Adventures with Mom

In October, we placed my mom in a group home (Wadesboro Place) that we really liked.  It had the right combination of clean, affordable, and the promise of a supervised environment which was definitely needed. The owner/director said they took trips to the library every week and had lots of activities.  We were happy with it up until the last month or so.  Since just before Christmas, the owner has been increasingly distracted and unpleasant.

That unpleasantness reached crisis point this last week. It went something like this:

*phone call at work.*

K: Hey, I just got off the phone with Debi (owner of Wadesboro). She said Mom keeps walking around with out a shirt on.

Me: Ummm…okay.

K: She said one of us needs to go out there.

Me: Why didn’t you just have her put Mom on the phone and talk to her?  That should be all it takes to redirect her.

K: Um… I didn’t think of that.  I’m at the dentist with [my son].

Me: *sigh* Okay.  I’l call Debi.

*call Wadesboro*

D: Evie!  I can’t get your mom to listen.  She keeps coming out in her bra and every time I send her to put a shirt on she comes back with just her bra and sweater again.  I am going to call the ambulance if you can’t come get her.

Me: Wait… call the ambulance?  For what?  She’s not naked.  She’s wearing a sports bra.

D: I can’t have her walking around like that.  I’ve got things to do and I can’t watch her all the time.  You’ve got to do something with her or I’m calling the ambulance.  I’ve got places to be and I can’t deal with her.

Me: She’s wearing a sports bra.  It’s not exactly revealing.  Did you give her a shirt and ask her to put it on?

D: Yes.  Twice.  But I don’t have time to keep telling her, and she keeps just putting on her bra and sweater. I’m calling the ambulance if you’re not coming out here.

Me: What do you expect the ambulance to do?  She’s not naked or sick.  Just put her on the phone and let me talk to her.

Mom: Evie!!

Me: Hey, Mom.  You okay?

Mom: I… maybe?

Me: It sounds like you’re having a strange morning.  Debi tells me you’re walking around in your bra.  That’s not covered enough in the cold.  You need a shirt on.

Mom: I have a shirt.

Me: Okay.  That’s good.  You’ve gotta keep that on, okay?  I’m coming out tonight for bath night, and I’ll see you then.  Okay?

Mom: Okay!  I love you.

Me: Love you, too.  Give Debi the phone please.

D: Are you coming to get her?

Me: No.  I’m at work.  She says she’s wearing a shirt now.  Is she?

D: Yes, but I can’t have her disturbing everyone anymore.  If you’re not coming I’ll have to call the ambulance.

Me: That makes no sense.  She’s wearing a shirt.  She’s not sick or hurt; she just got her wires crossed this morning. I can’t leave work and run out there every time she has a weird moment.  I’ll be out there tonight for a bath and to check on her.  She seems confused but fine.

*30 minutes later; phone call at work*

K: Hey, Evie, I just got off the phone with the sheriff.  He said he can’t Baker Act mom.  She’s calm, complacent, dressed, and not hurting herself or anyone.

Me: Well, duh. Of course he can’t.  Wait, why were you talking to the sheriff?

K: Evidently Debi called him.

Me: What?!?!  Over Mom in her sports bra??

K: Her sports bra?  Debi said she was topless.

Me: Yeah.  Shirtless, but in a sports bra.  She physically can’t pull her bra off without help.  Did you think she was naked?

K: That’s what I thought Debi said.

Me: Ah.  NO.  And by the time I talked to her she was wearing a shirt, too.

K: Then I don’t know what the problem is.  She’s always walked around the house in her sports bra.

Me: I know! Debi has issues.

K: Well, if that’s all it is, then I’m not going out there either.  I told Debi to call me if anything else went wrong.  I’ll call you if anything happens.

Me: Sounds good.  Thanks, bro.

*at lunch*

D: (via text) The EMT’s just left.  Until your mom can be placed in a nursing home, you will need to hire a sitter or have a family member take her. She can’t stay here otherwise.

K: (via text) I’m at the neurologist with Mom.  Debi tried to Baker Act her, but the EMT’s and the sheriff wouldn’t take her. I don’t think she needs to go back there.

Me: WTF!!! On my way. And hell no she’s not going back there.  Debi won’t take her back anyway.

By the end of Wednesday we’d had her seen in the neurologists office, by two social workers, and by a psychiatrist, as well as the initial sheriff and the EMT’s. The nurses, social workers, and doctors all said she was a-okay and Baker Acting wasn’t appropriate.  She is not dangerous.  Not self-harming.  Not sick.  She’s just suffering from dementia and often gets her wires crossed.  Both social workers also suggested that her caregiver wasn’t a safe choice anymore, to which we heartily agreed.

So, now, she’s living with me.  We’ve got her on a waiting list for a nursing home.  We’re starting the application for Medicaid.  We’ve got a case worker from Elder Affairs coming.  She’ll be starting elder daycare soon.  Until then, because I have the most amazing friends in the world, she’s safely spending her days with one of the sweetest girls I know.  She’s eating well, sleeping deeply most of the night, and laughing at everything that strikes her fancy.  She sits quietly for hours reading children’s books and stacking and unstacking Duplo Legos.

Mornings are a challenge.  The first morning was a heartbreaking reminder of what this disease is doing to her brain and body. She was deeply asleep when I called her, and even though she got up and went into the bathroom to brush her teeth, her brain wasn’t yet functioning.  I’ve seen “the jumps” before, but never quite as bad. They’re something between a petite mal seziure and tourettes. This time the toothbrush went flying, the soap rolled into the sink, she leaned forward and grunted, and she almost fell when I tried to get her to sit down.  It took almost an hour for the jumpy arms and legs to calm down and her eyes to start to focus.  The neurologist said it’s a common sign of braid decay progressing, and it breaks my heart.

This is not the adventure I would have asked for, but it’s the one I’ve got.  And I’m growing.  I’ve never been good with patience and compassion.  It’s not how I’m hardwired, but I have a feeling this adventure is going to force me to try.  As hard as it is, as much as I may have to miss out on until we find her a safe, loving, nursing environment, every bit of it will be worth it to know she’s secure and happy.

WORDS

Oh, to get lost in words

Hours spent immersed, surrounded

By the music of the neighborhood,

Yet deaf and blinded

As words flow through me,

Around me, and in me.

Words grow

Like breathing,

The inhale of reading,

Writing an exhale.

Words are a solace,

A calming of my mind,

A stilling of my soul’s race.

Words fade

As the sun slips into the west,

And, like a diver, I surface

Once more into the world,

My essence a tranquility.

Clean, renewed, I am

Once more, me.

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Out-of-Character Political Rant *warning*

Out-of-Character Political Rant *warning*

You know, you constantly hear all kinds of hubub in the media and on-line about this topic or that topic, and it’s usually so politically charged and biased that you can’t figure out if its totally true, entirely false, or just spin loosely based in truth. I usually err on the side of assuming its all codswallop and ignore 90% of it. Today, though, unless the document linked here is the most complicated of hoaxes (seriously, it’s linked directly from the supreme court web site), today’s uproar is actually true, and I have to admit to taking it very personally. READ it (pg 5-6 carry the verdict of the day), then get pissed.

The US supreme court has ruled 5 to 4 that corporations like Hobby Lobby don’t have to provide contraceptive healthcare coverage if it violates their “free exercise of religion”. Because of the way the Healthcare Act appears to be written, ALL forms of birth control- including drugs like RU-486 that terminate an early-stage pregnancy- are to be covered for free and it’s the free coverage of that which Hobby Lobby (where I will never shop again) has protested. The result of the decision appears to be that they don’t have to cover contraceptives at all, rather than that they must write special healthcare plans that do not include the pregnancy-terminating drugs in question (which I actually wouldn’t object to).

No one in mainstream American culture has seriously claimed birth control was morally wrong since 1965. Women here are educated, smart, and capable, and mainstream culture likes it that way, but “people” like this corporation seem to be waging a war against smart, capable, educated, autonomous women who choose not to procreate until they’re ready. Letting women make their own choices and live with them appears to violate some other asshole’s religious freedom, and we can’t have *that*. So they’re trying to stop us from preventing unwanted pregnancies. They certainly don’t want us to terminate them, but sweet baby Jesus knows they’re not going to pay for medicine, food, and college tuition for our 8 kids once they’re here, either. Thanks, bigoted, woman-hating, religious extremists for hammering down one more nail in the coffin-lid of my dying Christianity. May your smart, capable mothers be long-dead so they never had to see what a worthless piece of paleolithic-minded toilet floater you’ve turned out to be.  

And the same goes for you, Supreme Court of the United States, for not telling them to get stuffed over this.    

Evidence

Kevin's card

Just 5 short years ago, my mama graduated Summa Cum Laude from university, and no daughter has ever been more proud. She did it on her own, and did it well.  Last week, she sent this note to one of my brothers. There can be no clearer evidence of just how much this disease is stealing who she is and how she functions.  This is the woman who read to me as a child, not children’s books, but Tolkien, Lewis, Asimov, Herbert, and more.  Who taught me to read before I even made it to pre-school.  Who instilled in me a love of language and the natural world.  Today, she often writes, reads, and speaks like a child or someone struggling to learn English.

Its so incredibly hard to explain to others the depth of what’s going on, and in some ways even harder to wrap my own head around it.  You spend your whole life seeing your parents one way- the way you did growing up.  I don’t think you ever really expect them to stop being self-sufficient or more full of life-experience and wisdom than you are.  You always expect them to be the ones you go to when you need advice.  Watching my mom so rapidly change into someone who needs our frequent guidance, who writes, speaks, and even behaves so much more child-like, is deeply saddening.

There’s an incredible bi-polar pull on my heartstrings.  One half of me carries a fiercely protective instinct toward her, just as I would with a child.  The other half of me both resents that I need to take care of things for her and fears that she hates it, too.  I would; in her shoes I’d be so, so very angry.  And I know her- she’s always been so independent that the idea of being watched over and policed all the time should be maddening.  It doesn’t seem to be, though.  So far, she’s been… passive, distressingly so.  That loss of confident autonomy is just as sad as her loss of language.

I suppose the plus side is that, so far, she seems not unhappy.  With any grace, as this disease steals her cognition of language, it will also steal her awareness of what she is losing.  While that doesn’t make it easier for those who love her, knowing she’s not suffering the same heartbreak would be a relief.

When Self-Awareness Kicks you in the Pants

Sometimes realizations come along and simply cut you off at the knees, leaving you thinking, “Oh!  OH!  So that’s what!”

I had one of those days last week, as I was struck with this internal truth bomb: DENIAL & AVOIDANCE.

I like to pride myself in being direct and driven.  I see a problem, assess the pieces, consider options, and then act without looking back.  I am decisive and motivated once I’ve chosen a path.

Lately, though… not so much.

I’ve been avoiding talking seriously to people who matter.  I’ve been procrastinating about certain business-management tasks. I’ve ignored this blog.  I’ve immersed myself in all the “busyness” I could find. I’ve been futilely angry at the Universe.   All because it was easier and safer than accepting what is and letting it be real.

I’ve been desperately, if unconsciously, waiting to wake up and discover that the nightmare is over and life is back to normal.  But that’s not going to happen, and I finally awoke to the reality of my own denial.

I came home from Mexico to visit in July.  I stayed because my Mom is sick.

This month, the “sick” got a diagnosis and the saddening prognosis that it’s not going to get any better.  She has a degenerative brain disease that’s stealing her words, her ability to calculate and reason, and her ability to process language.  She’s losing herself, and I’m losing her.  It kills me.

That, more than anything, surprised me.  I tend not to think of myself as sentimental or dependent and I’ve learned to armor myself in practicality- or so I thought.  It’s especially surprising given my often-rocky relationship with my mother.  Part of my truth-bomb this week involved shifting my perspective on that.  My mom and I have never seen eye-to-eye.  I’m liberal, bordering on pagan, extrovertedly social, and open; she’s strictly Christian, introverted, and often closed.  We’ve butted heads and admitted to not really LIKING each other very much over the years.  In spite of that, for a very long time as I grew up, it was just me and her against the world.  We’re bonded by years of teamwork as we struggled to survive and get ahead.  Even when she hasn’t liked the person she saw me as, she has supported my decisions and loved me unconditionally.  Not a lot of people can say they know what unconditional love looks like from the inside.  I can because of my mom.  She is deeply and personally important to me, and the thought of losing her- slowly, as her personality and faculties deteriorate- both frightens and devastates me.

Not talking about it.  Not blogging to share it.  Not doing the needed tasks.  Not allowing myself to admit that I am grieving and its well-founded rather than frivolous.  It all meant I could pretend it wasn’t real, that I didn’t have any reason to be sad.  Then I could push it out of my mind. Except denial and avoidance just led to anger, anger at every little thing that didn’t go my way and even general anger at the Universe itself.

That’s not “dealing”, though.  That’s avoiding a problem, and it’s not healthy.

So… here’s to me taking one step at a time and letting life move forward, even if I’m sad and scared.  Here’s to me saying it publicly and letting it be real.  Here’s to crying at random, and not being ashamed.  Here’s to self awareness and acceptance.  Here’s to my mama, and to making the best of the time we have.    Here’s to accepting that life doesn’t go the way I plan- hardly ever- and digging to find the beauty in the manure pile.

(Disclaimer: I realize this particular entry has nothing to do with writing or wandering.  Hopefully it sheds some light on why neither has been a priority lately.  My novel has been re-read, edited, and returned.  I’ll be final-drafting as the Spring continues.)

Legendary

Richard “Dick” Sauerwine.Image

He started out as just another big, strapping farm boy, but his life was anything but ordinary.

He became: a Pearl Harbor survivor; a Navy Seal before they were Seals, doing underwater demolitions to clear the way for the march across the South Pacific; a veteran of the Korean War; a long-time sheriff’s deputy; a South Florida cattle rancher with an affinity for the circus, who rented out the back-forty to Barnum & Bailey’s big animals every winter; and much more.

He was a stern father, but a loyal husband; he married the girl who grew up next door, and never loved another woman.  He quietly embodied the real-man qualities of respect for women, constancy, hard work, creativity, listening well, and thinking before you speak.  He had intuition and great instincts, and from him I learned to heed to my gut about people.  He wasn’t religious, but he lived by his own personal code of ethics.  He loved projects, but rarely finished one.  He was a reader, a road-tripper, and adored both gadgets and plants (seriously, African violets sprang up in his steps); he shared with me his love of Western movies, driving all day, puttering in the greenhouse, and cool new science.  He had a fantastic sense of humor; nothing was funnier than ImageGrandpa sticking his dentures out at me because I stuck my tongue out at him first.  He was often quiet, but his sneezes could be heard from space, and when he laughed it filled the whole house.  If you caught him in the right mood, he was a champion story-teller, and loved to tell about The War.

He was a fixture in my life for 35 years; he lived to the ripe, old age of 92, and lent some of his stoic German determination to this quick-tempered Scottish girl.  God-speed, Pops, you will be missed!

Image

An Educational Crisis

Let me begin with the end.  Everything is fine and I’m okay.  So, there’s that.

Now:  At the end of May I started having some issues.  At first I didn’t think much of it, slightly odd girly stuff, but… eh. Within 2 weeks I ended up first at the hospital, then at an OB/GYN’s hospital office the very next day.

My Spanish is…well, let’s just say I mostly understand, and if I take my time I can get my point across, but I’m no linguist.  Thankfully, my ever-wonderful landlady was happy to go with me and try to help if I needed a translator.  Also, thankfully, I have no shame and very little modesty, or this would have been the world’s most awkward experience.

After doing some scans and muttering a lot of ominous sounding things, the doctor scheduled me for a D & C in two days and gave me stern instructions to take it easy until then.  I was scared, exhausted, and in general feeling miserable.  All I wanted to do was go HOME…which was a completely impractical idea, since healthcare in the states is stupidly expensive and the problem wouldn’t have gone away just by getting on a plane.  I stuck it out, and I learned a few things, as one always does in times of crisis.

Firstly, I learned that I maybe ought to give myself a little more credit in the language department.  Both the day of my first appointment and the day of my surgery I understood the vast majority of what the doctors and nurses said, with the exception of some big medical terms that I probably wouldn’t have understood in English either.  Pepita was with me the whole time, but as long as I was concentrating I didn’t need her to translate.  She did anyway, because I was nervous and unsure of myself, and kept asking her to clarify what I thought I had heard, but I was right every time.   It was even more obvious when I started coming out of the anesthesia in the surgical unit.   The first real thought that crossed my mind when they woke me up was, “It HURTS!”  Some man had just scraped the insides of my uterus like a Halloween pumpkin; I think I had every right to say I was in pain.  And I did.  In Spanish.  Without being clear-headed enough yet to actually think.  “Duele.”  It was my very first word, first thought, first anything.  And in short order the nurses got painkillers into my IV and I could switch from “Oww”  to “Mejor.  Gracias.”  At least until my right calf started to cramp.  But I was able to tell the doctor what was wrong, and understood completely when he told the nurse to add potassium to my drip.

Secondly, I was reminded of just how much I share my family’s disease of being incapable of resting.  I’ve tried and tried to escape it, to break the cycle of workaholism and live a more balanced existence.  And, for the most part, I’ve succeeded.  I say no.  I don’t overbook myself.  I rest and do things I love as much as I can.  I spend whole Sundays wearing nothing but yoga clothes or a bathing suit and reading.  But I’m still afflicted.  Before he let me loose from the hospital, my fatherly doctor once again, in the sternest of ways, ordered me to rest.  No going to work.  No yoga.  No swimming class.  No walking.  No being up and on my feet.  In bed, even.  “Descansas,” he commanded firmly, “por lo menos 3 dias.”  Just a few hours post-surgery, I thought, “Yeah, no problem, mister.  I can definitely sleep for three days right about now.”  That was early afternoon on Thursday.  By Saturday afternoon, I’d had conversations with a sad minimum of people, had seen even fewer faces, and was going positively crazy stuck inside my house with no one to keep me company and nothing to do.  I’d puttered in the kitchen off and on, making food or just looking for an excuse to be out of my bedroom.  I’d started working on syllabi and curriculum maps for next year’s classes.  I’d done some writing.  I’d taken a couple of short walks around the block in between rainstorms.  I’d even spent a few hours seriously wishing I could knit, just so I’d have something to do with my hands.  I was in danger of pulling my hair out until my housemate, Jennifer, suggested we take a taxi to the mall and catch a movie.  I evidently suck at resting.

Thirdly, I discovered just how much of a fishbowl I live in.  A week after my surgery I had a followup appointment to go over the results of the biopsy and make sure I was doing fine.  The doctor, who has 4 kids in our school and who I genuinely like, asked me how I was feeling, what my week had been like, how things seemed to be healing, etc.  I assured him I was feeling great.  Plenty of energy.  No more dizzy spells or weird blood pressure or fainting or anemia.  And, thankfully, a minimum of post-surgical ooze.  He then frowned and, quite literally, shook his finger at me.  “No te descansados!” he insisted.

“What?  I totally rested!  I stayed in bed for almost 3 whole days.  I slept and watched movies and barely left the house.”

Estabas en la Plaza,” he accused.

*face palm*  In a city of roughly 150,000 people, somehow, someone who knew me and knew him saw me at the mall Saturday night.  And they told him about it.  And he remembered.  And I was castigated for not resting enough.  I assume it must have been one of his kids, but who knows.  In any case, I was quick to assure him that, while I did go to the mall Saturday evening, it was only to see a movie with my housemate.  We took a taxi and we didn’t wander around the mall much while we were there.  I rested, okay!

He frowned and muttered at me, but didn’t yell any more.  He probably would have if I’d mentioned the very, very bumpy bus ride home, which left me thinking, “Ow, that kinda hurts more than it did before.”  I didn’t figure it would be worth telling him that part of the story.  Especially since I have another follow up appointment in 3-4 months to do some blood work and make sure my hormones have gone back to normal.

Finally, as irritating as the fishbowl can be, I also find myself forced to acknowledge a reality.  Back home, poor and insuranceless as I am, I would never have gotten the kind of medical care where the doctor was even able to connect my name with my face without my chart in his hand, much less the kind of care where what I do when I’m not in his office is reported, remembered, and used to remind me that I’m not invincible, where he actually thinks it matters that I take care of myself.  As much as I miss my family, my friends, and my car, there are things that are good about living here. Things that are good enough to make me want to come back next school year.

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