On the Other Side of the Wall: The First Morning

   The morning after Grandma moved in with us my two younger siblings and I sat around the kitchen table doing our school work. Grandma wandered around the house muttering to herself. Mom tried to get her to sit down at intervals so she could rest for a while but eventually she would get up so she could resume wandering. After a while Mom told her loudly, so she could hear well enough to understand, to stay in her chair. We could tell she did not appreciate being told to stay put. Maybe she thought she was being yelled at when Mom thought she couldn't hear her properly. Or maybe she didn't like being told what to do. She argued back, pouted, then got up again to keep walking. No wonder she was skin and bones. She never rested. We sat at the table, rolled our eyes at each other, and continued our lessons.

  We made it through that first morning with Grandma wandering around the house feeling a little lost. But we were all a little lost; it was early days in the realization of what Alzheimer's truly was.
   Up to this point we had experienced Grandma's condition from a sort of window shopping point of view. We looked in on her. We saw the disease. We carried it around on our own shoulders for a little while and then left it on the rack. It was a totally different experience to take IT home and keep IT. Now we actually had to care for it. But how?

 

On the Other Side of the Wall: The Meeting

   She walks in circles around the living room, quietly asking herself, "Where am I?" over and over. Slowly parting the sheer curtains she presses her face to the window. Bright headlights beam through the thick early darkness of the fall night. "Is that Nat? Is that Nat? Is that Nat?" Somehow as she squints and tries to see the cars coming down the road she knows that this is not really her home. Nat must be coming soon to take her back home. "Where am I? Where am I? Where am I?". Six times she peers out the window looking for her husband. Will he ever come? Will Grandma ever know where she is?

   At 7:00 that evening I was sitting in the living room with Mom and Dad. They explained the decision they made to have Grandma come live with our family was made out of necessity. Grandpa was no longer able to care for Grandma by himself at home so she had to live with us. Today was the logical step they took for her. Our big house was only thirty minutes away from Grandpa. Our other relatives lived farther away and were unable to care for someone in their homes. Mom's nursing experience made her the primary care-giver and myself along with my siblings and my Dad were to be the helpers. Dad said that Grandma was his and Mom's responsibility and if I had any concerns I could talk with them. Our conversation was simple and brief. Maybe Grandma would live with us for two more years until her health completely failed but until then we were going to take care of her. I knew it was the right choice. We had to do this as a family. But for me the idea of caring for Grandma held as much light as the heavy darkness outside. 

Thought for Today

  Today I am writing from one of my favorite coffee shops. It's warm here, the coffee is rich and HOT, the aroma of grilled breakfast sandwiches fills the air. We've been without power for three days and counting so I am thankful for time to get out of the house, alone without children, to relax and get my perspective back. It was a cold morning aside from our living room where the gas fireplace is keeping us comfortable. As I stood at my kitchen sink washing my hands looking at the thermometer outside the window which read the delightful 10 F, my eyes drifted down to a 3x5 card resting on the window sill. In my own handwriting in black ink it read, "I will extol the Lord at all times. His praise will always be on my lips." Psalm 34:1. I had to laugh to myself. The words AT ALL TIMES and ALWAYS hit me. This morning I wasn't thinking very clearly after another night of less than sound sleep trying to tune out a neighborhood of generators rumbling loudly. But those words were a shot of spiritual caffeine. Even when my french coffee press breaks, my contacts poke my eyes, my clothes feel wet when I put them on but they are just cold, or my water bottle is frozen solid when I grab it in the car for a drink..even those irritating moments are in the extol the Lord at all times cart.

Favorite Things!

   Today's favorite thing at the top of my list is something that on any other day might just be ordinary. But today? Yes, today it is keeping my family and I comfortable and actually able to be at home. And the lucky winner is....our gas fireplace! We have been without power since Wednesday at 1:00 pm due to what will be remembered as the Wind Storm of  March 8th, 2017. High winds tore through our area and caused trees to uproot and power lines to disconnect. But we are toasty while camping out in our living room thanks to our little fireplace that keeps burning bright and HOT.

On the Other Side of the Wall: Coming Home

   What's crazy about the day we brought Grandma home to live with us is that she had no idea where she was going. She knew we were familiar faces but she didn't know why. She sat still in the car mumbling in a slow rhythm her usual question, "Where am I?" over and over and over again. The scratched record player of her memory getting stuck and playing the same phrase hundreds of times in a row. In a way the dementia protected her from the anxiety of leaving her husband and her home where she had lived for over fifty years. The person she loved most and relied upon, all of her treasured collections, her piano, her sense of familiarity were all being left behind. She was actually calm as we drove away. Grandpa was standing there in the driveway, his heart breaking a little bit more, tears in his eyes and Grandma was okay with it. She was not suffering.

   For me personally this was the beginning of Alzheimer's Disease. We had been helping Grandpa with Grandma's care for two years but we weren't living with the disease. Grandpa was grieved seeing her go but set free at the same time. The crushing burden of holding onto his dear wife who was drowning in a black churning sea of disconnection from the world around her was being lifted. He was trying so hard to keep them both afloat every single day. Waves of exhaustion and frustration were overwhelming him and he was too tired to swim to shore. It was time for that burden to be transferred to somebody else. Now it was our turn; my parents, my siblings, and me were jumping into the sea.

   The car ride home was quiet. Slowly we pulled into the gravel driveway. Mom helped Grandma out of the car and led her into the house. We thought we were bringing our grandma, mother, mother-in-law, who had a disease into our home. In reality Grandma was not the only one who was going to be living with the disease. All of us were going to be living with it. Gradually, with the passing of each day, we all had a part of the disease as care-givers and helpers. Alzheimer's sat with us at the dinner table, kept us up at night, and followed us around the house during the daytime. Alzheimer's was alive and well on the other side of my bedroom wall breathing heavily, rattling the locked door, yelling at the face in the mirror. 

On the Other Side of the Wall: Silver Linings

   We all have our struggles. For most of us it is a very real struggle to get up out of our cozy beds early in the morning to start a day that will be full of ordinary stress. We get the kids dressed and off to school, rush to work, deal with coffee spills, snowy weather, wait in the never ending line in the grocery store with a screaming toddler. Life is full of annoyances; fender-bender types of situations that mess up our days, leave us irritated, and make us want to kick the dog, slam the door, and eat three enormous pieces of rich chocolate cake with dark chocolate icing as soon as possible. But we do our best, right? We get out of bed, try to be nice, try to have a good day, And the sun comes out, the traffic is moving along faster, we get our favorite parking spot, the kids actually make their beds without being reminded ten times, the baby takes a long nap, there is a beautiful card in the mailbox from a dear friend. But how do we re-act to a real bump in the road? A life-changing sort of problem that comes up and slams into our lives head on?

   One way of coping with a life altering problem or even the day to day "normal" problems is to look for the silver linings. That's where we find hope and and the good in life's trials. You have a new perspective on what is really important and begin to see how things are actually working out. After hanging in there your faith deepens, your relationships are more meaningful than ever before, in general you have a new perspective on life. However, that fresh view of life's challenges sometimes requires some distance, some time and then we can see how the jagged pieces fit together and the picture comes into focus. The blur from unanswered questions becomes clearer than when it was up close consuming our thoughts. 

   When I look back at that valley of Alzheimer's Disease, frankly, I don't see a beautiful landscape. For the most part I still have questions that won't be answered this side of heaven. However, I do see a few rivers that cut through the valley and keep flowing, carrying meaning into the plains of my life beyond that experience. For me one of those rivers, or silver linings, that I can now see after the space of time is my grandpa. When we started seeing him every week I had the opportunity to get to know my grandfather as more of a person and not just the somewhat feared head of our extended family.
   In many ways Grandpa and I had similar personalities which created a bond between us. Both of us tended to keep our true feelings to ourselves. I knew Grandpa loved me by the way his face lit up when I walked into his house and his enthusiastic almost surprised way of saying "Hi-ya Sarah!". He knew I loved him when he teased me and I teased him back. I wanted to be with him. At the messy dining room table we talked about the history of long-lost family members he had hunted for and discovered on his treks to libraries and cemeteries along the East coast. Next to his cherry wood desk he had a tall green file cabinet that held bulging folders of information on both sides of his and grandma's family tree. One day he pulled out a file and told me about a Hessian soldier named Chester Mack who married into the clan during the Revolutionary War. He even had a certificate with Chester's name on it. Once, when I was cleaning, I found an antique red family photo album held together by masking tape on the binding. Grandpa pointed out his parents to me who posed with serious expressions on their faces despite their youth. For the first time in my life I became acquainted with my great grandparents through the album grandpa had never talked about before. I asked him if I could borrow some of the pictures to make some copies but he wouldn't allow me to. However, at our next visit he gave me copies to keep that he had made at the library.
   I treasure the time I got to spend with my grandfather after we became more involved in Grandma's care. She needed help but Grandpa needed us just as much. He had lost his beautiful wife of almost sixty years to a disease that had left him with only a very small fraction of the woman he loved. He was there every day missing her. Who knows?  Maybe I was as much of a silver-lining to him as he was to me.

On the Other Side of the Wall: Early Days

One of the hardest parts of Alzheimer’s Disease is how long and drawn out it can be. Yes, we had observed the slow decline of Grandma’s overall health but the early signs of dementia we missed. Mom asked Grandpa when he noticed for the first time that something was not quite right, that there could be something serious going on with Grandma. When did he think her Alzheimer’s started for her? He said when she was 71 and they were on a trip and she all of a sudden had no idea where she was. He was shocked but let it go. For Grandma Alzheimer’s began as confusion or sudden forgetfulness. Over the course of ten years I lost my real Grandma. When I think of her during my childhood and early teen years I remember little square calendars she would let me take home from her house. I can smell the juicy Thanksgiving turkey she carved at the kitchen counter while she and I secretly sampled the best pieces together. She always wore bright lipstick and her black hair was curled under. On Easter she gave my siblings, my cousins and I beautiful brightly colored Easter baskets with chocolate bunnies, plastic eggs with quarters and dollar bills inside, jelly beans, and yellow marshmallow peeps. Her garden was filled with pink peonies, bleeding heart plants, and purple phlox. There was a tall white trellis at the entrance with climbing red roses. She proudly gave us tours, pointing out each flower when we came to visit. Grandma had a small birthday book to remember all of our special days and every year she asked me for a birthday and Christmas wish list. One time when I was in first grade she came to my school and gave a “talk” about her extensive butterfly collection. Grandma was generous and intelligent. She was a sweet lady to me as a little girl but by the time I was sixteen she couldn’t remember the basic details of her own life. Eventually Grandpa did take Grandma to the doctor to find out what in the world was wrong with her. But he never held a family meeting to let us all know about her diagnosis. It was a private matter until mom was downstairs in the basement with Grandpa one day and she finally asked the big question: “What is going on with mom?” And he answered, “Alzheimer’s”. That was that.