Along with Part 1, this post was inspired by readers who asked me to interview my husband, Keith, as well as my children as to their reactions, feelings, concerns, and fears regarding my MCI.
After reading Part 1, my editor asked for more Q&A from Keith! Here we go…
Question: If you could go back to the day Virginia was diagnosed with MCI; what would you want your past self to know about adjustments that can make life easier for you or for her? What advice would you give to others?
Keith: First I generally do not give advice unless somebody specifically asks for it. But since I have been asked, I will offer what I have learned about dealing with Gin’s MCI, while recognizing that every situation is different.
I’ve learned to be more attentive to Gin’s behavior and accept the reality that her memory loss is continually changing. I’ve learned to listen more carefully so I can distinguish when she just needs to vent and grumble, or when she is expressing a concern that requires my assistance—which can at times be very difficult to decipher.
I’ve learned that Gin can still write. And for the most part her writing is spot on. But when she’s trying to tell a story verbally, she often mixes time, place, and people. In the past I would have jumped in and corrected her, but now I let her tell her stories however she remembers them. Accuracy is of much less importance than the joy I see as she telling her story and being listened to.
Q: How has your communication changed with Virginia?
K: Gin often asks me the same question within a short period of time; such as “what are we having for supper? What day are we going to…? Who is coming over today?” I generally try to just answer her question without reminding her that she just asked me that five minutes earlier—a response that serves no good purpose. But I will ask her if she checked her calendar before answering. Fortunately, she takes no offense at my suggestions and often thanks me for the reminder.
Q: How has your communication changed with your children as a result of taking the “caregiver” role?
K: With the children, who of course want to be kept up to date on their Mom’s condition, I’m honest as to what I witness. And of course, they are concerned about my health—emotionally, physically and mentally (which currently is good). We have been a pragmatic family, so I share honestly. At the same time, we are all aware there will likely come a time when I can no longer care for Gin, and are pondering what changes will be required.
Q: How have your household duties changed?
K: I currently do all the shopping and almost all the cooking. Tasks I really enjoy doing and tasks Gin is delighted to relinquish. I also do all the bookkeeping and bill paying with Gin’s blessings.
Q: What advice would you give about supporting a loved one who is having a “bad day” with MCI?
K: As to suggestions for caregivers I have only a few. If your loved one is having a bad day, try to shift gears: go for a walk, work in the yard, read a book together, play a card or table game. When words don’t help relieve, soothe or calm, try a hug or holding hands—along with saying “What would you like me to do?” A phrase which helps define ownership and restores power.
If Gin asks me about an appointment time/day I generally ask her if she checked her calendar which helps her feel self-sufficient. When I see her struggling with a task I ask, “Is there anything you would like me to do?” Which allows her to have ownership of the problem as well as finding the solution. Whereas if I just step in and fix whatever it is, that can cause her to feel like a victim as well as deny her the right to own and fix her own problems.
Q: What is the most valuable thing you learned during the HABIT program?
K: The two most important things I learned from the HABIT program were: 1) I can change and adapt, but for Virginia this is much more difficult and in many cases; impossible. And 2) using a shared calendar helps Gin keep track of events and commitment without having to ask me all the time. It allows her to experience some sense of empowerment.
I hope what I’ve shared today is of help to others. MCI is a condition that creates it own path and time table. And it is only through sharing that we can help one another. So please, if you have anything to add to what I’ve written, I’d welcome hearing from you. Thanks for reading.