Perception Is Reality

I drive a lot in the course of my work. Our company serves all of Massachusetts and it’s not unusual for me to drive hundreds of miles in a single week.

As you can imagine, I am very dependent on my car. But the truth is, I don’t really know a lot about how it works. Sure, I understand the basics, like everyone else. But if you asked me to explain the specific workings of an internal combustion engine, I wouldn’t get very far.

But you know what? It doesn’t matter. My car works reliably, and that’s all I’m really concerned about.

When it comes to coaching clients and others who are caring for loved ones experiencing dementia, Alyson and I apply a similar philosophy: the outcome is what matters most.

More specifically, the goal should not be to “get mom or dad to behave in a certain way.” Instead, it’s to allow (and even encourage) behaviors that help them be as happy as possible — even if those actions don’t always line up with our expectations.

Two recent examples…

Example #1

Laura’s dad, Edward, who has advance Alzheimer’s, moved into a memory care unit this past November. As a younger man, Edward was always well-dressed and quite particular about his looks. As Laura explained, “He was the kind of guy whose idea of comfort usually involved a three-piece suit.”

On a recent visit, however, Laura noticed that her dad was wearing someone else’s green, jogging pants. Apparently, he tends to wander into other residents’ rooms (as is common with people who have Alzheimer’s) and he will occasionally borrow something. The staff discourages this, but it’s not unsafe and they do make sure things get returned where they belong. No one seemed upset about it.

Except, that is, for Laura. “He’s paying a lot of money. Why is my dad wearing clothes that I know he would hate?”

Simple. Because he’s happy and he’s having a good day. He allowed the staff to provide care without resisting as he sometimes does, he had a full breakfast, and he even participated in an exercise class. As one staff member gently questioned, is it better that they fight him to change his pants, or let him have a pleasant afternoon? The pants fit well, they were clean and Edward was comfortable.

Example #2.

Helen lives in a memory care unit. As is the case with many people experiencing cognitive decline, she is always in search of something that she can’t quite remember. Often, she was seeking a feeling she used to have and was constantly moving. The staff had even begun offering her meals as “finger food,” so she could eat while walking.

One day, Helen was given a lifelike baby doll. She had been a very nurturing woman, who raised six children and she immediately began rocking and caring for the “baby.” So much so that when her son came to take her out to lunch, she became a little agitated and would only leave the doll behind if one of the staff members “kept an eye on the baby.”

Helen’s son was upset. He thought it was demeaning for his mother to carry a doll around. But here as well, this was a solution to a problem. For Helen, the doll brought her back to a place when she felt useful and important. The baby was real to her and she could offer love without needing to use words. She was experiencing the feelings of when she raised her own babies. When she held the doll she would often sit down. She ate better and was far less restless.

Reality vs. Support

It’s hard to watch our parents change, especially under such difficult circumstances. Wearing the “wrong” clothes, carrying a baby doll… these behaviors and many others like them can feel awkward and unnatural to watch.

But it’s not really about us and our expectations — it’s about them and what makes them most at peace. If we can step outside ourselves and put their immediate interests ahead of ours, we can be content knowing we are helping them remain as comfortable as possible in this final phase of life.

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