Well, This is Alarming
November 9, 2017, my son was diagnosed with strep throat and I breathed a sigh of relief. Since finding my mother, dazed and confused, I’d been trying to talk her into going to the doctor, and she had kept refusing. Having had Thor coughing in her face for days, I finally had an excuse to drag her to the urgent care. She was not happy about it, but she agreed that if Thor had strep, he had probably given it to her.
The strep test came back negative, but after three different people (an RN, a PA, and an MD) had used two different blood pressure machines and one old-school hand-pump cuff to get a read from my mother’s arm, we won a trip to the emergency room. We could have taken an ambulance if we’d wanted–that’s how high Mom’s blood pressure was. She refused.
Eight hours later, we were released from the ER with an armful of prescriptions and a referral to a GP for follow-up.
Those were the numbers I wrote down in my little notebook. I was carrying it with me by that point because whenever I thought of something I needed to do for my mother, I would write it down so I wouldn’t forget.
Those were the readings for my mother’s blood pressure and blood sugar when we got to the emergency room. They let us leave when they got her down to 130/82 and 236.
“I don’t know what these numbers mean,” I told the attending physician in the ER.
“They mean your mother is at high risk of stroke or death.”
“I’m not having a stroke!” My mother insisted, then started muttering about being healed in the name of Jesus.
The physician didn’t quite ignore her, but clearly, I was the one to talk to. I got a long lecture on diabetes and heart disease, but not nearly long enough because at that point in my life all I knew about either was that you shouldn’t have sugar with one, salt with the other, and both would kill you.
However, it was the first in a long line of doctors talking to me like I was an abusive pet owner, who had willfully ignored the health of my mother. I’d only gotten hold of her a few weeks prior! I’d barely gotten her to the urgent care! I knew she needed medical intervention, but you try moving a 285 lb woman anywhere she doesn’t want to go.
I ignored the tone and just wrote notes in my book. I figured I’d need that for the follow-up with the office doctor.
My mom home and tucked in bed, I went home and started scouring the internet. I’m honestly surprised she hadn’t stroked out or died. The internet was pretty sure it was impossible for her to be alive, much less mobile and communicative. So, I filled her prescriptions, bought her a day/night pill container and got to work getting her healthy.
The first step was a visit with the office doctor who expressed some surprise at the fact she had survived the ordeal. Thank goodness for strep, right? Another 24 hours at those levels and she probably would have died, he said.
I pulled out my little book and read him what I’d written, confirming the numbers I’d taken from urgent care to the ER, and the numbers the ER had sent us home with. I showed photos of the pill bottles to confirm medication and dosages, and dutifully wrote down everything he said.
When he asked me why my mother had not been on medication previously, I looked to her. She pretended not to see me. She studied the wall, her chin jutting out stubbornly. “She doesn’t like medication,” I told him. “I know she’s had prescriptions for her heart, but she didn’t want to take them. She takes…herbs.”
He hummed and made a notation. “How long has she had diabetes?”
“Erm… Mom? Didn’t Dr. Chang make that diagnosis?”
“He said I had it, but I don’t.”
I thought of all the banana splits and 2 liters she had consumed in defiance of Dr. Chang’s declaration. She took licorice root, she said, and that was enough to balance her sugars. I felt my own blood pressure starting to rise.
I said to the doctor, “At least ten years. I think that’s the last time she’s had a regular doctor. He said she had diabetes, so she quit going to see him.”
“I don’t have it,” my mother said, sullenly.
“Well, Mrs. M,” the doctor said, “you actually do. That’s probably what has led to a lot of your confusion. When your blood sugar is that high, and when your blood pressure is that high, it affects blood flow to your brain and makes it hard for you to think.”
Her attitude turned on a dime. “Oh!” She gasped. “I didn’t know that!”
“Yes, you did you old fart,” I thought angrily. “You’ve told people that yourself!”
We left there with another prescription and referrals to three specialists.
“He doesn’t know what he’s talking about,” my mother huffed as I fastened her seatbelt. “We need to go to the Vitamin store.”
Over the course of the next couple of weeks it became clear that my mom couldn’t remember how to take medicine on a schedule. There was not enough Gingko Biloba in the world. I had already put alarms in her phone to tell her when to go to breakfast, lunch, and dinner, and I was afraid more alarms would confuse her.
After several failed trials, this is what I came up with that worked:
First, on the advice of my cousin, I bought my mom an Alzheimer’s Clock.
This clock would show her the Day of the Week, the Date, the Time, and the Time of Day.
Next, I bought her a pill case that alarmed and chirped at her.
She was sure she could remember her morning medicine, so I put her nighttime pills in the case and set the alarm to go off at 8PM. I put the pill case in front of the clock. She would be able to look at the clock, see the Day, match it to the day on the pill case and medicate herself.
For her morning medicine, I took ziploc baggies and taped them at eye level to the cabinets above her kitchenette. I wrote on each bag: Day of the Week: MONDAY, Time of Day: MORNING. And, this worked really well until it didn’t–so, for about a year once she got into the habit.
For us, the biggest problem was that my mom just hates taking medicine. She doesn’t believe in it. We struggled for a long time until I lost my temper and asked her if she wanted to see my son graduate from high school. She said she did. I asked her if she still wanted him to come and visit her after school (she lived across the street from his middle school and he could walk over.) She said she did.
I told her if she didn’t take her medicine, she would die before he made it to high school, and if she didn’t take her medicine, I wasn’t letting him come over alone because I didn’t want him to be the one to find her cold, dead body. Whatever Vascular Dementia had already done to her brain, those words made it through the squeezed out blood vessels and she heard me.
And, until she just wasn’t able to manage it for herself anymore, she took her medicine. Getting her to the appropriate doctor visits, though, that was another story.
Ducks, Depression, and Just Doing It
As I’ve said, I pretty much hijacked my mother’s life in 2017. Between the last of September and mid-October, with her active permission, I took over her finances, took over getting her moved into Independent Living, took over her healthcare, and started working on getting her house ready to sell.
It was a huge undertaking and I wasn’t sure where to start, or how I was going to get it all done. I guess my first lesson in caretaking was that prioritization is key. You have to have your ducks in a row, or you’ll lose your mind. My ducks look like the North Korean parade army.
My mother has suffered from untreated depression with manic swings for as long as I can remember. My mother’s house, when I moved her out of it, hadn’t been cleaned in three years. Prior to her heart surgery, I’m not sure how long it had been. While my mom was in the hospital, I cleaned out her house.
The more I cleaned, the angrier I got. I was mad at her and mad at myself. I should have been a better daughter, I thought, and I should have made sure her house was clean.
But, ask anyone in my family. We were not known for being neatniks.
I suffer from anxiety and depression. I also suffered from a syndrome that I don’t know as having a name. It goes like this: My mom liked shopping. My mom treated her depression and anxiety by shopping. She felt guilty shopping for herself, so she shopped for me. My mother was extremely depressed and anxious, so we went out nearly every night and shopped.
We shopped so much that I had two bedrooms full of things. I could not fit all the things in my dressers and closets. My closets and dressers were stuffed to bursting, and I had clothes and things dripping from every flat space, and in mountainous piles on the floor. I honest-to-god had nowhere to put things. I could not put things away because I had no space.
And I was sad and anxious, and afraid. Fear was a huge part of my childhood and young adulthood. If my room was a mess, I figured if someone broke in*, they would hurt themselves trying to get to me. My mental health issues were exacerbated by the inability to clear space, and I was being literally buried by the physical manifestations of my mother’s issues.
I figured this out when my son was born, and she and I both started doing the same thing to him. Then, I started the gut-wrenching process of cleaning up my act, which started with addressing my mental health. I was a mess, y’all. But I only had about 37 years of mess to clean up at that point. My mom had 65 and also cancer, so… One thing at a time.
Anyway, as I was cleaning her house, I was furious that she hadn’t ever addressed the mess. I was also so sad for her, and so ashamed that I had failed her as a daughter, but also frustrated by my own helplessness, and worried about her dying in the hospital–it was a lot.
When she came out of the hospital, I offered to hire someone to help her keep things clean and she refused. She wanted me to come clean it for her. I laughed at that. I was barely keeping up with my own cleaning. I hired Molly Maids to do the heavy lifting for me. I wanted to do the same for her.
But, mental health issues are dastards, and by the time I moved her out of her home three years later, it was piled just as high with unopened boxes from Home Shopping Network, clothes, shoes, Coke bottles and water bottles, and three-years worth of unopened mail.
On my first trip over to start the process of clearing the house to clean it to sell, I just stood in the entryway and cried. It was overwhelming.
Then, I told myself to pull it together and just pick a place to start. Just do it. Eat the elephant one bite at a time.
I chose the mail and here’s what I did:
- I cleared a little space in the floor.
- I gathered armfuls of mail until I had filled the space in the floor.
- I sat down beside the mail.
- I started making smaller piles.
- Official Business
- Once the piles were sorted, I got up and put all the junk and notices in a trash bag and took that to the curb.
- I sat back down and took the bills, sorting those out by type and if it was recurring
- Credit card
- From there, I found the most recent of each individual type of bill.
- I took two of each bill and photographed every page with my phone, capturing:
- Account Number
- Pay To address
- Statement of charges
- Website pay information
- I also wrote this information down in a little notebook.
- Then, I bagged up all the bills in a trash bag. I know I should have shredded them. I did not. I threw them away. Don’t @ me. I don’t care.
- I took pictures of insurance account information, then threw those things away.
- I wrote all insurance account information down in my notebook
- I skimmed through the postal dates on everything else. If it was more than 3 months old, it went in the trash. If it was newer, I looked at it.
- Then, I threw everything else away.
After I got home, I needed to decide how to address payments for the bills I’d found.
- I opened a credit card with the bank my mom used (I have always been a joint signer on her accounts)
- I started online accounts for every bill that allowed me to do it.
- For every account I could, I set up an auto-pay to the credit card
- For the ones I could not, I set up an auto-pay from Mom’s bank to the bill
- For the ones with different balances, I set myself phone alarm reminders to pay
- As I paid, I put a checkmark in my notebook.
It took me about four hours to get through the physical mail and another two hours to get everything set up to pay.
Then, I went online to the post office and had her mail forwarded to me.
By the end of the first week in November, my mom’s finances were under control, and I was making a tiny amount of headway in her house. And that was great because by the end of that week, we were in the emergency room and my mother’s blood pressure and blood sugar were both so high, they were afraid she was going to stroke out before they could get them down.
I had a new goal: Get Mom healthy. The house could wait.
*I was home-invaded when I was 19, so me being afraid of someone breaking into my house is not an irrational fear.
We Don’t Hit
Dementia surprises me on the regular. I meet aspects of my mother’s personality that were previously hidden to me. We have conversations I don’t think we ever could have had before, but now, I’m having those conversations with someone who cannot understand what they do or mean to me.
The week we moved my mom into memory care, she had a really hard time. After helping her with a shower that she did not want, I started helping comb out her hair. She’s tender-headed and I was being as gentle and slow as I could be.
She just fussed and snarled, and complained. I flashed back to the number of times she had left knots on my head, cracking me hard with the backside of a plastic Goody hairbrush for complaining, or moving, or–God forbid–crying while she teased my hair into a bouffant style. For a second, I hesitated and considered whacking her with the flat side of the comb. Her scalp looked so pink, though. That would really hurt.
I told myself I didn’t want to hurt her, but an ugly little part of me reared its head and said I did. I pushed that part of me down and satisfied myself by threatening it instead. “Hey, now. Do you want me to do what you used to do to me and whack you on the head every time you fuss?”
My mother scoffed and pouted. “I didn’t do that to you! Your mother did.”
I was still in the memory of sitting on my knees on the toilet lid, trying to cover my head and getting my knuckles cracked for my trouble. I laughed, “Yes. My mother did.”
Mom sighed then, and shook her head, making it harder to comb. I urged her to be still and she said, “I used to tell her, “Don’t you hit that little girl!” But she never listened to me. She never listened to me. She just hit that little girl again and again. All the time.
“I tried to protect that little girl from her mother, but I couldn’t. Please tell that girl. I’m sorry. I really tried.”
I was frozen, not sure what to do, but she was so plaintive and sincere, and I realized I was getting an apology. Sure, it was from a disassociated personality, but at least somebody in there realized I needed one, deserved one.
Patting her shoulder, I went back to combing. “I will. I will tell her.”
She went back to fussing that I was pulling too hard.
It is true that my mother used to hit me.
“Don’t you mean she spanked you?”
When I worked up enough nerve to tell someone, that’s what they asked me. More than once. It was a rhetorical question. “Your mother loves you more than anything in the world. She would never hurt you. I’m sure you just mean she gave you a spanking.”
I quit telling anyone. No one wanted to hear it.
It is also true that my mother loved me more than anything in the world.
So, it’s weird. My mom doted on me, lived for me, adored me, and also beat the shit out of me on a regular basis. She did call it spanking, and she explained that I just had very fair skin and that’s why I ended up with bruises and weals. It wasn’t how hard she was hitting me, or with what. It was just that I was pale. It was normal. And face slapping and backhanding, well…I was sassy. If I learned to watch my mouth…
She had this thing she did where she would do the “spanking” part, then she would make me sit in her lap and she would cuddle me and tell me how much she loved me. It became a ritual. Family remarked on it. “Look how much that little girl loves her mother.”
When I was three, we lived in Colorado.
My mom tells this story and she laughs. I used to laugh with her because I thought I had to.
I wandered away from her in the fabric store in Cinderella City Mall. I remember being lost, but I knew the way to the store owned by one of our neighbors. I asked someone to take me to that store, and that’s where she found me. Along the way, I lost my little blue sweater. It had a hood. A part of me still keens for that sweater–I really loved that sweater. I know where I left it. It was on the back of a chair.
I don’t remember the part between my mom finding me, and my mom taking me into the restroom. I do remember how afraid I was when I realized she was angry. She carried a wooden spoon in her bag, just in case. I do remember trying to get under the sinks in the restroom. Surreally, I remember the way the acoustics amplified my voice when I screamed. And, I remember two ladies rushing in and trying to stop her.
I remember her posture and the way her back looked when she got between those ladies and me, and I remember her threatening to flush one of them down the toilet if she didn’t mind her own business.
I also remember worrying and crying more, and saying, “I’m okay! Leave her alone!”
The ladies left and my mother resumed, and finished “spanking” me.
My mom loved this story because she thought it was so funny that the other ladies ran away, and she loved that I had defended her against them.
I was three.
I was three, but I knew the anger really well. I was used to having my face slapped. I was used to being taken by the shoulders and shaken until my teeth rattled. I was used to being slung around and just generally hurt. And I was used to being cuddled and petted, and adored after the hurting stopped.
I was sitting in the activity room with my mom and she was telling me about how terribly everyone in the facility treated her. “No one likes me. And they are all mean to me. They push me and they pull me, and they won’t let me go where I want to go.”
One of the first things I learned was that you can’t reason with Dementia, so I just let her talk and didn’t try to explain. She went on, her credibility dipping as she told me that my aunt had called her that morning to ask her to come fix her car, and how she had driven all the way to Alaska to do so. My aunt lives in San Antonio. She left Alaska when I was a toddler. Also, I know they haven’t spoken in quite a while.
“I’m telling you, Lane, I am telling you. I’m going to hurt someone here.” She veered swiftly away from a three-level parking garage in Juneau and back to the memory care–which she believes is a prison. “I’m just starting to realize how much…anger…I have inside of me.”
“Just now?” I laughed.
It was like that time she told me she was mellow and easygoing and I nearly ran the car off the road laughing because those are the last two words anyone who’s known my mother for more than five minutes would choose to describe her. Mellow. I’m laughing right now.
Suddenly, she was right there in the moment with me. For a second, her eyes cleared and she tilted her head and regarded me shrewdly. I picked my chin up from where it rested in my hand, and looked back at her.
Slowly, seriously, lucidly she said, “I have used that anger to hurt you. I have really hurt you with that anger, haven’t I?”
“You did the best you could,” I answered. I didn’t want to upset her, but I couldn’t deny it either.
“Oh, Sweetie. I am so sorry. I am so sorry. There is so much I would change.”
“I know.” I took her hand. “You did the best you could–and look! I turned out okay.”
“You turned out more than okay. Oh, Girl, you are my heart. You are my world.”
“And these people here are so jealous of you,” she snorted, and she was gone. Dementia regained possession of her and she shared her belief that her nurses were trying to drive a wedge between us because they were jealous of our relationship and wanted her to themselves.
I put my chin back in my hand and let Dementia rattle on until she tired herself out.
My son was around two the first and only time I slapped him. He was in the backseat of the car and he had been screaming non-stop in a tantrum for 45 minutes in traffic. I lost my temper, reached back and struck him in the face with my open palm. As soon as I’d done it, I wanted to die. I wanted to pull the car over, gather him up out of that car seat and hold him and love him, and beg him to forgive me. I can still see his eyes in the rearview mirror. He was so betrayed. I vowed I would never do that again. I’m still sick over it.
My son was about three the first and only time I ever spanked him. I gave him five swats on the butt–mostly hand to diaper through his tiny shorts. I’ve never done it again. He was so small, and I was so big. I made a decision to never lay a hand on him again.
Have I wanted to hit him since then? YES. Yes. That time he purposefully headbutted me in the face so hard I saw stars? He was three then. I was holding him and he was pissed off. But he was so small, and I was so big.
I handed him to his father and walked away.
He has smarted off at me as a tween in such a way that I have wanted to haul off and backhand him into next week, but we don’t hit. We don’t hit.
The last time my mother hit me, I was fifteen. We were standing in the kitchen. We were disagreeing. She said something. I said, “Duh,” and rolled my eyes. Next thing I knew, there was blood in my mouth and my glasses were on the floor.
My mother was abused as a child. She told me about it regularly. She gave me great detail about the whens, the hows, the whos of her abuse, and she told me how lucky I was that she only hurt me a little bit, when I deserved it. She told me how lucky I was that she never loaned me to other people to abuse. This, as she rocked me, stroking my head after she’d hurt me.
By the time I was three, I knew how badly my mother had been abused, and that I was lucky she loved me so much and only beat me a little bit.
I was lucky. She could have done me a lot worse. And, at least by over-sharing all that information, when I grew up and faced down the demons that were haunting me, I could understand why she wasn’t able to win against the demons she’d been fighting.
She did the best she could.
I’m doing the best I can.
My son will do even better.
The best I can includes sometimes staying away.
In the past couple of years, my mother’s increasing helplessness and attending neediness, clinginess, and anxious drowning-man grip have threatened my grasp on kindness and keeping of gentle hands.
Do unto others as you would have others do unto you. Man–I feel that as an adult who is trying to give patient care to a parent whose patience was best described as thin. I have had every opportunity to do unto my mother as she did unto me.
So far, I have not given into the temptation, but I have to work against it. Old bitterness, and a Greek chorus of ghosts from my memories shove me toward cruelty like boys pushing their friend toward a fight. “Do it! Say it! She deserves it! Get her!”
I have forgiven, but forgetfulness is a challenge. I remember. I can’t help but remember, and then I want to avenge myself. For a very real moment, I want to fight for the child who could not fend for herself.
But then I look at her. She’s so small now, and I’m so big. She is so weak and frail, and I am so strong. I could break her. It would be easy to break her.
But, we don’t hit. We don’t hit with hands, and we don’t hit with words.
So, I hand her over to professionally trained caregivers and I walk away.
My grandfather didn’t have a father, and from all accounts, his mother did not care for him very well. He was the love of my life until he passed that torch to my husband, and Thor came along. I’ve often wondered what he could have been if he’d had a loving family.
When I had Thor, the goal I set for myself as a parent was to be the kind of mother to him that I thought my grandfather had deserved. I figured the best way to honor my grandfather was to treat my child the way I wish he had been treated. I wanted my son to have the chances my grandfather didn’t have.
I wanted to parent into the past to make a better future.
My mom was grossly abused. Grossly. Shamefully abused. I have often wondered what she could have been if someone had protected and cherished her.
When I took over care for my mom, the goal I set for myself was to be the kind of mother I wish she’d had. Because, if she’d had that mother, my mother might have been able to resist those demons that always got the better of her.
I am parenting the moment to heal the past–hers and mine.
(My mom did the best she could. And this isn’t the whole story of who my mom was. A big part of that story was told on the stage of Listen to Your Mother Austin, when I shared how my mother’s love shaped some of the best parts of me. Watch the video at the link above, or read the story on Scary Mommy here. My mom had issues because of untreated trauma, but she tried really, fucking hard to do better than had been done to her. And I always knew that I was loved. She’s not a monster or a saint, just a human mom who sometimes failed, and sometimes knocked it out of the park with parenting.
If you know a child who is being abused, this is a great resource.
If you are abusing your child, or if you are afraid you might abuse your child, this is a great resource. Call 1-800-4-A-CHILD (1-800-422-4453) then push 1 to Talk to a Hotline Counselor for help.)
The Call Is Coming From Inside
Hindsight is 20/20.
Looking back, my Mom was exhibiting behaviors symptomatic of dementia as many as five years before the day I found her wandering around her house in a state of pantsless confusion, and hijacked her out of the 3-bedroom house of my childhood and into an independent senior living community.
My mom has always been a little…weird. Her behaviors have never followed any kind of norm, or been at all regimented. Her moods have always swung wildly between delight and despair. She has always been unusually paranoid. She has always been abnormally unpredictable, careless and scatter-brained, and sometimes frighteningly in denial of reality. It was all part of her charm if you weren’t living with it.
So, the night she called me from a stranger’s phone because she had lost hers and then gotten lost in Dallas, I just chalked it up to my mom being her kooky, forgetful self. If she hadn’t had my son with her, I wouldn’t have given it another thought.
The stranger gave her directions to get home, and I met her at her house to pick up my son and take her a burner phone to use until we could retrieve or replace hers. She was as distressed as I’ve ever seen her.
Before we did anything else, I started dialing her phone to see if maybe it was just under or between a seat. We could hear it, which was great. But we couldn’t see it. Finally, when Mom and I leaned into the same space, I realized it was coming from her. The call was coming from inside. Inside her blouse. It was in her bra.
We laughed, sort of. She was embarrassed and angry. I was worried and angry. And, we were both in denial that something was really wrong.
I told myself that maybe her chest area was still numb from the heart surgery she’d had the year before. Maybe that’s why she couldn’t feel the vibration that accompanied the sound? I mean, she’d always gotten lost while driving. Half of my childhood was my mother being lost and us having to stop and ask directions.
It was easy to ignore the problem because I didn’t want to see it. The problem inconvenienced my life. It meant I had to have hard conversations with my mom about moving out of her house. It meant hard conversations were coming about whether her driving days were over. It meant confrontation about how she couldn’t take my son out anymore, and inconvenience to me because she was my best babysitter. It meant hurting her feelings and insulting her sense of dignity. And, it meant confronting my own mortality.
The writing was on the wall, though, and I started trolling the internet for information about how to ease cranky seniors out of their homes into Homes. I narrowed my search from Everywhere down to 3 potential places.
Then, in September of 2017, after she hadn’t answered her phone in a few days, I went to her house to find her wandering through her hoarder’s nest dressed in only a t-shirt. She was confused about what day of the week it was and why I was there, and I couldn’t be sure the last time she’d eaten.
I took her to IHOP and fed her, which seemed to help clear up her head, then took her to my house, where she stayed until I moved her into the Independent Living community a mile away.
Since her official move-in date of October 31, 2017 and her official diagnosis of Vascular Dementia on November 13, 2017, I’ve learned a lot about Elder Care, Independent versus Assisted Living, and Memory Care versus nursing homes. I’ve learned the differences between hospitalized rehab and skilled nursing rehab, geriatric psychiatric units versus geriatric behavior units, versus geriatric care. I’ve learned about Powers of Attorney and Medical Directives. I’ve sold my mom’s house and researched the best way to save her money. I’ve also freaked out a lot about her money.
I’ve dealt with doctor’s appointments, and insurance, and the Department of the Navy, and the IRS. We’ve been through multiple stays in the hospital, a stroke, surgery, and recovery. I’ve managed her friends and family, a full-time job, and a teenager, and perimenopause.
I’ve learned tricks to manage medication and mental illness, while trying to take care of my own physical and mental health. I’ve learned to do what is necessary and let the rest go. I learned to let the internet carry my load, and let my friends carry me.
I’m kind of tired of learning right now.