What’s it like for Dad, I’ve often wondered. Is he frustrated, trapped in a body with a malfunctioning mind? Does he understand that he is deteriorating? Did he, at the beginning?
Would I know, at the beginning, if I were to develop Alzheimer’s? I don’t want to suffer with a dementia; could I create a way out for myself now, in the event I lose my mind later?
That was one of the main character’s thoughts in Lisa Genova’s heartbreaking/inspiring/terrifying novel, “Still Alice.” A neuroscientist, Alice Howland develops early-onset Alzheimer’s disease. (The paperback, published by Pocket Books, sells for $15.)
It’s a compelling question: What is it like to have dementia?
So when I got an email from WebMD with that subject line, I had to read more.
Writer R. Morgan Griffin does a good job of explaining how caregivers help themselves, and their loved one, by understanding what the disease is like for the person who has it. An excerpt:
Some people think of memory loss superficially, as merely forgetting words or names. But it’s much more profound than that. Everything we do is premised on memory. When you walk into the kitchen to make dinner, your actions are almost unconscious. You grab food from the fridge, turn on the oven, take out plates and silverware – your memories are a foundation, and they give you a context for what you’re supposed to do in a given situation.
For a person with dementia, that context is ripped away. A woman with Alzheimer’s disease may walk into a kitchen and have no idea why she’s there or what she’s supposed to be doing. She might still be able to make dinner – especially in the early stages of the disease – but it’s a struggle. Each step has to be reasoned out and thought through. That’s why people with dementia tend to act more slowly than they once did.
The rest of the article is full of additional observations and explanations. Read it, and you’ll find yourself saying, “so that’s why my Mom does…” or “that explains why Dad did…”
Understanding dementia from a patient’s point of view can make caregiving less frustrating. Knowing the patient personally is important, too.
We fretted over how to convince Dad that he needed to live in a memory care facility. Stubborn and independent, he was unlikely to admit he needed help, that it was for his safety. Tell him he had dementia and he’d appear quietly stunned–and you could not tell if he was processing the information, angry about it, or considering what those words meant. But he was still Dad.
The facility we were considering, Silverado, had a calendar of events planned for the residents, and one of the outings was to the State Fair of Texas. Since Dad had run the midway there for years, we figured that would be an ideal day for Dad to visit Silverado. He knew Silverado was for people with various types of dementia, and he knew the residents would need help getting around the fairgrounds. He found a purpose in acting as their guide. Soon he began believing Silverado was where he worked–he returned home in the evenings to sleep at first–and the staff kept him busy stuffing envelopes and such. When I’d call, he answered the phone as he always had answered his work phone: “Cleveland Smith, may I help you?”
It broke my heart. But, I recognized Dad had found a way to cope with his diagnosis. So had we. We joined reality with his reality, and together we were understanding what it is like to have dementia.