Category Archives: Mom

Sisyphus

The plan was simple. I was to take my mother to Jacksonville on Saturday for the wedding of her godson, the son of her oldest friend, and then spend the night on the same property where the wedding was being held. I felt clever enough to transport her from Point A to Point B and back in a 24-hour period. I even brought a couple of books, on the theory that I would execute my duties so competently I would have time left over to read while gazing at the ocean.

Instead, like the clever Sisyphus, I spent the weekend pushing my mother up the hill of my own hubris.

We left Tallahassee at noon. The wedding was scheduled for 5:00 at Amelia Island, a three-hour drive away. We stopped for lunch at 1:00. Mom preferred to eat at the restaurant, and I thought that with my help we could be in and out in a reasonable amount of time.

Nope.

Most people can cope with the level of stimulus generated by a busy fast-food restaurant on a Saturday afternoon. Not my mother. She was completely overwhelmed by the noises, the lights, the colors.

I pushed.

I ordered for her, helped her sit down, brought her food, filled her drink, and begged her to eat. She sat, staring in the direction of the TV without really seeing it. I had to coach her through every bite. It took over an hour.

I pushed.

Back in the car, I realized that we were now in danger of being late. We pulled up to the hotel at 4:00. Of course, check-in was in the main hotel, and our room was in a distant building.

And here’s where I made my biggest mistake. I had assumed that a normal hotel setup would be fine for mom. She walks slowly and with difficulty, but she does not use a walker or wheelchair. However, there are some very real differences between a truly accessible space and a “normal” space. At 4:20, when I pulled up to the building where our room was located, I almost cried. All I could see were stairs. There were stairs to get to the elevator, which was also located at the back of the building. There were more stairs from the elevator to our room.

I pushed.

I got her out of the car and into the room. I got both of us changed and back downstairs to catch the shuttle to the ceremony site. We arrived at 5:05, just ahead of a golf cart full of bridesmaids. The shuttle dropped us 50 yards from the seating area. The distance stretched before me like a dolly zoom shot from a Hitchcock film.

I pushed.

The ceremony was lovely, and offered me exactly 20 minutes to breathe before tackling the next challenge – another 50-yard walk over unpaved ground to the reception site. We put mom on a golf cart, a process that took three adults and 10 minutes of coaching. Once at the reception, we deposited her in a chair. She did not get up for the rest of the evening. After dinner, we wrangled her back onto the shuttle and I somehow got her up to our room, undressed, and in bed.

Sunday morning, I woke up pushing.

I got her out of bed. I packed all our things, dressed her, and loaded the car. I asked if she was ready to go.

“I’m ready to go back to bed,” she pouted.

I made her use the restroom before we left. The toilet was low, and configured such that I could not stand in front of her to help her up. The awkward angle, combined with her inability to assist, caused me to wrench my back trying to keep her from falling to the floor. I spent the drive home with increasing stiffness and soreness in my mid-back.

Yet I pushed.

I arrived home just after noon and I was a wreck. I had spent every waking moment of the last 24 hours pushing my mother, pushing her to move, pushing her to focus, pushing her to cooperate. Even when we’re at home, I have to push her to drink water, push her to use the bathroom, push her to eat, push her to bathe.

I’m glad we went. It was the right thing to do. The wedding was lovely. But the amount of work required to execute a relatively simple plan was staggering. I consider myself to be pretty smart, but I was humbled by the number of factors I failed to adequately consider. And while I would love to say, “Next time will be better!” I honestly don’t think there will be a next time.

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The Things We Carry

I spent much of spring break at my mom’s house in Jacksonville, cleaning out two large storage closets, aka The Twin Pits of Decluttering Despair. They were the final frontiers in the massive undertaking that has been clearing out my childhood home. And while I am relieved to have pushed through to this point, I am also overwhelmed with sadness at the wasted potential I saw as I dug through stacks of paper and boxes.

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(Behind that door: more stuff.)

My mother almost certainly suffers from a mild hoarding disorder. Unlike many hoarders, she does not shop, and does not Dumpster dive, and generally isn’t acquisitive. However, once items enter her house, they never leave. I started cleaning while she was in the hospital the first time, back in May of 2015. I discovered newspapers dating back to 2009 stacked on the kitchen table, a decade’s worth of telephone books, and every bank statement she’d ever received (including canceled checks). I discovered six closets packed full of clothes, in sizes ranging from 14 to 22, in decades ranging from 1980s to today. But she only ever wore the same three pairs of pants and five shirts – which were draped on chairs in her bedroom.

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When my brother and I lived at home, my parents kept things reasonably neat. I left home in 2002. My father died in 2003, which was also the year my brother graduated college and moved out. Our house went from being comfortably full to achingly empty in the space of one year, and I have a suspicion that my mother’s hoarding ramped up as she tried to fill the void in her heart.

The process of sorting and purging and organizing has been, quite frankly, depressing. So much of the clutter is just redundant waste. My mom had dozens and dozens of towels, most of them monogrammed. But the towels, and the monograms, belonged to long-dead family members – my mother’s mother (died 2008) and my mother’s aunt (died 1986). My mother has just a few pictures of her aunt, but 15 of her towels. Why? Why did she feel it was her obligation to carry the dead woman’s textiles? Similarly, she had sheets for full and queen beds, despite not owning beds in either of those sizes. I used the sheets and towels as packing materials, and STILL sent an entire vanload to Goodwill.

Some of the things I’ve had to get rid of were amusing, like the meat slicer my parents received as a wedding gift. It was still in the box. They also had a case of eight track tapes. Neil Diamond. AW YISS.

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I was sad about the items she never allowed herself to enjoy. I threw out pounds of food gifts she’d never opened – jams and cookies and chutneys and preserves. She raved about her friend’s homemade chocolate sauce, a jar of which she received for Christmas every year. There were twelve jars in her fridge. Only one of them was open.

I found landscape plans for the property which had been drawn up for the previous owners. A dresser drawer was filled with old film reels from someone’s world travels. When I asked mom about them, she told me she found them in the house when they moved in. So she kept them. Because of course.

At the back of the large closet, I found three cardboard moving boxes that I’m pretty sure hadn’t been opened since my parents moved into the house in 1983. One of them contained baby shower gifts from 1979, when I was born – beautiful embroidered collars, a sterling cup, hand-knitted blankets, a magic hanky. Each was still in a gift box, wrapped in tissue, with the cards attached. These made me inexplicably angry – not only did she NOT use them when I was a baby, she didn’t even tell me they existed so that I could use them for my own babies. They just took up space in her closet, and her life, for no purpose whatsoever. It’s maddening. I know this is part of a real psychological problem, but it’s hard not to be frustrated.

Most upsetting are things that she’ll never be able to tell me about – photographs of vacations she can’t remember, objects that were carefully packaged and preserved, but now she doesn’t know why or when. If we’re all stories in the end, hers is unraveling.

My biggest challenge was resisting the impulse to keep everything that might be meaningful, that might be useful. My mother kept things that other people found beautiful and useful. She kept things because people told her she should. She kept things because people told her they were valuable. In time, those things began to bury her, and now it is my responsibility to catalog them, understand them…. and decide for myself what to let go. In this endeavor, help me to not be my mother’s daughter.

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A Glimpse

It has been seventeen months since my mom was diagnosed with a glioblastoma, and had surgery to remove the tumor and part of her left frontal lobe. This week, I took her for her most recent checkup – a two-day process that involves labs, an MRI, and a meeting with her multidisciplinary team at the Mayo Clinic. Before that, I brought her to Tallahassee to show her the house and talk to her about Where We Go From Here.

She did much better than I expected at my house. But “better than expected” doesn’t mean much when I had set my expectations at ground level. She was able to get around, slowly, and even made it upstairs in the big house to see the bedrooms. We talked about moving her over to Tallahassee at the end of the year, and hiring in-home caregivers to help her establish and maintain a routine. Her current typical day involves eating three meals and watching three movies (read: probably taking three naps) at the facility’s theater. As a result, her physical abilities have diminished and she has lost interest in things she used to love. She hasn’t even watched a Jaguars game this year. A Jaguars game, people.

Adjusting to mom’s new normal has been harder for me than for her. I remember her before she was sick. She doesn’t have any visible scars – no amputated limb, no braces or wheelchair – to remind me that she is irrevocably different now. At 17 months out from surgery, she has probably made most of the cognitive recovery she is going to make, and where we are now is…. well, it is what it is.

It’s like this:

She asks me constantly, like a toddler, what time things will occur. “When is my MRI?” “When do we need to leave?” “When do you want to eat?” It’s almost funny, except she has no concept of time or schedule. If I tell her we need to leave at 6:15, there is a zero percent chance she will be ready at 6:15. She kind of drifts through time like a manatee, and cannot fathom why other people find it aggravating.

When you or I are interrupted, we devote a portion of our mind to the interruption. Let’s say I’m cooking and Hazel asks for a snack. I wait for a break in the recipe process, get her a snack, and get back to work. When my mom is interrupted, it’s like a record skips and time starts over. For example, Saturday night we were at dinner, discussing plans for Sunday. I told mom that we’d come have breakfast with her and then I’d drive her to church.

Less than five minutes later, her phone rang.

Interruption. Record skipped. Time reset.

I heard her say, “Sure, I’ll meet you in the lobby at 10:30 tomorrow morning. See you then.”

I waited for her to hang up, then asked who had called. “It was my friend. She offered to take me to church tomorrow. Isn’t that nice?” When I pointed out that we had just talked about this, she seemed baffled. The interruption – the sound of a ringing phone – created a clean break in her mind. This makes it difficult for her to go out, because the world is filled with interruptions, creating fragments of time that overwhelm her.

She also tends to get ideas stuck in her head, and once lodged there, they are impossible to remove. When the doctors arrived for our meeting on Thursday morning, her first question was, “Has the bleeding in my brain stopped?”

Let’s be clear. She does not now, nor has she ever had, bleeding in her brain. But somewhere along the line, she got it in her head that the reason she was having bi-monthly MRIs was to track the progress of a brain bleed. Her doctors told her that she never had a brain bleed. I told her she never had a brain bleed.

In the car on the way home, her pastor called her. She told him the bleed in her brain had stopped.

Several weeks ago, she got a bad cold. I asked if she was taking anything for it.

“I can’t take cold medicine,” she informed me.

“Who says you can’t take cold medicine?”

“My doctor.”

“Which doctor?”

“All of them.”

“When did they tell you that?”

“They tell me all the time.”

This is simply not true. She’s had someone with her for almost every doctor’s appointment over the last year, and no doctor has ever said anything like that. But she’s got it in her head that she can’t take cold medicine, and so she suffers through colds.

Most of her convictions are relatively harmless, but the one area where we continue to struggle is her car. She demanded to have it at her assisted living facility, and she drives it several times a week.

Her neuro-oncologist told her six months ago not to drive unless it was an absolute emergency – like if the building was on fire.

She continued driving – to the grocery store, choir practice, the bank.

Her new neurologist and oncologist told her Thursday morning that she was not to drive under any circumstances, ever. Period.

Guess who drove herself to choir practice after dark on Thursday night?

Ding ding ding!

Sigh. It appears I am now tasked with prying the car keys from her fingers. I remember mom having to do the same thing with her own mother, and how much tension it caused between them. I hate to be the bad guy. I feel like so much has already been taken from her, mostly by circumstances beyond anyone’s control. She had to leave her home of 30 years. She gave up a lot of her volunteer work. Her once-packed social life has withered to almost nothing. Her car is one of the last vestiges of her old life, and she clings to it.

This is understandable.

It doesn’t change the fact that she shouldn’t be driving.

It’s a good thing I get so much practice enduring tantrums. Time to dust off my Mom voice.

Sigh.

 

 

 

 

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