it wouldn’t help. She refused to eat, nor could anyone else because they were expected to wait for Stan. What was planned as a wonderful family evening became a total disaster.
What does this story of good intentions and unintended consequences teach us? First, as caregivers, we must understand that the demented person’s reality is nothing like ours. Caregivers frequently do things to try to bring the patient into “reality.” Go to a movie or out to dinner, possibly at a very noisy restaurant that is “fun.”
Only it isn’t fun for the demented person because it is confusing and even frightening. We must try to understand the patient’s reality and respect it. What the son in my story finally began to understand was that his mother had gone to a place in her mind where she was a mid-30s woman married to a still-young husband. This was HER reality.
Believe me; trying to coerce or drag your demented loved one into reality – meaning YOUR reality – is doing them no favor. It can even be cruel. In our example, it would have been so much nicer to bring her a simple cake to share with her friends in the bright light of the dining or common room of their community. This could have been a joyous evening, for all concerned, and she would have been the center of attention in a familiar and safe context.
The second thing to understand in coping with dementia is that routine is the most comforting thing in the patient’s confusing and changing life. Those of us with sounder minds can be flexible and adapt quickly to the unexpected. The dementia sufferer cannot. Our family who gave their mom a private dinner in an unfamiliar room had unwittingly shattered her routine. This alone may have sent her mind back into the past, trying to find an experience that would make the circumstances make sense to her. Unfortunately, those old memories brought only additional pain for the whole family.
And finally, our story is useful in discussing a phenomenon called “sundowning.” Dementia victims become their most fearful and psychologically fragile at the end of the day, as the sun goes down. It is a well-observed and documented phenomenon, and I’ll write more about this in a future column.
As caregivers, we must try to understand and respect the reality of our loved ones. We may call it delusional, but for them it is real and efforts to change it result in confusion and suffering. We must also recognize and try to reinforce their routine. It is essential in helping victims of dementia hold onto the reality they have created and are trying so hard to maintain. It is REAL to them, just as much as your reality is to you.
Until next time remember: “We all deserve the best”.
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