Beckah DeYoung is a Special Education teacher and Advisor at IDEAS Academy. She wrote this piece of personal writing during the UW-Milwaukee's Invitational Summer Institute of the National Writing Project, which is a nationwide professional development opportunity wherein teachers research writing in the context of becoming writer themselves. This is a pice of Beckah's personal writing.

Memories

It started with pills: tiny, circular, blue tablets. White, long ovals. It ended with pills: taking too many, not taking them at the right times, taking the wrong combinations; all of these or some of these, we don't know. What we do know is that it changed her; spiralling into 6 years of confusion, injury, illness, and a transformation of being.

My Grandma DeYoung was not the "fun grandma." She only lived 15 miles away, so throughout my childhood and adolescence we visited often; each time it was filled with the small sense dreaded boredom. What were going to do when we were forced to spend time in a place without cable? She didn’t need cable though, and if it weren’t the news, PBS, or the occasional I Love Lucy episodes, she wouldn’t have even had a TV. There were other passions that filled her days. All her life she was a hard worker. She held many jobs on top of being a housewife. She didn’t have time with frivolous pastimes or unnecessary additions. So, even when she could afford them, she didn’t see the purpose. Thus, no cable or in later years no internet.

She didn't take us shopping or buy us fun, new things. Instead, we would drive around strategically to pre-mapped out garage sales on Saturday mornings. Hunting for the best deals or looking for those hidden treasures. She didn’t have the most recent, sought-after games and the ones she did have were left over from when my dad, aunts and uncles were kids. They were old and worn out and definitely not what a 10 year old would want to play with. They fostered creativity and forced us to step outside our young, naive and selfish minds. The slinkies that slithered and plopped down the stairs would hold our attention briefly, before we turned to the next antiquated activity. The Lincoln Logs and Tiddlywinks were a little better at holding our focus, allowing us to build doll houses and other random structures while we passed the time.

She was the grandma that was practical, a daughter of the depression and a mother of 9, she lived by the adage of scrimp and save, everything. I remember her having bags of bags. Those blue or pink bags that the newspaper came in, she saved those, as well as the ties that came with them. To this day, I am not sure why. She didn’t have an animal to have to pick up after, nor did she have any other evident need for them. She just never knew when they would come in handy. Same with food. We cleaned out her freeze one day and there was rabbit from 1957. Freezer burnt and oddly colored, but there it was, ready to be eaten. Or, just simply in there because it had been forgotten years before after a visit from her dad.

Reading was her passion. She would read anything, but she loved religious texts and romance novels. She would spend hours in her green recliner rocking back and forth reading the Bible, devotionals, and The Catholic Herald. She also would indulge in the occasional romance novel.

When she and my grandpa got divorced, they continued going to the same church, but by unspoken agreement, went to different masses. She always went to 5:00 mass at St. Dennis. Every Saturday night, she would make sure she was there, rosary in hand to celebrate the mass with her fellow parishioners. She was a woman of great faith, that same devotion was transferred to her children and granddaughters.

Another passion was gardening. She loved her yard and did everything in her power to make sure it looked perfect. She would send hours in her gardens or mowing the lawn and expected her neighbors to do the same. As a child, I can vividly remember spending hours in the yard, spoon in hand, digging up dandelions. If you just pull them out of the ground, the roots stay and they will come back. You have to actually dig them out, roots and all. It was never acceptable to take the seeded dandelions and blow them, either. Like most kids, I thought it fun to watch them being whisked away by the wind. I soon learned though, that when they floated away, into her yard, they would breed new little dandelions just waiting to be dug up.

When my grandparents got divorced, my grandma bought a storage facility, the warehouse, to make a living. She was left with little to anything and needed a way to create income for herself. My dad became the property manager and she was the boss. She knew what needed to be done and she would help with all of it. She wasn’t afraid of anything either. When the warehouse needed a new roof, she was up and down that ladder all day, everyday without a care in the world. She would don her tool belt and bandana and work side by side, hunched over, with my dad and other family members. There was a shortage of knee pads, so instead she wrapped multiple towels around her knees to protect them from the ruggedness of the roof. When it got cold, and she was frequently cold, she would put on her winter jacket and scarf and continue working. Meanwhile, I was terrified to step foot on the ladder, let alone climb up it to get on the roof. She was determined and didn’t let anything stop her. I remember thinking I could be like her.

The warehouse was pretty self-sufficient, especially with my dad taking care of letting people in and out of their units. She soon found success in the warehouse and bought an apartment complex. Now that she had her own rental property, she was even more busy. She was extremely particular about the details. When she first bought the complex she went through and touched up all the trim. The people before her had gotten paint all over the trim, she proceeded to scrape every trace of paint from the trim and then fully refurbish them with new stain. In addition to the aesthetics of the apartments, she would add little personal touches. When new tenants moved in they would always find a small basket of goodies in the bathroom as a welcoming present. These little touches made her unique and were just another piece of who she was.

So was her life, day in and day out. Remembering back, I realize now, she never had a problem with what some might call her “simple life.” She had her faith, her family, her work, and her garden and she felt blessed and content.

As time went on, as time does, she grew older. Unfortunately, her body didn’t agree with her mind in regards to her work ethic. Due to a back injury and subsequent surgeries, she was in constant pain. That combined with other medical issues led her to take multiple medication on a daily basis. One of those medications, Methadone, caused an addiction requiring her dependence on the drug until the day she passed away. As her health concerns evolved, they required more trips to doctors, unfortunately many different doctors. At the time, reporting and communication systems were not up to par and miscommunications occurred regarding the medications she was taking. Too many different medications, too much of specific medications, medications to mask side effects of other medications, all leading down the road to her dependence, on drugs and other people. Throughout her life, she prided herself on not being dependent on others. She was a survivor, she did what she had to do to make ends meet and she had the spark of sass that made people stand up and take notice.

Slowly, she and her circumstances started to change. My dad would receive phone calls at all hours of the day with her sobbing, telling him she was scared. He didn’t know what was going on because he was not her primary person at the time. My aunt had taken the responsibility of taking her to appointments and visited her daily. When the calls started, my dad was concerned, obviously. It was soon found that she wasn’t taking her medications regularly. With the Methadone, this sporadic consumption was leading to withdrawal symptoms. The doctors had assumed she was depressed and put her on antidepressants, but this did not fully help, she needed to take her medication regularly.

When the phone calls started there was still hope. Things would improve, they just had to make sure she kept taking her medication. As soon as she missed one day of Methadone, her mood would plummet and the phone calls would start again. But after a few days, her mood would even out again. Family would call at night to make sure she had eaten supper and taken her pills and she would say she had, but then the next day when my dad went to visit, the pills would still be there. There were signs posted around her house remindering her to take her medication, they worked at first, but eventually, they were ignored or went unconsciously unnoticed. By this point, my dad was already going up to Madison at least once a day to see her. He would make sure she had taken her medication and eaten something. But this type of care could not continue. She was more confused and forgetful, which only escalated when she was in pain or had forgotten to take her pills.

Near the beginning of January 2010, my grandma lost her independence. Disregarding the family drama involved in the entire situation and subsequent events, my parents decided it safer for her to live with them; and she did, for just over 10 months. After that day, she would never live by herself again. My empty-nester parents suddenly found themselves with the equivalent of a smart 2 year old on their hands. She could come across as cognizant and coherent, but after 5 minutes of conversation, the other participant would realize they were in a circular dialogue that might never end. Questions were repeated ad nauseum. Wednesdays were always the same for my mom, “When will Dave be back?” she would ask repeatedly while my dad was at choir practice. The answer remained the same, “He is at church right now. He will be back soon.” She would go back to her book or move on in the conversation, but a few minutes later, “Where is Dave?” and the conversation would repeat.

Another questions they both fielded continuously was “When can I go home?” She believed she was capable of living on her own and did not see the need to be trapped in the horrible place that was my parent’s house. There were days, until her car was sold, that she would go outside and sit in her hatchback Acura, waiting for someone to give her the keys so she could leave.

Through the temper tantrums and repetitive conversations, there were tender moments, sparks of happiness and independence. She came with my parents to move me into my first apartment in Sheboygan. She directed boxes and furniture or dozed on the futon. Once everything was moved in, the final addition to the apartment was my cat. Once we brought her in, she promptly ran to hide under the futon, terrified by the changes she had been subjected to. Showing a spark of the caring and curious women she once was, she got on the floor and tried to coax my cat out from under the couch, poking at her with her cane and telling the “kitty” it was ok to come out.

Yet, there had to be a breaking point. My parents were both stressed and their lives had transformed into a caregiver role they never thought would happen. One blustery day near the end of November, my grandma got infuriated, deciding that if nobody was going to take her home, she would just go herself. She walked out the front door and proceeded down the road. In the city this might not have been as concerning as it was, but parents live on a highway, 15 miles from her home. She had walked out of the house without her cane or a winter coat and was making her way down the busy road at a slow, but steady pace towards Madison. My dad got in the car and drove after her, slowly pacing her for ¼ mile before she agreed to get in. Within the next month, she would move into her last home, Heritage Senior Living. 

The first month at Heritage was rough; for her, my parents, and the staff. She was even more angry to be placed at this “home” instead of where she was familiar. She asked my dad daily if she could just go live with them again or when she could go home. In the course of the first month, her cane became a weapon for her aggression. She broke the mini-blinds in her room twice and made an unintentional work of child-like art on the walls with the black rubber of the cane’s bottom. She would sit in her glider and strike the walls and floor, muttering angrily under her breath.

That past Christmas I had made a scrapbook for her with a page about her grandparents, parents, siblings, and each of her children. She would look through the book, remember, smile, ask questions, and be her. Soon after moving to Heritage, she was going through the book and came to my dad’s page. According to the staff, she made a couple comments about hating him and took the page out, tore the pictures off it, and folded the paper into a little square, putting it in the back of the book. This is where it remain until her visitation where it was smoothed out and put back in its rightful place, but now with a story attached.

She lived at Heritage for 5 years, in which time it eventually became a home. The staff became family and her room evolved into a lovely remembrance of the people closest to her and items she treasured. My mom made curtains for the windows to avoid the destruction and cost of more mini-blinds, beautifully simple yellow ones that brightened up the stark room.  Her walls slowly filled with pictures of family and friends. As she made art projects and went on adventures with the other residents, her new life and old merged into a gallery of love and support. My favorite picture on her board was her with the children at La Petite Daycare. Residents went there weekly to visit and read to the children. The smile on her face as she interacted with the young children was the woman I remember from my childhood.

She continued to enjoy reading. She would sit in her glider and reread the same books over and over. She didn’t notice. It was a new story every time she picked one up. One day, a CNA walked in and she was reading her book upside down. The CNA asked her if she knew her book was upside down. My grandma responded unphased, “I just thought it was in a different language.”

One of her greatest struggles as her mind slowly slipped away was that she never lost her need for independence and her drive to work hard. She still felt the need and desire to work and be busy. She wanted to do dishes and set the table. She wanted to earn her keep. She would still bring up working with my dad and ask when she could come and help him at the apartments. “At least I could sit and watch.” My dad would then ask, “Would you be content with just watching?” She would grudgingly reply “Well, no. I can do something small at least.” So to help give her a purpose, my dad came up and made large, wooden planters for their courtyard. The residents planted tomatoes and other vegetables and flowers, giving my grandma a place to work. These remain at Heritage to this day as a memorial to her and her work ethic.

While at Heritage, she still took part in all the family holiday events. Sometimes it was too overwhelming, but she usually held her own. This past Thanksgiving, the family decided to volunteer at a soup kitchen. She was adamant that she be able to help out in some way. She wanted to be back in the kitchen or out setting the tables in the dining room. We assigned her as head greeter, but she informed us that next year she wanted to do more than just sit there because she could help in some way. Later that day, she needed a break from the chaos that is our family. My uncle gave her a small game cookbook and she proceeded to read that thing front to back, putting in small anecdotes and commentary throughout. She would read the recipes that caught her attention and let us know what she thought of their ideas. I learned that people shouldn’t really eat Opossum, but rabbits are pretty tasty.

What comes next are the final stages. Over 5 years she slowly decelerated. The UTIs leading to increased confusion and falls. The broken bones and hospital stays. The slow deterioration that occurs when one hospital stay leads to two, leads to three, then four. She would gradually regain her drive and get back to her activities. But after each stay it took longer and longer. The last two hospital visits happened too close together. She fell and broke her arm. This led to increased pain and the dependence on a wheelchair. She was making stride though, the pain was gradually easing and the cloud of increased confusion that it had caused was lifting. She wasn’t confident anymore though. She refused to walk, she was scared.

Then, came the next and last trip to the hospital. I remember watching a movie with my parents and them getting the call that she had fallen out of bed and hit the edge of her dresser. The staff found her in her room on the floor with a gash on her head. They had called the ambulance and it was on its way. My dad rushed to the hospital and my mom followed soon after. Visiting the hospital later, it was evident that this was the worst yet. Seeing my grandma, once strong and capable, reduced to a frail, battered, and broken version of her former self. The bruises angry on her face and her body stilled by the sedation. Hearing from my mom how she had cried repeatedly pleading to go home, I imagine what that must have done to my parents and uncle to witness this and attempt comfort. Wishing I had been there to help.

She was in the hospital for many days before she was released back to Heritage. Within this time, she began to improve and started fighting subconsciously. Later in her stay the doctor came in to do a check up and asked her to breathe deeply. She replied, “I don’t need to breathe, I am already dead.” The doctor asked her how she would be talking to him if she were dead. She then responded, “Well, you're dead, too.”

But even with the return of that fight and sass, once she was back at Heritage she wasn’t the same. She stopped eating, refused to take her medication, and some days wouldn’t even drink her beloved coffee. It was her way of taking control of her life. She had never wanted to take all the medication but now in her diminished cognitive state, she couldn’t be reasoned with. Staff was calling my dad daily to come up and help get her to take her medicine and eat. My uncle would come after work to visit and try to persuade to sporadic results.

The first email came on March 18.

After several conversations with the staff at Heritage and Dianne, it has been decided to seek help for Mom with Agrace HospiceCare. This is being done due to Mom's deteriorating condition and the need to have a new set of eyes on the situation.  It has been a very hard, trauma filled 3 months for her and it is the hope of us all that something can be done to improve Mom's quality of life.  At this point it is not good.  With her limited mobility and the lack of desire to eat, her weight is now down to 103 lbs and the dementia is taking a firmer hold on her.

At this time she has her good times and bad times, but the bad times are becoming more frequent.  I would like to encourage all of you to take the time to see Mom before she deteriorates any further.

I was going to be home that next weekend so my parents could take me to the airport. I had a trip planned for spring break. I was going to be out of the country for a couple of days in Canada and then head to Seattle. I remember selfishly thinking, “Not again. I am going to have to cancel another trip.” I had cancelled a 10 day East coast trip just 8 months earlier when my grandpa unexpectedly passed away. I talked with my mom and asked what she thought. She was adamant that I go as planned. After seeing my grandma that Friday night, I made them promise they would call me no matter what and I would get home any way I could. I had it all planned in my head for an emergency return. She fought though. She didn’t improve, but she had leveled out. She hadn’t given up yet, not completely at least.

A couple of weeks after spring break, I came home for another visit and stopped by Heritage to see her before even going home. I wanted to see her on my own and spend some time with her. We talked for a little bit and took a ride through the halls in her wheelchair. Throughout the visit, we had the same conversation about making soup for supper. I was supposed to get the chicken and back it so it was ready. We had that same conversation about 10 times before she slowly became more agitated. I have heard my grandma cry before, multiple times, but there was something different about it this time. The true agony of it ripped my heart open. I have never felt so helpless before. What do you say to someone who doesn’t understand what is happening to them? What comfort can you give someone who doesn’t know who you are anymore? On my knees, I sank onto her bed and tried to hold her as close as possible and whisper in her ear that it was ok, hoping she would give in to the pain, letting the medication slowly take effect and allowing her to go to sleep. But she fought. She fought to understand, to stay awake, to be present. I wonder now if she fought or if her body did. She kept repeating, “Baby sleep. Baby sleep.” I will never know what she meant by that, but in reality it is irrelevant. What is relevant is those where the last words I would hear her speak. The next time I saw her, she was noncommunicative.

Fast forward two weeks: In that time daily phone conversations had occurred and it appeared things were holding steady. There might still be hope, after all she was a fighter. Had been all her life. She might pull through. Miracles do happen. But then, Tuesday’s email came:

April 22

Hello Everyone:

I received a call from Heidi, the nurse at Heritage, informing me that Mom is barely eating or drinking anything of substance.  This is a sign that Mom's decline is accelerating to the point that they are unsure as to how much time she has left.  At this time she is basically bed-ridden and sleeps most of the time.  If you wish to visit her and she is sleeping, feel free to wake her if just to let her know you were there.  If you have any questions, you may call either Dianne or me for more details.

A quick response from my uncle immediately followed with a second plea:

I too encourage all of you visit mom sooner than later as she is slipping away at an alarming rate. I am visiting her now and she is very scared, not able to communicate very well, and even though she rarely knows who I am, I believe she still appreciates me being there, and will appreciate all of you as well.

The emails, having arrived in the middle of a work day, elicited a lunchtime phone call. Things had escalated slightly, but it wasn’t necessary for me to come home. The next day, another phone call. Same conversation: we don’t know much, it is a waiting game, it is up to you. That night I had a meeting in Oshkosh at the university. I left our staff meeting early to rush to the meeting, with only my phone, a notebook and writing utensil. On the way, my brain was in a million directions, but it kept coming back to one key point. I needed to be home. I felt it, in my heart and soul. That is where I needed to be. I was already 45 minutes closer since I was in Oshkosh, so there really wasn’t an option in my mind. I was going.

When I walked into her room, my heart crumbled. The woman laying in that bed wasn’t my grandma. It was a skeleton of who she once was. Her bones protruding, face ashen, she lay fitfully in a darkened room. I sat on the bed with her and took her hand, letting her know I was there. In hushed tones, I spoke with her about whatever came to mind, but mostly just telling her I loved her. She continued to fidget on the bed, taking my hand and waving it around sporadically, unaware of what she was doing, but sensing my presence.

I had decided upon working in her door for the first time that night that she wasn’t going to be alone anymore. We would take shifts and someone would be with her at all times. My mom and sister came and stayed for a while, but I sent them home after we made plans for a shift change. Selfishly, I wanted that time with her. To sit and just be in her presence, because I knew it would be the last time I would have that private moment with her. Soon, the family would descend and everything would get chaotic. Sitting in the darkened room, holding her hand while she slept, I reflected on her, her life, and how much I wish I would have known more about. Those quiet hours will be among my most treasured memories of her.

When Marci came to relieve me at 2 that morning, I knew what needed to be done. I was supposed to teach in the morning, I had meetings and student activities that needed my attention. All those plans and school obligations flew out the window though, as they should. A drive to Sheboygan, packing, sub plans, and a drive back to Madison made those 6 hours a feat only adrenaline could spur.

Once back in Madison, the next 48 hours were a blur. An abstract painting reminiscent of Pollock, splattered with bits and pieces of memories and emotions. Family. A lot of family. Nurses and CNAs. The most wonderful, kind-hearted women and men I could ever ask to be taking care of my grandma. People filed in and out of the room saying their goodbyes and sharing memories. We continued to take shifts and my mom mandated I take a nap at some point. I think I did for a while, but my brain and heart stayed in that dimly lit room with my grandma.

Thursday night was a sequel to the scene that had played out in a hospital room not 8 months earlier with my grandpa. The vast majority of the family was in attendance, 25 of us all crowded into a 12x12 room, surrounding her bed. She laid in bed covered with her Mother Mary blanket, rosary in hand, encompassed by the love of her family. We pulled out our smart phones and sang her favorite hymns. How Great Thou Art will be one of those songs for the rest of my life. Unlike my grandpa, she did not pass while we were singing. In fact, she fought and held on, for what we are not sure. It wasn't until the following day, at 1:24 in the afternoon, that she took her last breath and left us.

She was a strong, amazing woman. One that I didn’t give enough credit to growing up.  A woman I wish I had gotten to know better over the years, but still I will always cherish the memories that I have. One that I respect and love with all my heart. A woman of faith, hard work, and kindness that I strive to emulate.

This is for you grandma, How Great Thou Art.