Patient Spotlight: Chris and Bill
Thanks to our HABIT Alumni Chris and Bill for sharing their story with us this week!
Our journey with Mild Cognitive Impairment (MCI) started in 2017. It began when I noticed that Bill would forget conversations or plans that we had made. My background is in nursing, specifically working with people with dementia. An assessment revealed that Bill had MCI. We were in shock. I was angry and frightened of the future. In my imagination Bill’s condition progressed instantly to a time when he would need to transfer to a supervised dementia unit. Bill's reaction was a fear of loss of control. Bill is a very bright and independent guy.
The first feeling of hope came when Bill began to take the medicine Aricept. We hoped that the medicine could slow down the progress of the disease. We began watching closely. Bill realized that he was still himself. The diagnosis did not change him. He would say “I’m still me.”
We both began to realize that we needed to take one day at a time. We became grateful for what we have. We began joking about his forgetfulness. We were smart enough to realize that I needed to learn about our finances. We completed our estate planning.
With all this positive occurring, I still had, in the back of my mind, the fear of the future. Would Bill need to live somewhere to get special help? How much time did we have left?
In October of this year we attended Mayo Clinic’s HABIT Healthy Action to Benefit Independence in Thinking program in the La Crosse, Wisconsin area. We weren’t sure what we had gotten into. We knew that it was long, lasting two weeks. What about dementia could take two weeks to learn? There was even daily homework!
On the first day of HABIT, MCI was defined. MCI does not automatically go into dementia. I just started the HABIT program and this bit of information was the best information I could receive. I began to have hope in today and in the future.
During the two weeks session we reviewed our lifestyles. Since Bill had MCI, what did we need to add or change that would help us remain happy, independent and safe? In other words, what tools would help Bill maintain his dignity? Regular physical exercise has always been part of Bill's life. On the other hand, when he was introduced to Brain HQ, he didn’t want to exercise his brain with “computer games." He has since become pretty good at Brain HQ. We modified our diet to include parts of the Mediterranean diet. We were advised to think about planning for the future and to talk to our sons about where our estate plan was physically located plus making sure the boys had a complete, updated password list. Basic, important pieces of information we had not thought of doing before the program. Bill realized that he had been isolating socially. After the program he signed up for support groups, joined a group that meets weekly to talk about current issues, and, my favorite, he joined a MCI choir. With all these activities, he’s happy and busy. Thank God for the calendar.
Speaking of the calendar, it has helped Bill remain independent because he can look at his calendar and see what’s going on each day without having to ask me. For me, looking at all the activities that are scheduled, I find that sometimes I have to “unschedule" some of the events so I have time for myself. We have to continue to use the Calendar daily. It provides structure and peacefulness in our lives.
Bill has adapted the calendar to meet his needs. There are projects that he wants to do but does not know when he wants to start them or how long the project will take. He plans to work on them gradually. He does not want to forget to do them. In the back of each monthly section he has added to the notes a category entitled “Stuff to Be Done.” These projects can be forwarded to the next month if not completed during the current month.
Being part of the partner's alumni group on Clinic Connect has become a place where I can vent, seek advice and know that Bill and I are not the only ones who are living with MCI. Bill and I hope that other families do not have to experience MCI. If you or someone you love is diagnosed, remember that the world is not coming to an end. There are ways to work with MCI and not against it. Paraphrasing on of Mr. Rogers quotes, “If a problem can be mentioned, it can be managed.”
Bill and I continue our journey. We are simplifying our lives and ask for help from others. We are blessed to have the HABIT Program and you as our friends walking along with us.
While the partners' alumni group on Mayo Clinic Connect is private to those who have completed the HABIT Program, a general dementia on-line support group can be found at Caregivers: Dementia.