“Please know … I AM TRYING MY BEST ALL DAY LONG … I am trying to push myself through fatigue. I am trying to push myself through the pain. I am trying to push myself through the fog. I am trying to push myself through the insomnia. I am trying to push myself through the guilt. I am trying to push myself through the judgement. I am trying to push myself through the fear.
I am trying to push myself as best I can!“
– Cindy Bremer
Mom’s Hiding …
Summer of 2020, during the heat of COVID restrictions Perry elected to buy mom and Joe a flat screen Roku TV that could be mounted to the back wall of their living room, just right of their fireplace and hearth’s bench seat. I mounted the new TV on their wall, offering to save them money with a new streaming programming service, You Tube TV.
One thing always leads to another with Joe just like the book, ‘If You Give a Moose a Muffin’, by Laura Numeroff, … he’ll want some jam to go with it’. In this case, if you give Joe a free streaming service … he’ll want the new system to be like the old system without any gratitude for the free TV, free labor, or free streaming service. Likely a moose would be more grateful.
I suggested that I share our service with them for no charge, which would free them of monthly cable fees. Initially this appealed to them, especially Joe as he holds a penny so tight it can rub the face right off Abraham Lincoln. So, I mounted their front flat screen to the wall, setting up the streaming service in the front room along with the two backroom TVs.
The remote controls, navigation of apps and You Tube TV were much different than what they were used to. Initially, Joe briefly said he didn’t like it and wanted his old system. I delayed his request knowing once he learned the new system, he would accept zero cost. Soon, not another word from Joe (good or bad) as he became familiar with the navigation and saving over $125/month. That’s a lot of pennies motivating Joe.
Mom, on the other hand, was always grateful, patient, never complaining, but she could not figure out the remote or the navigation. So, I took an afternoon in her bedroom reviewing and practicing turning the TV on, locating the app, opening the service, and navigating for stations of interest like ‘Secrets of the Zoo’, Rick Steve’s traveling shows, or ‘Call the Midwife’. I even drew a picture of the remote with step-by-step instructions.
Mom was incredibly patient and self-deprecating yet frustrated that she could not figure out the streaming device yet never a coarse word came from her mouth. I even showed Joe what her interests were on TV so he could help her out, but he did not take much interest or time to see to helping her. Maybe it had to do with his poor hearing or maybe it had to do with him rarely having to think beyond his personal interests because mom did everything inside and outside of the house.
Mom’s inability to remember step-by-step instructions stuck with me but not for one second did I consider dementia as the culprit. Again, this was during COVID. Mom’s daily water aerobics was on ‘lock-down’. Mom’s weekly volunteering at the Chaffee Zoo had come to a standstill and communication was messaged by electronic means, such as email. She hated email. Her daily human connection and activities came to a screeching halt. She was withstanding severe pain in her back and down her left leg, later diagnosed as Lumbar Spinal Stenosis.
Perspective: Spinal stenosis is a narrowing of the spaces within your spine, which can put pressure on the nerves that travel through the spine. Spinal stenosis occurs most often in the lower back and the neck. Some may not experience symptoms. Others may experience pain, tingling, numbness, and muscle weakness. Symptoms can worsen over time.
There are two types: Cervical and Lumbar stenosis. Lumbar stenosis being the most common affecting the lower back.
Mayo Clinic. ‘Spinal Stenosis’, Symptoms and Causes
A few months later mom came to our daughter’s baby shower. Mackenzie, our oldest daughter of two, and her husband Phil already named their baby-to-be Darcy Lynn and were about two months away from parenthood. Bailey, our youngest daughter, picked Granny Gwen up from her house so she would not have to worry about driving, another clue that mom was slowing down.
My wife, Annie, noticed that mom brought trays of food as she always did for family functions. Yet, she remarked that what mom brought was a highly unusual assortment of appetizers with no semblance of design. Not her usual fruit tray with a theme of some kind put together with an artisan’s touch.
We had the baby shower outside in the front yard due to COVID and our daughter’s concerns about people gathering indoors. Annie did a bang-up job, as always, a master organizer and planner. With people coming and going I did not pick up on how uncomfortable mom was socializing with everybody. In short order my sister Cheryl drove her home and I didn’t think much more about it.
Mom was turning 82 years old on January 5th, 2021. For her birthday my brother and I convinced her to give up mowing and edging the lawn. Just a day earlier I had a phone conversation with her that caused me some concern when she was in the backyard, overwhelmed and clearly distressed. This was highly irregular behavior, and it bothered me that such a thing as the yard could cause such panic.
Stubborn and persistent as she could be, mom relented and accepted the offer for a yard service. Perry and I would pay for it as an annual birthday present, but she stated Joe wouldn’t approve. I said I would have Joe approve it even though his approval for her not mowing the lawn (which is something he never did for over forty years of their marriage) was not required. Besides, we were paying for it because he refused, expecting mom to continue as before.
Mom didn’t want any tension, always seeking to keep the peace. She deserved to be free of this burden coiling around her mind. It annoyed me that Joe was not simply of no help, he was an obstacle. He said no yard service was needed which was clearly untrue. I disagreed and said it was not negotiable. We began paying for a service Joe was unwilling to pay for. Mom would never cut one more blade of grass and Joe will never have her do it again. If he decided to mow and edge the lawn himself then we’d be happy to discontinue mom’s annual birthday gift. Not another word as he never pushed that lawn mower, receiving the fruits of mom’s offering.
Days later, I happened to stop by in the early evening to see mom. Things were adding up. Mom was in a bad way, but I could not put my finger on it. In some ways she was her witty, service-minded self. In other ways she seemed ‘a little scared, unsure, and more reserved’. I silently closed the front door behind me, making my way to the kitchen stove countertop. Mom was standing in the kitchen facing the stovetop while Joe was across the island facing her, eating a snack setting on the counter. I slowly made my way next to mom, greeting them both.
“Shh, shh,” mom said to me with her left index finger crossing her lips. “A guy is in the back room watching TV. Someone, I think Danny, invited him.”
I was taken-a-back, eyes widening, glancing at Joe seeking an answer to what I just witnessed. He was nibbling nervously as if to avoid the moment. Without looking up, Joe lifted his right hand to the side of his face, pointing to his temple, swirling his finger in a repetitive circle indicating she was crazy.
I couldn’t believe what I was witnessing, mom saying a random man was in the back room telling me that ‘Danny invited him to the house as if I – DANNY – was not present’. She did not in any way appear scared or fearful. Simply, she was concerned not to wake this visitor Danny invited to their home. She was informing me about some stranger being in the back room watching TV and wanted me not to disturb him. This was highly irregular, delusional, nothing this phantom ever occurred before with mom, or anyone else in my life.
My attention was completely devoted to mom. But in that moment, I unapologetically wanted to beat the shit out of Joe for making such an insensitive gesture towards my mother. Hurting Joe is not something I would literally do but that is how I honestly felt. He was indicating she was ‘out of her mind’ with such an obtuse manner. Who’s calling who surreal? Joe’s action and lack of remorse made me fiercely irate. I thought, “How could he be so distant and aloof regarding his own wife for God’s sake?”
I asked, “Mom, do you mind if I go to the back bedroom and see who is there?”
“Of course not,” she said. “You can go back there, but just be quiet,” wincing while speaking.
I cautiously made my way down the hallway turning left into Joe’s sleeping quarters where a football game was heard playing on the TV. Mom followed behind as I heard the creaking of raised wooden floorboards while Joe stayed planted in the living room avoiding mom’s hoodwinked reality.
“Well, mom,” I said, “I don’t see anybody,” as I looked throughout the room and in the closet.
Mom gestures to the TV saying, “See that guy right there (football player on TV), he is as big as him. He had a shower, and he went back here just watching TV. Maybe to rest or sleep, I guess.”
Mom followed me to the front bathroom where I touched the towel hanging from the curtain rod. It was dry. “Mom, well, not to worry. There is no one here now, ok.”
“He was back here,” she said as a matter of fact.
“Well, nothing to worry about now,” I said. “Everything is ok mom, he’s not here anymore.”
Mom followed me to the living room, telling Joe there is no one in the back room, playing along with the apparent apparition mom just saw with her mind’s eye. I didn’t want to confront mom. Something inside me wanted to protect her and not bring attention to this extremely odd occurrence.
I asked Joe if this was the first time this kind of thing had happened. He simply shrugged his shoulders unwilling to look me in the eye indicating he wasn’t sure as if he were an ostrich burrowing his head in the sand. I gave mom a hug and said I would be by to see her tomorrow.
I began to frequent the house often to check in on her well being. I am legally blind having retinitis pigmentosa and had not been driving a car for over ten years. So, if I couldn’t bike the five miles to her house Annie and I would drive over for a visit.
One week after the delusion about a big man in the back bedroom, Joe calls in the early evening. He is at a loss and asks that Annie and I come over right away not understanding that mom was sundowning. She is wanting to go home while sitting at the kitchen table by the front door of their home with some of her belongings in a tight grasp.
Annie and I arrived. The drive over to the house is filled with wonder and worry. We entered calmly, greeting both Joe and mom. Mom says, “Good, you have a car. Ok. Do you mind taking me home before it gets too dark?” Annie comforts mom with a hand on her back.
I say, “Mom, where is it you want to go?”
“Home,” she says.
“How do we get there? Where is it?” I ask.
“Well,” she said, “You just go down the street and make a turn. It won’t take long. Come on, let’s go before it gets too dark.”
This went on for about fifteen minutes. Annie and I were learning on the fly. Mom made her way to the kitchen counter by the stove top. She was pent up and stressed. She began to cry, something mom rarely displayed publicly. Annie once again put her hand on her back, rubbing gently, consoling her, “It’s ok, Gwen. Everything will be ok.”
Heartbreaking and endearing, they embraced. As I approached, mom said to Annie, “I can’t remember things. My mind is all mixed up.” I joined in their embrace. We encouraged and reassured mom everything will be ok. We would make sure she would have nothing to worry about. We thanked her for being so honest, opening up, and telling us what she was feeling inside.
I said, “You’re not alone. We will be here for you and help you. We thank you for not living in this alone. We appreciate you telling us what is going on.”
I redirected mom to her room grabbing a magazine from her book basket making sure she had her cholesterol meds, some pain pills for her back, and spoke with her about her bedroom’s belongings in the closet. She resigned to stay in the bed she slept in the night before, saying “I’ll just put these bags (filled with her purse, random clothes and shoes, personal hygiene, and cosmetic items) over here (in a corner of the closet). It is getting late so I might as well stay here tonight.”
Mom got ready for bed and began to settle in for the night. Annie and I spoke with Joe for a while, and he said he didn’t know what to do. We thanked him for calling us and asked if any more incidents arise to immediately let us know, we are here to help. He was again resembling the all too familiar ostrich burying his head in the proverbial sand feigning ignorance, refusing to address the sad reality playing out before all of us.
Note: The next post is ‘Dementia Unfolding in Mom, Part 2’. Mom is no longer in hiding.
Take care, my friend 👍
