EXPERTS

When I first become a caregiver to a person living with dementia, I felt frightened, uninformed, uncertain. I have had a lot of personal and professional experience in health care related matters. And yet, I felt completely unprepared for this new role.

I immediately started reading, relying on experts to fill in my significant knowledge gaps. In fact, both Deena and I became avid readers of books and articles about Alzheimer’s. We actually managed to acquire quite a library of resources. Of course, by the end we joked that we had become more book buyers than book readers.

I also learned to lean heavily on medical experts as I learned to navigate the dementia journey that we had be thrust on. Our primary care provider, neurologist and neuropsychologists offered support and guidance that was invaluable over time.

Testing for a diagnosis dementia may be conducted by a neuropsychologist. Some people never undergo this type of testing. Instead, the diagnosis may be made based on observed behavior and changes over time by a neurologist. In some cases, tests including an MRI or spinal tap may be used to determine the existence physiological changes that are indicative of Alzheimer’s.

In Deena’s case, the original diagnosis and subsequent follow up testing was done every 12 to 18 months by a neuropsychologist, with regular checkups by the neurologist.

The neuropsychologists that we worked with to initially diagnosis and then track the changes over time were critical to some of my most basic understanding of the disease and its potential impact on our lives. I remember that the last thing the neuropsychologist said to me after she told us that the results of Deena’s testing indicated early stages of Alzheimer’s was, “Choose your battles carefully.” In the moment, I didn’t know the significance of her words, but her advice quickly became a mantra for my decisions and actions.

Our primary care provider was a wonderful, caring Nurse Practitioner who provided invaluable guidance over the course of our journey. She suggested practical solutions, supported my decisions and validated my perceptions of Deena’s changes over time. At the end of one appointment, I asked her to watch Deena walk. When she saw how Deena’s gait had deteriorated to a shuffle, her only comment was “I’m so sorry.” That told me all I needed to know.

I wasn’t initially convinced that on-going visits with the neurologist was really worth the effort. Our primary care provider was ordering and following the Alzheimer’s related medications. She also followed Deena’s decline over time, so I wasn’t sure what contribution the neurologist would make to Deena’s life. But I came to change my opinion. Deena’s neurologist was a kind, thoughtful person whose administration of the Mini Mental Status Exam 2 or 3 times a year made Deena feel successful and still gave me definitive information that showed the decline over time.

In every case, these medical experts helped Deena and me feel supported and successful as we walked what became a very rocky road. I truly couldn’t have done it without them.

Over time, however, I recognized the need for a different kind of ‘expert’. As Deena became less able to accurately track and understand information, she became more skeptical of the accuracy of my information. The simplest statement, “Today’s Tuesday the 3rd”, would be challenged. “How do you know? You always think you know everything.”

I knew that those statements are the epitome of “It’s not Deena. It’s The Disease.”, and that trying to explain why I thought it was Tuesday the 3rd was futile and would only result in more agitation and aggression. So, I started using ‘experts’ to bolster my statements. It wasn’t about being right, remember, ‘Being right is always wrong.’. And god knows, I’m not always right. It was about moving the conversation along, getting us to an appointment on the right day and time, or just cooling the temperature in the room down, without disrespecting Deena or diminishing her already low self-esteem even more.

My list of ‘experts’ grew over time. Basically, anyone or anything other than me was an ‘expert’. For example:

• Sue: “Your doctor’s appointment is tomorrow at 3:00.”
• Deena: “How do you know that? You always think you know everything.”
• Sue: *Checks the whiteboard in the kitchen that shows the week’s activities and appointments.* “Yep, it says tomorrow at 3:00”.
• Deena: “Oh, ok.”

Sadly, Deena couldn’t realize that I was the one that had written the appointment date and time on the ‘expert’ white board.

Or

• Deena: “We need to start packing before we have to move.”
• Sue: “Honey, we own this house. We never have to move unless we want to.”
• Deena: “You’re wrong. Why do you think that?”
• Sue: “Ok, let me check with Jason.” *Texts Jason asking if we can stay in the house as long as we want.*
• Sue: *Reads Jason’s reply.* “Jason says we never have to move.”
• Deena: “Ok, if Jason says that then I believe it.”

It makes me sad that our interactions sometimes required what seems like an extreme response. I so wish we could have continued to have the kind of discussions we always had had. A rational give and take, no winners, no losers conversation. And even when we didn’t agree, we hadn’t been disagreeable. We knew how to walk away from disagreements with our self-esteem intact, our relationship stronger for understanding the other better.

But dementia makes those conversations impossible. The decline of cognitive skills is frightening and can leave the person living with dementia fighting to hold onto whatever shred of their old self that they can. The ability to negotiate, compromise gives way to a need for self-preservation in ways that would never have been a part of someone’s basic personality.

So, while this technique might feel manipulative to some, I found it to be a way to create a calmer environment that supported and uplifted Deena’s self-esteem. And isn’t that what everyone wants?