As my wife began to struggle with forgetting words, games, familiar places and things people told her, she began a personal quest to remain in control. She would write everything down and constantly test her own memory skills. She agreed to seek the medical expertise of a neurologist and, sadly, we received the devastating diagnosis of early-stage Alzheimer’s disease. As a loving couple of many years, we embraced the illness together, seeking education and awareness of what the future would bring. We both wanted to spend time together and experience everything on our bucket list. Although unspoken, I knew we both were filled with fear and dreaded discovering how long we would have while she remained the woman we both knew.
She had good days for quite a while, but other days she would scream with frustration and anger, “I don’t know who I am!” I watched her desperately trying to hold onto the precious memories of our marriage, children and her achievements. When we were with family and friends, I sensed her shame and wonder as to what people must be thinking of her. Although still committed to facing this illness together, she is now in the last stages. So, let me ask what may seem like a strange question, but one I would really like to understand: Is that wonderful wife of my past still within her somewhere?
What a heartfelt story and question. Among medical experts, the awareness you speak of presents differing opinions. Therefore, definitive answers concerning how much those with dementia are capable of understanding or feeling, if they can hear voices and music, or whether their memories remain hidden in their souls are simply unknown.
Carol Bradley Bursack, Agingcare.com, holds the non-medical opinion that since moments of clarity do often appear within a flash of time, that this suggests a kind of proof that there is still a great deal going on in the brain of a person with advanced dementia. She strongly feels there is no time when a human being should be considered less than a human being.
For those who have been reading my column, you know my approach to dementia is always positive. I, too, agree that your loved one knows you are there and feels your love. I don’t have a medical background, but I suggest we should continue to tell them every remarkable thing about their life, remind them of every glimmer of their greatness, share memories and, of course, create small moments that may still matter to them. I believe that God is waiting with open arms with a life that will last forever.
Please visit my new website, www.moment-making.com, to learn more about caregiving and to submit your questions, challenges and successes. Cochran Beaulieu, a resident of Sumter county, is the author of the book, “Moments that Matter, a roadmap for caregivers and their loved ones with memory loss.”