Christine Lee lives in New England in the home where she and Art raised their two children. Her writing has appeared on the Lewy Body Dementia Association caregiver stories blog. We appreciate her contribution to Cypress Home Care, and hope her story offers understanding and support.
About 18 months ago, our world was rocked to the core with my once vibrant husband’s shattering diagnosis of Lewy Body Dementia (LBD). He was barely 60. For over a year prior to that (probably longer, truth be told), our family knew something significant was happening to him. My husband, Art, struggled with what was unknown to us at the time, but was about to become all too clear to us, as Parkinsonian LBD symptoms.
Art began to suffer balance issues, often falling, as well as short-term memory loss, often forgetting how to navigate to once familiar places within our small town. His speech was often slurred, or worse yet, he was unable to retrieve or form the words at all. He occasionally “forgot” how to read, heartbreaking for a man who was previously a voracious reader. Conversations with him regularly became a struggle, as his ability to comprehend language began to wane. His livelihood was slipping away a little more each day, and he refused to admit it or seek medical help. Stubborn is his middle name to begin with, but LBD greatly heightens this aspect of his personality.
I recall the day we received the diagnosis: we sat in the neuropsychologist’s office, as the lovely, compassionate young doctor shared the crushing news. She explained the illness and all its debilitating aspects (some yet to come) with a concerned, yet wary eye on Art, and kept saying, “Do you understand?” He would hesitate, and with vacant eyes blandly reply, “Yes.” But he didn’t. He still doesn’t. How could he? We were told that day he could no longer learn new things. This was definitely new, disturbing, and overwhelming!
Fast forward to today: We have been handling his progressively declining health for a while now. I work 4-6 hours outside the home everyday, and employ a much needed caregiver for Art. It is my peace of mind while I am away from him. He does not see the need for it, even after falling in the bathtub and being knocked unconscious last December. He is ok, but it was a wake-up call for our family: he needed care beyond the hours I was home. He no longer drives, and he cannot fathom why the state took away his license and simply issued him an I.D. card. Why on earth does he need a handicapped placard? He used to be a professional driver for a limousine company. All issues he cannot wrap his changing brain around. But in the face of everything, we plod on, one day at a time, contending with new concerns as they rear their ugly heads.
On his worst days, he does not venture into public. On his best days, we may go the local coffee shop, or have an impromptu dinner out. We take it as it comes, and simply roll with it. I get annoyed when friends see him out and tell me that he appears “much better” than they expected. Really? Do you think he wants to be seen at his lowest point? Then there are the times I am not even afforded the opportunity to say “yes” or “no” to enjoy an evening or a weekend with friends, as it is assumed that I could never take the time away, or that he couldn’t come at all. Not knowing I was not included is ignorant bliss. When I am told, “I didn’t invite you because….” (insert unfeeling reason here), it’s hurtful to both Art and I. This makes him feel like such a burden, and so much less of a human being. It feels unfair, bordering on cruel. But then again, this illness is indeed unfair and cruel. People don’t know how to react to it or him. Many stay away. I am adjusting, and painfully learning tolerance in the face of LBD, both for him and our well meaning friends.
I value my time spent with my husband, because we are not promised a rosy tomorrow, or a happy ending. But making the most of each day with this man is crucial to extending his life, and making the time he has left pleasurable. We appreciate the little things in life– a cup of coffee shared together, a cool, crisp fall morning, fresh apple cider donuts, the sound of the rain on our house; nothing spectacular, just simple things so often overlooked in the past. So we celebrate the good days, and accept the worst days, and move on. Life is worth living, even in the face of Lewy Body Dementia.