The last time you heard from me was two and a half years ago (see An absurd question from October 2019.) Mom has shared lately that it has become much harder for her to keep track of what she has written, and writing itself has become tiring. So when I offered to start sharing more of my experiences as part of Mom’s support team, she was both excited and a little relieved.
It may be hard to believe, but I was actually a bit grateful when Mom’s diagnosis got downgraded (upgraded?) to dementia and then Alzheimer’s. You might expect her previous diagnosis of Mild Cognitive Impairment (MCI) was preferable, but it posed subtle challenges.
Even though the diagnosis of MCI has been in use for over 20 years, 80% of Americans are unfamiliar with the term MCI (according to a recently released annual report by the Alzheimer’s Association). And even when it was described to them, most people said it just sounded like aging. So when Mom got this diagnosis ten years ago, it didn’t really help us navigate the realities of daily life.
MILD – Not so mild
To me, the term “Mild Cognitive Impairment” seems inherently misleading and nonspecific. It did not feel mild when Mom couldn’t remember where items were kept in her kitchen—the kitchen where she’d made hundreds of loaves of bread and hosted countless family meals since they built the house in 1987. It did not feel mild when Mom couldn’t remember how to navigate to my house—the same house we’d lived in since 2002. It did not feel mild when Mom resigned as a volunteer on the boards of the Great River Shakespeare Festival and the Winona Area Hospice. And it didn’t feel mild when I realized that Mom’s usual wise counsel on parenting or relationships had become less logical and nuanced.
In 2012, when any of us shared that Mom had recently been diagnosed with MCI, we usually had to explain that it is short for Mild Cognitive Impairment. Even after we offered a short definition, most people latched on to the word “mild,” and seemed reassured that it wasn’t too serious (meaning: not dementia or Alzheimer’s). If they did understand the potential implications, they responded with some variation of: “But she seems fine.” She was fine…in most situations…most of the time.
In these conversations, I would hesitate to point out the ways MCI was affecting Mom, because as we age most of us experience similar “mild” symptoms. I could see that even when I tried to explain, it wasn’t just one symptom—or the frequency of a symptom—but the whole constellation of aging-type symptoms and frequency that made this more than typical age-related memory and cognitive changes. The result of this mismatch between the language and the condition was that people thought I was being overly sensitive in putting a label on her condition.
COGNITIVE – But memory too
The word “cognitive” is problematic too. In the early years for Mom, the “cognitive” showed up more as memory or word choice glitches rather than with thinking or judgement. For example, Mom was telling the story of my birth to the grandchildren and explained that I had been breech. While my birth did have an unusual presentation, it was not actually breech. Her mind had remembered the birth was complicated, but had filled in the missing memory with a different complication.
Mom has always been a masterful storyteller and through much of this journey from MCI to Alzheimer’s, she has maintained that ability. When friends pay her a visit, the conversation “in the moment” unfolds fairly naturally. Unless someone is very familiar with the details of Mom’s life, most of the time the cognitive part is invisible to others.
IMPAIRMENT – Significant is subjective
The third aspect of MCI, “impairment,” is harder to pin down. Part of the MCI definition is that the symptoms do not significantly affect day-to-day activities. What is significant and troublesome for one person might be insignificant to someone else. For example, the fact that Mom could not reliably manage her medications was not a significant issue on any given day because over- or under-dosing would not put her life in danger. For someone on more potent or essential medications, it would be much more significant if they miss or double a dose. So on a day-to-day basis, medication management was affected but not significant. But if she had needed to be hospitalized for any reason, not knowing when she had taken her medications last could have been important.
The doctors emphasized the fact that each year only about 10-15% of people with MCI go on to develop some form of dementia, including Alzheimer’s. While that means 85-90% of people with MCI don’t progress to dementia in any given year, I needed more than statistical reassurances. As we tried to figure out for ourselves what a diagnosis of MCI meant, I turned to the internet. I wasn’t particularly concerned about where the journey might end, but I wanted to get my bearings on where we were in the forest and what to keep a lookout for.
I landed on two resources which have continued to be helpful in orienting myself to the symptoms, regardless of what the official diagnosis has been. Dementia Care Central provides several rating/staging scales for dementia and Alzheimer’s symptoms. These allowed me to highlight the symptoms we were seeing, sometimes feeling reassured that Mom was still in mild to moderate categories, and other times frustrated because the symptoms seemed to be well beyond MCI.
These scales also provided a uniform tool for my dad, my brother and me to step back from our emotions and look at the symptoms objectively: This is what is happening…these symptoms are more frequent…there are more symptoms in a new stage…do we need to make any adjustments to the support plan? Then, when I would go to Mom’s doctor appointments with her and Dad, we were all on the same page.
Once I have a better understanding of where we stand, I like to formulate a basic plan for right now, and then spend a little time considering options for if things get worse. The Alzheimer’s Association website has a wide variety of resources for individuals and caregivers for MCI through Alzheimer’s. It has especially helpful information on MCI as part of the dementia continuum, and the special supplement to their annual report validates many of the challenges that our family has experienced with an MCI diagnosis.
ALZHEIMER’S – More familiar than MCI
Now, when we share that Mom has officially been diagnosed with Alzheimer’s, people are more likely to assume that her symptoms are worse than they are. They have a better understanding of what the journey may look like. They understand that Mom will continue to decline. And now I get to point out the ways that Mom is doing better than they assume: she still knows who all our close family members are, she can still carry on a conversation “in the moment” and asks appropriate questions, she still enjoys working in her flower beds and tending her houseplants and pets, and she still makes a difference by writing openly and honestly about her experiences so others don’t feel so alone.