I was a guest blogger on Stacy Monson’s blog. She and I were both in care-giving roles with our moms who had Alzheimer’s disease. I am posting it here because I know many are dealing with aging parents or a spouse who may be struggling with dimentia or Alzheimer’s and is meant to give encouragement to all care-givers regardless of the reason your care is needed. This is my blog she featured in June, 2018:
Mom was 81 years old when we noticed her forgetfulness over the past few years was getting worse. She would ask the same question or tell the same story repeatedly, she would put household items in odd places, she used words out of context, and the figures in her checkbook were a scrambled mess.
I took Mom to her family doctor for a cognitive assessment and general checkup. Physically, she appeared to be fine, but her mental assessment showed she was in the beginning to mid stages of Alzheimer’s disease, although she masked any previous red flags with her sense of humor. She lived her entire life by her motto: “I’d rather laugh even if life has other plans for me.” The doctor thought Mom was still capable of caring for herself in her own home where she had lived for the past 47 years – the last 28 of those years as a widow. “But, she should have more social contact,” the doctor said. So, I made arrangements for Mom to be involved at a senior center one day a week, which she enjoyed.
I had become her primary caregiver. I made doctor’s appointments, took over her finances, tried to organize and simplify the chaos in her house, and wrote sticky notes to remind her of simple daily tasks. I made a journal for her to keep track of dates and things she and I did together. When Mom was 83, I grew increasingly concerned for her safety and well being – especially when driving. I knew I had to sell her car. At first, she was adamant about not giving up her car. I explained that if we sold her car to a young mother with two children who needed a car, she would be helping someone in need. She was okay with that as long as she felt she was helping someone. I continued encouraging her to consider moving to assisted living where she would be around people. But, Mom was stubborn. “Humpf,” she would say.
It was at this time that my brother came home from California, and my sister was back from New York, so we decided to have Mom’s will updated. We also wanted to make funeral arrangements. “We really need you to help us make some decisions, Mom.” We took care of all her financial and necessary arrangements. We made sure she was involved in all the decision-making as much as possible, which gave her a sense of worth and purpose working together with us. With the necessary tasks completed, I could concentrate completely on caring for her immediate needs.
The following year, Mom said, “I guess I’m ready to move.” I had already checked out several facilities and had narrowed the search down to three. Mom and I spent the day together touring the facilities; she made the final choice – a lovely assisted living place with a memory care unit. The time came for her to move, and it went fairly smoothly. I stayed with her the first night which boosted her confidence. “If I don’t like it, can I go back home?” she asked. “You’ll love it here,” I assured her. Lord, please help her to like this place. I’m meeting with the realtor tomorrow.
I noticed a drop in her cognitive abilities with the adjustment of a new place, new faces, and new routine, but I knew she would not be able to live on her own any longer, so I spent more time with her helping her to adjust. She met a man named Art. They were so cute together – walking the halls hand-in-hand or sitting outside on a bench or eating lunch together. Wherever Mom was, Art was always next to her – being protective and caring in such a tender way. Mom and Art talked about getting married. I joined them in their excitement, although I knew this would never happen, but it gave them hope for the future. After a time, Art progressed rapidly with Alzheimer’s and wandered away one evening. They found him late that night, cold and very confused. His son was outraged that Art was allowed to leave the building unnoticed and promptly moved him to another facility.
Shortly thereafter, I noticed bruising on Mom’s arms and hands. I asked her about the bruising, but she could not remember how it happened. Of course, no one on staff knew how it happened either. After the second time of Mom having bruises from being abused, I decided to move her. My bubble of naiveté that all care facilities have the residents’ best interest at heart burst. I knew I had to be more thorough in my investigation of care facilities. I did find another one that seemed to meet all my expectations, and I moved Mom. Her adjustment period was less stressful this time.
On one of the days I visited her, she was sitting with a gentleman on a sofa by a window. I greeted my smiling Mom with a kiss on the cheek. “Hello,” I said to the man. “My name is Rita. I am Dorothy’s daughter. And what is your name?” He looked thoughtful. “I thought it was Leo, but I guess it’s Art.” I arched my eyebrows, stifled a chuckle and nodded. “I’m glad to meet you.”
I remember when Burt and I were engaged, Mom had said, “If you and Burt ever have problems, don’t come home. Send him,” I knew she was giving me 100% approval of my husband-to-be. Mom had always been my go-to person throughout my married life. She taught me how to cook, how to sew, and she modeled how to be a loving wife and mother. It was Mom who made sure we all attended church every Sunday as a result of a promise she had made to her mother. Now, it seemed strange for Mom to be dependent on me with questions and whatever help she may have needed.
One day while visiting Mom, I got a rare glimpse into the mind of one with Alzheimer’s. “I feel like I am in a tunnel and I can’t find my way back,” she said. “Are you afraid?” I asked. “No, just frustrated.” “Where do you go in the tunnel?” I prodded. “I’m with my mother.” “Why do you go to your mother’s?” “Because she knows how to fix things,” she said, tapping her forehead. “How do you get out of the tunnel?” I asked. “What tunnel?” I knew my moment in her world was over. I felt a sadness as I watched Mom slip further into the unknown realm of Alzheimer’s – the silent thief that robs people of who they were.
Months plodded on. “I’m disappearing.” she said. “There’s nothing in my head anymore,” It was as though Mom was making an observation of her own disease. I would look into her once beautiful, hazel eyes, but only blank eyes stared back. No memories? No thoughts? Heavenly Father, please help my mother know You love her.
Other times, Mom would be lucid as though all this were all a bad dream. On one of those particularly cognitive days as we walked hand-in-hand on the sidewalk that circled the care facility, I asked, “Do you feel fear on those days of utter confusion?” “No,” she replied, “but I’m very annoyed and frustrated that I can’t remember what I’m supposed to be doing.” “Do you ever pray about it?” I asked. “All the time. I pray, ‘Lord, I don’t know what I’m supposed to be doing or where I am supposed to be. If I’m to know what you want me to be doing, You’re going to have to speak a little louder.’” I smiled. “I wish I could help you.” “I do, too,” she said, and squeezed my hand. And she would slip back into her nothing-ness.
I would often call her. Sometimes she would answer the phone, but most times she would not. One of the times I was gifted with the most amazing conversation ever! “How are you doing, Mom?” “I am wonderful! About an hour ago, I learned that this is where I live. I own everything that’s here. This is my home!” She sounded excited. “Mom, that is awesome!” “I don’t know where I’ve been or where my brain was, but I know where I am now.” Her words were clear and concise. “Welcome back!” “I should get back to cooking and baking,” she said as though that was a grand idea. What is the first thing you would make?” I asked,. “A mess!” she replied. It was exhilarating to me. “I’m going to come visit you.” “Okay. See you soon,” she said. I could almost hear her singing. Lord Jesus, Thank You for my mother and her love of laughter. Teach me to love, to laugh even if life has other plans for me.
When I arrived, Mom was wandering the halls, crying. She’d retreated into her world of confusion and to the depths of being lost with no identity. My heart sank, although I felt very grateful to have been able to spend those few moments with her when she was “back” in my world. Lord, please extend Your boundless grace to my mother. Lead her through this dark valley.
The next day when I visited her, the phone that sat on her night stand was disconnected with its cord wrapped around itself, as was the clock radio and the TV cords. And I knew that was what her mind was doing – disconnecting.
I cherish another conversation with Mom after I read Psalm 23 and John 3:16. I knew she was a believer, but I asked anyway. “Mom, do you know where you are going after you die?” “Of course.” “Well, where will you go?” I prompted. “To the mortuary.” And we laughed because we both knew it would be heaven. Those lucid times of wonderful conversation became fewer and fewer as time wore on until they were no more.
Eventually my visits consisted of feeding her breakfast every morning. “You look beautiful this morning,” I would say, coaxing her lips to open with a spoonful of oatmeal. She would open her mouth, but she did not respond verbally. Her eyes were completely empty. Her hands and arms were frail. She sat there in her chair with a terry towel tucked under her chin not knowing me, or her surroundings, or that she was eating oatmeal for breakfast.
I left that day thinking about Mom and the rest of the residents. What is their purpose? Most sat in the dining room waiting for the next meal, although they did not consciously anticipate anything. They had no plans for the day except to come back to the dining room or wherever they were wheeled for whatever reason.
As I walked to my car, I asked, “Lord, why?” I made a wide sweeping motion with my arm encompassing the entire care facility. The Lord impressed upon me that these precious people are silent teachers – teaching family members to learn how to be caregivers. They are a living proverb, and to spend time with them is to acquire patience, learn how to show real kindness, compassion, servanthood, perseverance, gentleness, love and self-control. I marveled at the Lord’s working because if it hadn’t been for my mother in this seemingly purposeless existence of Alzheimer’s, I never would have caught the lessons He was teaching me. And for that, I am grateful.
I received a phone call early one morning in September. “Rita, you’d better come. We think your mother may have had a stroke while we were giving her a shower.” Burt and I raced over to the care center. Mom was lying on her back in her bed next to the window. She had a terrified look on her face and was breathing in short breaths, but could not communicate anything. I leaned over her and kissed her cheek. “Mom, Rita is here, and so is Jesus.”
I continued to hold her hand. Then, I put my cheek next to her cheek and spoke into her ear. “The Lord is my Shepherd, I shall not be in want. He makes me to lie down in green pastures; He leads me beside still waters. He restores my soul. Yes, even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me; Your rod and Your staff they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil. My cup overflows. Surely, goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord forever.”
Mom completely relaxed as a look of serenity spread across her face. Jesus called her by name and she responded because she knew who Jesus was, and she knew who she was. I held her hand as she took hold of Jesus’ hand and stepped into eternity with Him.
The nurse asked, “What did you say to her, the reason she became so calm?” “The 23rd Psalm,” I said. “Her mother taught it to me when I was just a young girl, so it comes full circle.” I looked at Mom with tears trickling down my cheeks – she fought the good fight. The enemy was defeated. She was 92.