ALZHEIMER’S – MEMORY LOSS AND SO MUCH MORE

Soon after Deena’s diagnosis, one of our friends was confused about what the future held.  “How do you die of a bad memory?”

I can actually understand her confusion.  The most commonly understood symptom of dementia is memory loss.  And god knows, that’s certainly true.  But the fact of the matter is that dementia is a neurologic disease with a range of symptoms that ultimately affect the entire brain and all of its functions.

In retrospect, and with a greater understanding of the disease, there were signs of the ultimate dementia diagnosis long before that fateful day in June of 2017.  I recognized that there were problems at the time, I just didn’t understand their significance.

We had a Christmas Caroling party in December of 2015.  It was the most universally loved party that we had ever given.  We served appetizers and cocktails before caroling and dessert and coffee after.  Deena and I made all of the food from scratch for a crowd of about 40 people.  Deena was a fabulous cook.  She owned a catering company at one point in her career.  She was the head chef, I was the sous chef, my apron read ‘Sue Chef’.  We had easily cooked for a bigger crowd many times before.  

But something was off this time.  Deena struggled to follow a recipe.  She became anxious and frustrated with every little thing.  I noticed the change, but just wrote it off to the stress of the holidays.

By the spring of 2016, I was increasingly aware of more changes in Deena.  I mentioned my concern to her son David who immediately asked if I meant if she was having trouble with her memory.  No, it wasn’t her memory.  It was more agitation, less ability to manage stress, increasing frustration with the little bumps in the road.  Again, I noticed the changes, I just didn’t understand what they meant until 15 months later when we got the diagnosis:  the early-stages Alzheimer’s disease.

Some symptoms of dementia can be so subtle that it’s easy to overlook them and write off their significance to other causes:  stress, tiredness, environmental changes.

Difficulty finding words can be a sign of changes in the brain that can occur during the disease process. For many people, this occurs early in the process.  Deena was verbal and articulate well into the disease before she really started having trouble with language.  In fact, she struggled with the idea that she could have dementia and still be so verbal.  She was convinced that people thought she was faking it because she was so able to participate in a conversation.  Of course, that wasn’t true, but facts didn’t assuage her worry.

Executive function is described as the ‘management system of the brain’, required to set goals, plan and accomplish tasks.  Executive function affects a person’s ability to:

• Pay attention
• Organize and prioritize tasks
• Start and finish tasks
• Understand different points of view
• Regulate emotions

Deena’s difficulty following a recipe?  Her frustration at finishing a task?  All indications of decreased executive function skills.

People living with dementia often experience loss of interest in usual activities.  Reading, gardening, sports activities that previously gave the person pleasure become difficult, frustrating, not worth the trouble.  I worried endlessly about how I could keep Deena engaged in life when she was unable to participate in her favorite activities, reading, cooking, gardening.    

Difficulty following conversations is related to a person’s loss of words and difficulty concentrating.  This symptom effects many aspects of a person’s life.  Watching TV or movies becomes difficult and frustrating. Following conversations becomes harder and harder.

During a dementia workshop offered by the Alzheimer’s Association, one woman described how her stepmother often misunderstood something that someone said and then would get furious at the perceived slight.  I could immediately relate to the problem.  Deena would ‘hear’ something that wasn’t actually said.  It was like one set of words would go in her ear, get all stirred up and her brain would send out a different message.  It was so helpful to know that I wasn’t imaging the problem, that it really did exist.

It’s not uncommon for people living with dementia to get lost, driving or walking somewhere.  A decreasing sense of direction can result in the failure to recognize familiar landmarks or follow directions.  The route to the grocery store that has been driven many times is unknown, a walk around the neighborhood becomes a frightening exercise in confusion.

Deena was born and raised in San Diego, so our move to Tucson was a huge change for her.  She always loved maps but was somewhat directionally challenged. I wrote off her inability to navigate through Tucson, even 15 months after our move, to this issue.  It was only after her diagnosis that I realized that she didn’tknow where she was because she couldn’t know where she was because of the dementia.

How many times can a person repeat the same thing?  Repetition is frustrating for the caregiver, but not necessarily for the person living with dementia.  In their mind, it’s the first time that they’ve said something.  In fact, it’s the first time, every time.  Deena would ask the same question over and over, “Do you think my mother is mad at me that we left San Diego?”  I worked hard to respond the 10^th time in the same way that I had on the 1^st time.  She deserved that much respect.

Routine is an important element to build into life for a person living with dementia, because of their decreased ability to deal with change.  Waking at the same time each day, a regular eating schedule, an activity schedule, provides structure to the person’s life and a feeling of safety.

Our morning routine was simple but important and one that we had followed for many years.  We read the paper with coffee and had breakfast before getting dressed and starting our day.  Before Deena’s diagnosis, we were able to be as flexible in this routine as our life required.  Have a morning appointment?  Head out the door and grab a coffee at Starbucks.  Leaving for a camping trip?  Head out early and stop along the way to have coffee and breakfast.

However, as Deena declined, our ability to be flexible with anything, especially our morning routine was significantly compromised.  Any change to this routine made Deena feel rushed, pressured, which led to anxiety and agitation.  So, I learned to schedule appointments in the late morning or early afternoon.  I started normal household activities, cleaning, laundry, shopping, only after we were done with our morning routine, even if that meant things didn’t get rolling until noon.

Changes in motor skills can occur in the later stages of the disease.  Walking becomes more difficult, falls occur more frequently, even bringing a forkful of food to the mouth becomes a challenging effort.  Changes in motor function is a good example of how Alzheimer’s is a neurologic disease that affects the entire brain.

Deena started to experience decreasing motor skills at what seemed like a very early stage in the disease.  She fell many times, relied on assistive devices to maintain her balance and ultimately ended up needing a wheelchair.  As I look back, I’m not sure if these symptoms appeared earlier than usual in Deena’s case or the disease progression was further along than anyone suspected. 

Personality changes can be the least understood, least discussed and most difficult symptom for caregivers and families to manage.  A loving, sweet person suddenly becomes angry and hostile.  A happy upbeat person becomes depressed and withdrawn.  How does a memory problem cause a seemingly fundamental shift in a person’s personality?  It only makes sense in the context of understanding that dementia is neurologic disease.  I’ve told myself a thousand times:  “It’s not Deena.  It’s The Disease.” 

The wide array of dementia symptoms can be overwhelming, and because they’re often more cognitive and emotional than physical, they can be harder to recognize and cope with.  I came to understand that the changes in Deena were a symptom of her disease, in the same way that pain might be a cancer patient’s symptom or that shortness of breath is a symptom that a person diagnosed with Congestive Heart Failure might have.  

You wouldn’t react with anger or frustration if someone was in pain or couldn’t breathe.  You’d be sympathetic, understanding, comforting.  When I realized that Deena’s agitation and anger, constant repetition and confusion was the Alzheimer’s equivalent of pain and shortness of breath, I was able to focus on Deena and not the symptom.  That let me respond more from a place of love and understanding, not reacting to her anger with my own anger and frustration.

SOURCES:

Healthline.com, 10 Early Symptoms of Dementia

Understood for All, Inc., What is Executive Function?, 2014-2020, understood.org