It seems the right time to write a short recap of my more than five-year journey of memory and cognitive decline. Consider it a summary for new readers of my 40 plus entries here, and perhaps a review for my steadfast followers.
I’ve learned…I need a team of professionals and specialists to help me deal with this journey, including medical physicians, psychologists, psychiatrists, and therapists—particularly those who specialize in memory loss.
I’ve learned… when I “fudge” the truth or evade answering my care providers’ questions, I’m only hurting myself, and regardless of the pain, embarrassment, or shame I feel, I need to be honest. Otherwise I’m wasting their time and mine. Most important, my holding back will likely limit the possibility that I could feel better.
I’ve learned… about a two-week program developed by the Mayo Clinic for people who have MCI and their care partners. This program was tremendously helpful in educating Keith and me about the complex and intricate interconnections of the brain when one has MCI, as well as the emotions, nerves, and negative feelings associated with cognitive and memory loss. We learned about the best practices one can do to possibly stave off or slow down the progression of MCI: including diet, exercise, “brain games,” and medications. (Go to Mayoclinic.org to learn more about Mayo’s HABIT program.)
I’ve learned… how helpful it is to work with a therapist, specifically one trained in dealing with people who experience memory loss. For five years I had monthly sessions with my psychologist, where I could cry, laugh, and reveal my inner thoughts and frustrations. He recently retired and I miss my safe time with him. But I have recently scheduled a meeting with a new psychologist. Hopefully I’ll like her, however the thought of starting all over seems daunting. (I’ll be sure to post about how this goes.)
I’ve learned… to avoid using the term MCI when I ask for help or assistance or name my condition. Most people have never heard of this term, and often interpret the memory and/or cognitive loss to be more severe than it is. Instead I say, “I have memory issues and forget things easily. So, would you please repeat or write down the information you just said.” Thankfully, no one has ever been rude to me or acted as if this is an inconvenience.
I’ve learned… to appreciate the complex, intricate and intertwined relationship of the brain, emotions, nerves, and feelings. My afflicted brain has affected not only my memory and cognition, but also caused me to be moodier and more emotional, impacted my reasoning ability, shortened my patience, and decreased my physical strength, balance, and ability to perform intricate hand movements such as knitting and crochet.
I’ve learned… even though I know I haven’t done anything to cause my brain to malfunction, I nevertheless sometimes feel guilt, shame, and embarrassment, and I often want to stay in bed all day and not see anyone or do anything.
I’ve learned… how helpful and necessary it is to be open about my condition. From the beginning I’ve kept my family informed, which means we talk openly about my decline, feelings, and fears. Keith and the children often share their frustrations, observations, and talk about what the future will likely bring, without me being present. Initially this bothered me, but as time has passed I’m glad they are doing so.
I’ve learned…to do my best to look up rather than down, to not fret about what I can no longer remember, or no longer do. To relish the present as best I can, to enjoy having quiet time and choices, and friends and family who lovingly share their time with me.
And lastly, I realize…I’m still learning.