Dad loved golf, Mom’s chili, browsing in Goodwill, homemade ice cream, and perusing house plan magazines. He was a great whistler, played a mean game of basketball, and was – hands down – the best and most practical Old and New Testament survey instructor. I wish you could see his notebooks (as Jordan recently noted, filled with notes taken long before Google, eSword, or Logos.) He took time to think through an answer before he gave it. He was a prolific and talented writer. He was honest in his evaluations, and that probably frustrated one or two former students! He was confident, witty, fair-minded, reserved, intelligent, and well-respected. As a boy, he sang soprano (yes, soprano!) with the Fort Worth Boys Choir. He got up in the wee hours of the morning to take care of his neighborhood paper route for the Fort Worth Star-Telegram, and often spent his nickels and his Saturday afternoons at the “picture show” watching westerns and World War 2 newsreels.
Most of those interests and talents, aside from his affinity for Mom’s chili, homemade ice cream, and whistling, have faded by now. Dad has some form of a cognitive disorder, sometimes called dementia – but I don’t like that term. It makes him sound as though he is demented – and he is not. He still loves my mom. He still knows who we are. He dresses for worship just about every day. He still wants to teach. He is still funny: recently he had taken a fall in his bedroom. As we walked into the room to help him up, Dad, flat on his back, stared up at John and said “I always did look up to you!” We all burst out laughing. He is still Dad.
A recent novel (and subsequent movie) called Still Alice by Lisa Genova captures the story of a 50-year-old woman living with early onset Alzheimer’s disease, and its impact on her loved ones. The story hit home. The fictional character Alice is a doctor of psychology who taught courses in cognitive psychology, researched in the field of linguistics, and lectured publicly. The disease was detected early enough for her to be cognizant of the inevitable frightening outcome.
“My reality is completely different from what it was not long ago. And it is distorted. The neural pathways I use to try to understand what you are saying, what I am thinking, and what is happening around me are gummed up with amyloid. I struggle to find the words I want to say and often hear myself saying the wrong ones…my short term memory is hanging on by a couple of frayed threads. I’m losing my yesterdays. If you ask me what I did yesterday, what happened, what I saw and felt and heard, I’d be hard pressed to give you details…I often fear tomorrow. What if I wake up and don’t know who my husband is? What if I don’t know where I am or recognize myself in the mirror? When will I no longer be me? Is the part of my brain that’s responsible for my unique ‘me-ness’ vulnerable to this disease?”
It’s impossible to know how far into this journey we have come, and how much farther we have to go. When did it even begin? Two or three years ago, those of us who are close to him noticed him repeating himself, or grasping to find a word that he wanted to use, but we brushed it off as Dad simply growing older. Of course, Mom saw much more than Doug and I did. But we didn’t want to believe anything was wrong. I didn’t want to talk about it. Yet, almost against our will, we have learned a lot in the past 18 months. Perhaps some of you who are facing the same daunting diagnosis may benefit from knowing what we’ve learned.
Denial is not helpful. I’ll never forget the Sunday morning that Mom called me, crying. She was juggling too much, trying to finish printing Sunday morning’s bulletin, struggling to meet Dad’s needs and answer his questions and get to Bible class on time. I felt ashamed that I had not seen (or had not wanted to see) her rising stress level. She had been trying, in various ways, to tell us that something was wrong. But because she didn’t want to interfere with our lives, she was reluctant to ask for help. Now, I wish that we had sat down with her earlier, and said “What are you seeing? How can we help? What do you need?” It seemed that putting a voice to our fears made them more real, and it hurt. But it hurts more, now, to know that she needed our help earlier and we did not do all that we could have. Those of us who are masters at procrastination and denial need to know that we are only making the disease more difficult for our loved ones and for ourselves.
Memory loss isn’t all bad. One of the earliest visits with Dad’s neurologist was painful to witness. He asked Dad questions regarding dates and times that would be simple for you and me, and yet Dad couldn’t answer them. It was evident that he was embarrassed. It hurt me to see him hurt. And yet, by the time we got to the foyer of the building, he had forgotten the questions and his embarrassment. So, there are times to be thankful for memory loss.
Creating good memories for our children is vital. Dad can’t remember what he did yesterday, but much of his long term memory is intact. He can remember his childhood on Harrington Street, playing baseball with his buddies and those friends from his church group who influenced him. It brings a smile to his face to talk about his childhood, because it was happy. Not perfect, of course, but he was loved and cared for and taught truth. I’ve often thought – what if he didn’t have those happy childhood memories? There would be fewer memories to bring him joy now. I’m so thankful for Dad’s parents, my Meemaw and Boompah, and their family trips to Colorado and New York and the memories that they unknowingly crafted for Dad to enjoy in these later years. I’m thankful for Dad’s good school friends and college friends. We can say something about “Vinzant” or “Clyde Alderman” and I know he will smile.
If someone has influenced you, or taught you, or helped you – tell them now. In June of 2013, we had a 50th anniversary party for Mom and Dad. Using social media, we asked for – and received – many notes and cards of love and appreciation from former associates, students, longtime friends, and family to be put in a memory book for them. It meant so much to Doug and me, and especially Mom, to be able to read those affirmations of their worth over the years. Dad, though slipping away at the time, was able to read and recognize and understand the significance of those notes. So many times we have been thankful that we had that gathering of loved ones, so that Mom and Dad would see how much they have meant to so many people over the years. I’m so glad we didn’t wait to give them this tangible evidence of love.
The caregiver needs more help and attention than the patient. Mom is with Dad 24/7/365. Because of her love and care, he doesn’t really know that anything is wrong with him. But he is reluctant for her to be out of his sight. She fiercely guards his dignity and carefully dispenses his meds and watches his diet and minds his schedule. My heart breaks for her when I consider that, at some point, she’d had her last truly cogent conversation with him (how could she realize it was the last?) When I cry, I turn to John for comfort. But when she cries, how can she turn to Dad, who would be distressed by her tears, especially if he understood that he was their source? She has no way of knowing what each day holds. And so now more than ever, she needs our help and support. She needs us to be her shoulder to cry on, and she needs us to bear the sadness with her. Before any of this began, I loved and respected her, but I do even more now because I’ve witnessed how tenderly she cares for my Dad.
Cognitive disorders seem to create a role-reversal. I’m not suffering under the delusion that Dad changed many of my diapers or often got up during the night when I cried (thanks Mom!) But growing up, I was confident that he loved me. I remember that he taught me. I knew he had the answers. In September of last year, Mom had major spinal surgery to alleviate the severe pain she had been enduring. She was in the hospital for several nights, so I stayed with Dad. There were a lot of things I worried about before and during that week – how would he handle her absence? How would I handle difficulties that might arise? But now I’m thankful for that time, because I know he was confident that I was there, I loved him, and I had the answers to his questions. He patted me on the shoulder and said “I don’t know what I’d do without you.” We sat on the deck and enjoyed the sunset and drank milkshakes together. Though I was fearful at the time, I’m thankful that God gave me the opportunity to serve and show love and appreciation to my Dad. “Blessings”, by Laura Story, contains this lyric:
“What if Your blessings come through raindrops, what if Your healing comes through tears? What if a thousand sleepless nights are what it takes to know You’re near? What if the trials of this life, the rain, the storms, the hardest nights – are Your mercies in disguise?”
I am confident that God didn’t cause Dad’s illness. This life is full of struggle and sadness and difficulty and disease. But I know He cares for Dad, He hears my Mom, He knows Doug and I hurt. I trust Him. He can use these difficulties to draw us closer and reveal our need for Him and His mercy toward us. “Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength,” (Isaiah 40: 28-29). Dad’s “outer self is wasting away” but his “inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal,” (2 Cor. 4:16-18).
There are other things I’ve come to see. I will try to be more conscious of older people who do not have children or family close by to help. They need our attention and love – it’s very likely that they are struggling with things that are simple for those of us who are more able-bodied: adjusting their home’s thermostat, keeping the car’s battery and tires maintained, or picking up items from the drugstore or grocery store. I’ve noticed that I needed to learn how to sit still again. We’ve become so accustomed to multi-tasking, errand-running, and constant use of technology. While Mom was convalescing, she just needed me to be there and be still and pay attention. And while time flies for those of us on the go and there aren’t enough hours in the day, time passes slowly and days run together for those who spend most of their time at home. When it is appropriate, a visit is a welcome diversion for a long, quiet day – and it is a blessing for everyone involved.
Finally and truly, I have been made even more aware of my wedding vow to John – to love him through “sickness and health, for better and for worse.” Watching Mom loving Dad through the “sickness” and “worse” part has made me appreciate even more the “health” and “better” that John and I have right now. I am determined to love him more and tell him more often and not take our conversations, our laughs and tears, and our whole relationship for granted. It is precious and it is here and now and will not be forever.
I miss the old Dad. Sometimes I see an old photo or hear his voice on an old recording and it catches me off guard, and I have to swallow the big lump in my throat. I ache for Mom and her loss that is so much greater than mine. But we count our blessings. We are thankful that he is agreeable and enjoyable to be around. We are grateful for the things that he taught us before, and for what he is still teaching us, and for the memories that we have. We are glad that he is still Dad.