Patient Spotlight: Debbra and Ernie

Thanks to our HABIT Alumni Debbra and Ernie for sharing their story with us this week!

Mayo asked if they could do an article about our experience with their program called Healthy Actions to Benefit Independent Thinking (HABIT).   I knew they wanted us to share what we learned in the HABIT program, and I knew they wanted a picture of us.  I decided to start with the easy part… searching for a picture.

It turned out to be not so simple.  I could NOT find a picture that didn’t have HABIT’s Mayo Calendar sticking out of Ernie’s front shirt pocket.  I’ll admit to having a large strain of perfectionism, and I wanted something that looked more like a studio shot.  I started to ask a friend to take a more “appropriate” picture since it was going to be online.  But then I re-thought.  This is our life.  Ernie has that HABIT calendar in his pocket all of the time – every time you see him.  If he is awake, he has the calendar, he is checking it, writing in it or sometimes using it to remind me of something I’m supposed to do!  So here is our picture and here is our story.

Ernie was diagnosed with Mild Cognitive Impairment (MCI) in late 2015.  The doctor that made the diagnosis referred us to Mayo’s HABIT program.  This was a 10-day program for people with Ernie’s very same diagnosis and their spouses or partners.  Although we were both reeling from the diagnosis, we knew this was a great opportunity.  There are very few programs available in the country for patients diagnosed with MCI.  The possibility of participating in HABIT gave us hope that there was a way for us to learn to navigate the journey we were facing.  We felt so fortunate to be accepted into HABIT in 2016.

There are five parts to the HABIT program:  Individual memory compensation training (the Calendar), Wellness Education, Brain Fitness, Yoga and Group Support.  Our session of the program was part of a study that randomly left out one of the five parts, so we missed the group therapy sessions, but we got all the others.  Even with just four parts of the program, it was a lot to take in.  It was informative, interesting, challenging, inspiring and some days totally exhausting.  We learned so much!

Some of the aspects of HABIT were better suited to our lifestyle than others.  For example, yoga was like a foreign language to Ernie, and even as much as I wish I would incorporate it into my life, it hasn’t worked yet.  Yoga just didn’t “take” with us.

On the other hand, Brain Fitness was another story.  I enjoyed doing the brain games.  Ernie found them a little more frustrating.  But once we finished the program and settled back into our daily routine, he found that he really enjoyed playing Sudoku on his tablet.  I love doing the Crossword Puzzle and Jumble in the newspaper.  Doing stimulating brain exercises soon developed into one of many healthy “habits” that we incorporated into daily life.

Likewise, the Wellness Education provided a lot of new information and a number of useful reminders and helpful tips.  We were already fairly healthy eaters, but the information on the Mediterranean diet and discussions around that way of eating helped me to focus on making our meals part of our healthy “habits.”  And, the wellness discussions around physical activities were extremely helpful.  We went from thinking of a long walk as something that was nice to do when we had time, into making a morning walk a part of our daily routine – another healthy habit.

But far and away, the part of the program that was most helpful for us was the Calendar.  It took some training.  In the first days of the HABIT program, it was a little frustrating for both of us.  Ernie was sometimes discouraged learning the Mayo HABIT procedure, and I was unhappy and dragging my feet about having to “give up” the calendar on my smartphone.  We laugh looking back on that time.  Before the 10-day program was over, Ernie was totally on top of the calendar process and I happily realized that sometimes in life, you get to have your cake and eat it too!  Keeping my smart phone calendar AND the Mayo calendar was no problem at all, and it allowed Ernie and me to be real partners in planning our days and tracking our activities.

Based on advice from our HABIT program neuropsychologist, I have two cardinal rules:

• to never touch Ernie’s calendar, and
• to always sit down together to plan our activities.

Ernie’s calendar is his – he keeps it himself.  He writes in it whatever he finds useful and important.  On the yearly calendar, he keeps event dates like birthdays or major medical appointments.  He also uses the back section of blank pages to record information he wants to refer to later, but sometimes draws a blank on – the name of our lemon tree (Meyer Lemon), the names of friends who only visit us once a year, and the difficult medical names of his prescription medicines so he can reference this when he talks to his doctor.

On the monthly calendar, he keeps all of his personal appointments on the hourly schedule page.   In the “To Do” section, he writes things he wants to accomplish or activities that don’t have a specific time frame.   In the Notes section, he keeps all of my activities for each day.  (Did I mention that he sometimes has to remind me to start hustling since I have an appointment coming up?  He ALWAYS gets a chuckle out of this!)  He keeps other relevant information in the notes section.  As an example, if he meets someone and wants to remember their name or what they discussed, it goes into “Notes.”  Sometimes, if we have a special evening with friends, and he wants to remember the specifics of what we did, he puts it his Note section.

I could say the Calendar has become a healthy “habit” but it is so much more than that.  It is the bedrock of our daily conversation. “ What’s happening today?” “ What do we have to do this week?” “ Are we free for dinner with friends the first Friday of next month?”   It is a tool that gives us both autonomy and independence and at the same time, a shared reference point.

Before the beginning of each month, we sit down at the kitchen table and fill out our calendars for the upcoming month.  Every Sunday evening, we sit down again and double check the pages for the week ahead to make sure we have incorporated any new plans.  And every day, Ernie opens his calendar in the morning and checks the days activities.  He almost always ends the day by opening the calendar, checking off accomplishments, and making notes about what happened during the day.  The Calendar has been a Godsend for us.

The journey of cognitive impairment is not an easy one – it’s a hard trek.  When you are starting out on a difficult and strenuous trek, you need the right tools.  And if you are lucky, you will have someone cheering you on along the way and asking how things are going.  We found all of that and more in the HABIT program.