It’s Thursday afternoon. For days I’ve been wanting to write something — anything. It isn’t for lack of ideas that I’m not getting anything down. It’s more a lack of ability to focus. This isn’t a problem I’m used to having, yet more and more, I recognize that exactly is what is going on. I wonder if it’s a sign of aging.
Or, perhaps it’s just my willingness to be distracted because it’s better than sitting here pecking on about something currently permeating my life. It could be the draw of tidying up my flower borders, moving a few perennials around, or mulching a few spots that dry too fast. That’s all so satisfying when I’m lost in the task, where as writing about something I live each day, isn’t.
I tell myself that I don’t have to write it down, but when I choose not to it plagues me while I’m doing all of what I just described above. The only thing that turns it off is the couple of hours of television I watch in the evening. It shows up in conversation with my husband in the morning over my coffee, and his tea. It’s in texts, and emails, on social media, and casual conversations with caring friends and neighbors, or old friends who prefer telephone conversations. There truly is no escaping it.
Escape what?
My mother. My soon to be 89 year old mother. My mother and the diminishing state of her brain.
I can feel my chest tightening as I write and fight the urge to push the screen of my laptop down to head outside. I’d rather not confront the feelings I have about her so it’s easier not to. It’s easier to do something practical I can get near instant gratification from. I’ve learned though, that dealing with what’s in front of me is always the better choice to sort something out. Unfortunately, there’s no fixing this.
When my mother arrived two and a half years ago, nothing went as I imagined it could. Her life with us lasted not quite six months. The relief my husband and I felt once she was settled into her memory care residence was palpable. Since that time, I have grappled with a variety of emotions. Guilt is most prominent — guilt about her not being with family. Remorse is another strong emotion which is related to her condition. Although she has been diagnosed by two doctors as having dementia, she never sought the expertise of a specialist when it might have made a difference. She avoided seeing her primary care physician when it was necessary to have tests done, or to have medicine prescribed. The disease itself was her biggest accomplice in avoidance. If you can’t remember something, no matter how important, then you don’t have to do it. And her husband was of little help–the one who texted my sister and told her, “You better come get your mom. I’m outta here.” And he was. A month later, he was dead of metastatic brain cancer.
Until recently she has had quite a bit of spunk — but not always in a good way. Still, the caregivers at her residence tell me she makes them laugh when she’s not cranky about doing something she doesn’t want to do. She doesn’t rely on a walker or cane and tends to be overly exuberant during stretching and exercise time in the mornings which can cause problems. Her back bothers her, her right knee is bad, and as she tells it, “My big toes are frozen.” All of these ailments could have been looked after years before they became the painful body parts they are right now. She only knows they’re painful when she feels a stabbing sensation. Once the pain is gone she has no recollection of anything being wrong. If you can’t remember something, did it ever happen?
I received a call from her residence last week. The RN on staff told me she was going to call my mother’s doctor about pain in her right leg. She wondered if a muscle relaxant might help. A couple of days earlier, I’d picked my mother up for a dental appointment which is yet another related issue. She mentioned her right leg hurt and motioned to the area around the hip as she stepped up into my SUV. I wondered whether it was sciatica. I told the RN that there was no way the doctor would be able to squeeze my mother in to be seen on that day. In the past, the office has told me to take her to the ER. That’s what I ended up doing.
Seven hours later, I deposited my exhausted mother back at her residence with information for the staff gained from a CT scan. She had fallen. There was a contusion on her right hip. No one saw it happen and my mother couldn’t remember. Only vaguely did she say something about being on her back and how lucky was it that she didn’t land on her face. I don’t question her. It isn’t helpful and at best her usual response is an immediate “I don’t remember.”
It’s Friday afternoon. I did escape my laptop yesterday and spent several sweaty hours in the yard pulling weeds and giving a few shrubs a vicious trim. At one point, my frustration with my mother’s condition welled up and tears came. I imagined my mother, my grandmother, and my great-grandmother telling me to suck it up because that’s what they did. The problem with that is the emotion has to come out at some point or it builds up. That would be me in that moment, staring at the peony tubers I accidentally dug up. The only peony in my garden of that particular near magenta color. The one that had five huge blousy blossoms on it for the first time in seven years. Tears.
Earlier, I picked my mother up 10:15 for a follow up visit. Although I called yesterday and left a message explaining this, she wasn’t ready and there was no time to change her clothes or to make sure she was clean. I could tell her hip was still bothering her but the bigger issue for the doctor visit was about what was found on the CT taken when she was in the ER. A mass was growing in her abdomen. It’s unclear whether it’s inside or outside of the uterus. An ultrasound is recommended.
When I learned of this after receiving the report, I spoke with my husband, then my sister. The discussion centered around what to consider depending on whether the mass is benign or malignant. Some may say, well, we’ll cross that bridge when we come to it. I’m the one who says, no. I want to know everything so that when we get to the bridge we’ll know whether to cross or take the long way around.
My mother and I were sitting in the small examination room. Her doctor is on vacation so we were to see a physician’s assistant instead. I recognized the woman from a previous visit. I wanted to remind her my mother has dementia, but surely there’s a fluorescent flag across the top of my mother’s digital record, I thought.
“Tell me about your pain, Mary,” the PA began.
“I don’t have any pain,” my mother responded immediately.
I told the PA the story about the ER visit, the fall, the pain that radiates down her right leg, her instability, the frequent need to urinate. I explained the main reason for the visit and asked what kind of ultrasound would be done. As expected, a vaginal ultrasound. I wanted to know why not external instead, as a pregnant woman would have, knowing the answer but wanting to save my mother from an experience she may not appreciate because who knows when she last had a pelvic exam?
With utmost patience, the PA explained to my mother the difference between the two types of ultrasound and why one was better than the other. Neither would help determine whether the growth is cancerous or not because that requires a biopsy, but the shape of the mass is irregular so I wonder.
“Which one hurts the most?” my mother wanted to know. She endures spinal pain daily from compressed vertebra yet wants to know if an ultrasound is painful. It is in moments like this that I feel completely helpless, frustrated, and angry about what is happening to her brain and the effect it is having on her. I told her it isn’t going to hurt so not to worry. “Well I’m going to worry about it if somebody’s putting something in my hoohaw!” she snapped, giving me a side eye.
The PA and I exchanged glances as she explained that she’d order the ultrasound and that we’d be notified about the appointment. As my mother rose from the examination table, I noticed a stain on the paper lining. She’d messed herself again.
Her mood shifted. She had heard things she understands well enough but it adds stress to her simple life. She was embarrassed about soiling her pants. Her blood pressure spikes alarmingly under these circumstances and she becomes unsteady. I had to hold onto her as we walked out, stopping several times to ask if she wanted to sit down. She became confused about where she was and why she was there. As we pulled away from the parking lot she wanted to know where she lives. “Just this way, Mom. Five minutes down this road.” Knowing what she would say next, I continued before she had the chance to ask. “You have a flowered bedspread and your bed sits against a large window where you can see out into the garden…”
Back at her residence, I urged her into her bathroom and told her to check her pants. As I gathered clean underwear, leggings, and a shirt I heard her confirmation. “Yep. I crapped.” I glanced around the corner to see that she had already pulled her pants back up.
“Mom. You need to change your clothes. Those need washing.” I ran hot water over a wash cloth and squirted body wash onto it, lathering it slightly. “Use this to clean yourself.” She followed my directions but grumbled about missing lunch. “You still have twenty minutes.” I told her, surprised she knew it was lunchtime when so many other details in a day leak through her brain like sand through a sieve.
“Gonna have to rinse this off.” She waved the soiled wash cloth in my direction. There were no gloves available and I had no intention of rinsing it off.
“Put it in the basket with your dirty clothes then wash your hands.”
“Who’s going to wash my clothes? They always wreck them.” She was clearly getting worked up at that point, and speaking loudly.
“Shhhh. You’re going to wake Carly up.” Her roommate had been sleeping soundly when we arrived.
“So what. I don’t like her anyway. She never talks to me.”
“That’s odd, Mom. Last time I was here we were coming from the ER, I think, and she was waiting for you, worried about you. She came over when she saw you and gave you a big hug. She looked right at me and whispered she loves you.”
She aimed her watery pale blue eyes at mine. “It’s time for lunch. You can go home now.” I told her to put her shoes on first and then I’d go. She ignored my offer of help and suggestion that she sit on the ottoman to make the task easier. Instead, she leaned against the high mattress on her bed then bent from the waist to pull her shoes onto her feet. I imagine it had to hurt her back but she said nothing about it.
On the way to the dining room she put her arm around the back of my waist and told me she loves me. “What would I do without you?” she asked for what seemed like the tenth time that day. It’s more something she wonders about practically than a sentiment. I tell her I love her too and there would be someone assigned to be legally responsible for her, just as I am.
As I waited for someone to let me out the front door, I watched her make a bee line for her table in the corner of the dining room where she’d sit with her roommate and two other women I’m not familiar with. She would finish every bit of what is put in front of her, but won’t remember what she ate once she has scraped the plate clean and deposited her bunched napkin on top of it.
On Saturday morning over our hot beverages I mentioned to my husband the sadness I felt while digging in one of my borders the day before. He was curious about what caused the sadness. I began to explain what I thought at the time, but in the present moment I realized I had been way off. Emotion welled again and that indicates to me what the real issue is — the one that is easier to handle with irritation or even anger at times. He wanted to know if it stems from the fact my mother is gone. In other words, she is no longer the person she once was. I acknowledge that, but it’s more complicated. I told him that when something is weighing on me, I talk to him when once upon a time, I’d confide in my mother. But I’ve realized that never really happened. Rarely did I share the worrisome bits of my life a daughter might share with her mother. It was a story I told myself. In that moment with stark clarity, I could recall the few times I had. I can count them on one hand and still have one or two fingers left to assign. A montage of the snapshots of the two of us in those moments ran slowly, each image a hesitation before the next slid into place.
In the first, I’m in my early teens. I’m standing at the stovetop in our late fifties galley kitchen stirring something I’d made for our family dinner. My siblings and I had recently returned from time away with my paternal grandparents and my father whom my mother divorced when I was very young. The visit had been a lot of fun and I was sharing as much as I could about it. My mother didn’t like that we had enjoyed spending time with our relatives and my father in particular. She began to say negative things about him, primarily– that he never paid her enough money to support the three of us after the divorce. It was at that moment I was suddenly brave enough to blurt out that my stepfather, her husband of seven or eight years, had sexually abused me. He came into my room one night, lay down on the floor next to my side of the double bed my sister and I shared, and reached under the covers while I was sleeping to molest me. The snap of the elastic on my underwear woke me up. My mother said nothing. I remember her standing next to me as I cooked, but she never asked a single question. There was no embrace, no sign of worry or concern. It was years later that she explained she called one of her sisters because she didn’t believe me and wanted her sister’s opinion about whether it was possible. It was only after my aunt explained that he had molested her as well that she accepted I was telling the truth. There was no explanation, no apology. Soon after, my stepfather was gone.
In the second image, I’m fifteen, maybe sixteen. My mother is in bed and I’m sitting on the floor next to her leaning against the wall. The context is lost in the years that have passed but I recall telling her that having a baby wasn’t a scary thing to me, but how the baby gets there to begin with very much was. She didn’t respond to me. She left me with my fear and had nothing to offer me that would help me not worry about having sex for the first time.
The last image is of a time decades later. I’m in my kitchen standing at the counter facing my mother and her fourth husband who are perched on counter stools. She’s in an animated mood, enjoying a beer while I prepare the meal I’ve invited them over for. My husband and I had just returned from a trip to England and I was very much missing being there. I remember trying to explain to my mother that I often felt as if I didn’t belong where I’ve always lived — that I have existed in the wrong place my entire life. There are very strong emotions tied to that idea and I was embarrassed to realize my voice was wavering as I spoke. My mother noticed it immediately and interrupted me making unnecessary attempts to wipe the countertop in front of her with her bare hands. She laughed, but was clearly uncomfortable and avoided looking at me. “Oh, my. Well, okay then. Let’s not get too serious here.”
There should be an ending to this, but there isn’t one. There probably never will be because my memories seem to be etched in stone. I carry mine and as many of hers as I can so that when she asks about something, I can tell her the story.
At some point, she will no longer be a five minute drive away. There will no longer be a need to see if her clothes still fit, or require stain remover. I won’t have to wonder if she’ll actually wear the disposeable underwear I’m about to purchase so it’s easier for her to take care of her personal hygiene — or whether she will be assisted in remembering. Hopefully, I’ll be left with the mostly good memories I have of her and the fun we had so many years ago.
I can hear her say, “I mostly live in the moment now. I don’t look back.” I don’t tell her it’s because she can’t and she just doesn’t realize it.
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