So if I can’t remember the name of the kid that was in those commercials, now you know why.

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I had my quarterly check-in with my psych nurse yesterday.  I basically sat there on her giant couch, surrounded by vaguely-Pier-1-looking pillows, and said:  “I am a raging lunatic.  I am in a more or less constant state of anxiety.  I don’t remember what it’s like to NOT be this way.  I have thought about it, and thought about it.  And the thing is, I KNOW you’re not going to put me on an SSRI.  Or a benzo.”

“Nope. Absolutely not.”

“Right.  Because that was our agreement.  I can’t be on anything that I’m going to particularly ENJOY.  I don’t GET to take anything that I’m going to use as a mental vacation.”

“Mmhmm.”

“So I need to know – is what I’m on, like, the MAXIMUM of what I can take?  Because this is situational.  I get that.  I am going through something that – I don’t know – TENS OF THOUSANDS of people are dealing with right this second, right?”

“Yes…”

“So why am I like this?  A couple of weeks ago I had a total meltdown on the porch in front of our next door neighbor, Andy, who’s super nice and was very polite to me, but I’m sure he thinks I’m completely insane now.  He’s having new siding put on his house, and when I go out to get the paper in the morning, the contractors all kind of smile and wave and look away.  And maybe that’s just the way they are, but I’m thinking maybe Andy said, ‘DON’T TALK TO THE CRAZY WOMAN NEXT DOOR.'”

“I really don’t think Andy said anything like that.”

“I guess I need to stay on what I’m on, but I’ve got….a…an ANVIL on my chest.  What do I do?  I’m going to meetings.  I’m talking to other caregivers.  I never – EVER – lose my shit in front of my mother-in-law, even when she spends 40 minutes drying the sink.  DRYING THE SINK.  Did you know that’s apparently a THING?”

“Drying the sink?”

“Yeah.  It turns out that nearly every insane thing that she does is not unique.  She hoards paper towels.  I find them EVERYWHERE.  She folds them in thirds and puts them in drawers, in cabinets, in the dishwasher…”

“Uh huh.”

“…and it turns out that at least 10 other caregivers say the same thing.  Paper towels.  Kleenex.  But I really thought I was onto something new and extraordinary with the sink drying thing.  I mean she will wipe down every inch of that sink until it’s dry as a bone.  And then the other day this woman Rhonda from my group mentioned that her mother won’t stop drying the sinks, and BOOM!  My head completely exploded.”

“Wow.”

“Yeah.  God.  I’m so tired.  But I’m wired.  Tired and wired.”

“Well, I’m going to keep you on what you’re on, okay?  Only I’m going to tweak it a little so you can take 300mg more a day, if you need it.  And you probably need it.  For now.”

“Is that cool, though?  I mean, that’s not going to do anything weird?”

“Well, this would put you at 1,200mg max, which is still fine, although you MIGHT have some issues with word recall.”

“Really? Huh.  Is that why it’s called MORONtin?”

“What?”

“Never mind.”

Closets.

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At one of the Assisted Living places we’re considering, they have something that I think they called a “dressing system.”

Dementia patients who are in need of particular “service layers” that include assistance with getting dressed have two closets: a big one, which contains all of the patient’s clothing, and a smaller, almost locker-sized one, which contains ONLY the clothes that are going to be worn that day. An aide comes in, selects clothing from the Big Closet, and transfers it into the Small Closet. The Big Closet is then locked.

The idea is that patients will be less overwhelmed at having to face all of their clothing in the morning. The decision of what to wear is essentially made for them.

I kind of like this, and wish I had a Big Closet and a Little Closet. (Only instead of aides, I’d have elves doing this for me. Because elves. Or maybe magic squirrels. Yeah.)

I like it because I don’t even have Alzheimer’s and I often can’t deal with figuring out what to wear. It’s also appealing because the way I’m feeling right now, having one less decision to make is enormously appealing. Whenever Coombsie asks me what I want for dinner, I feel like crying. I don’t know what I want for dinner. Anything. Just don’t make me decide. Yesterday? I had a milkshake for lunch because I didn’t feel like chewing.

I think maybe my whole life for the time being has to be divided into two closets. The Big Closet has ALL the problems and things to be ironed out. The Small Closet has just what I have to take care of today. The problem with this model is that I am presently completely incapable of deciding what goes into the Small Closet. That’s why I need magic squirrels.

Because here’s my Big Closet right now:

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And here’s what, ideally, needs to happen:

closet2

Delicate Matters.

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Nothing really prepares you for the poop.

Intellectually, you know it’s a possibility.  You just don’t want to acknowledge it.  And so when it happens, you simply are no longer able to live in that fantasy world where poop plays no role.

Since 2010, when we moved in to help take care of my mother-in-law, I’ve regularly studied the 7 Stages and tried to ascertain where we were at, how long we’d be there, and what we could expect as the disease progressed.  We steered her through Stage 3, helping her buy Christmas and birthday presents, leaving sticky notes around her kitchen to remind her to turn the water off or close the back door.  We talked her through her depressive episodes during Stage 4, and started collecting her mail, paying her bills, and ensuring she ate regularly and took her pills.  In Stage 5, we started making sure she got herself dressed and undressed, noting that if this did not happen, she’d sleep in her jeans and sweaters, or stay in her pajamas all day.  We realized she could no longer be left alone in the house.  We hired aides to be with her on weekdays.

It was frustrating, but not insurmountable.  My brother-in-law began taking her out on Thursday nights, and began bringing her more frequently to his house so we could get a weekend off here and there.  She was addled, couldn’t really engage in any kind of meaningful conversation, but overall was cheerful and amiable.

But in the last year we’ve been witnessing and experiencing the slide into Stage 6.  She hates the bathtub now.  She refuses to take a shower.  Even washing her hair in the sink is a battle in which I frequently have to admit defeat.  I’ve been combing drugstores and medical supply companies for things like “pre-moistened bathing mitts” and “shampoo caps,” and as I buy these things, I whip past the “incontinence” section.  Because we’re not there yet, right?  Dear Jesus God please tell me that we’re not there yet.

We’re not there yet….entirely.  But we’ve been teetering on the precipice of it.

It’s poop.  I mean – I’ve changed my share of diapers.  On babies.  I have two cats.  It’s not as though I’m a stranger to poop.  And yet I live in near-daily terror of having to deal with it.  With poop other than my own.  We’ve had a handful of “situations” in the last few months, and I’m afraid I’m not a very big girl about this.

An acquaintance of mine is a CNT.  She says that in her experience, the thing that caregivers are most afraid of is poop.  Or rather, the impending likelihood of poop, as opposed to the poop itself.  The spectre of poop.  “If we ever let on to our clients how scared everyone is of it, it would be Poop Wars everywhere.”

Visit an online caregivers forum and at least a third of the threads are about poop.  I’d say I talk about poop with fellow caregivers at least 4 or 5 times a week.  Poop all over the hallway.  Poop in the bathroom wastebasket.  Poop stuffed down the drain and in the trash compactor.  People with Alzheimer’s will fixate on things like spots on the carpet or twigs on the sidewalk, will do everything in their power to create some sense of order, yet think nothing of walking around with poop on their hands.  Hygiene goes the way of the dodo, but by God, you’ve never seen a neater stack of dishrags.

But you do what you can.  What you have to do.  It’s just poop, after all.  You smile and clean it up.  You don’t argue with your loved one.  You don’t scold her.  It’s not her fault.  She isn’t doing it on purpose.  And your having to deal with it is not the worst thing in the world.  You’re the one who’s still in control of your faculties, even as you’re learning that you have absolutely no. fucking. control. over anything else.

And it always helps to laugh.  Because poop.

The Box Of Terrifying Journals

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Yeah, so….it looks like I won’t be writing for The Flounce anymore.  I won’t get into the details other than to say that stuff went down over there, enough so I don’t feel it’s the right forum for my writing.  And so we’re back to writing about Alzheimer’s, and caregiving, here.

We’ve hired the Geriatric Care Manager (GCM), and boy – she got to work immediately.  She’s speaking to our lawyer, and to Kevin, to figure out where we’re at financially.  She gave my mother-in-law what’s called the Mini Mental State Examination (MMSE).  How did she do?  Put it this way:  her neurologist gave her the MMSE last year and she scored TWO out of thirty.  This time around?  The GCM gave up after the first few questions.

She is significantly, if not severely, impaired.  She doesn’t know what day it is.  She doesn’t know my name.  And yet this morning she made her bed, as she does every morning, hospital corners and all.  This is just absolutely the most messed-up disease ever.

The GCM feels that it’s time to put her into Assisted Living.  We are not superheroes.  Her needs have far surpassed what we’re able to provide.  She needs to be somewhere with constant supervision, and the kind of stimulation that only professionals can provide.  We have done our best, for over 3 1/2 years.  We’re exhausted, and that’s even with help.

I was in the basement last night, searching for a paper I’d written in graduate school about Marilynne Robinson (specifically, Emily Dickinson’s influence on her writing, and on Housekeeping in particular).  I’d promised to look for it and send a copy to Megan Phelps-Roper, who’s been devouring Robinson’s work lately.  I didn’t find it.  I think it may have been lost in our last move.

I did, however, find The Box Of Terrifying Journals.

Now, most everyone knows that I don’t shy away from the sometimes-very-embarrassing moments in my past.  I’ve gotten onstage and read my high school diaries in front of total strangers countless times now.  But The Box Of Terrifying Journals does not cover that period of my life.  The Box Of Terrifying Journals spans the years between 1992 and 1996, which were my early-to-mid-twenties.  The period during which I was in graduate school, writing papers like the one I was now trying to find for my friend.

It’s very…interesting…to revisit that age, when one is in one’s forties and navigating a fairly brutal and emotionally devastating family crisis.  I flipped through the pages, scanning the scarily huge scrawling and strange little cartoons, and felt a combination of affection and exasperation with myself at that age.  It’s the way I feel whenever I read something on Thought Catalog.  Some of you know what I’m talking about.  “Bless your heart, but, oh, honey, no.”

During those years, I was constantly writing, constantly agonizing over musicians, and taking myself just a wee bit too seriously.

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Oy fucking vey.

I remember FEELING things so very, very deeply.  I remember feeling outraged and entitled and possessed of a preternatural wisdom.  I remember that my biggest problems involved boys (the aforementioned musicians), and that I would never get over The Great Heartbreak of losing one boy in particular.  I fueled myself on that grief, on the energy that comes about when someone’s disappearance renders them even more conspicuous and extraordinary.

Should I say it?  I am jealous of myself at that age.  Even though I was clearly exhibiting symptoms of the mental illness and addiction that would overtake me at the beginning of my thirties, I am envious of that girl’s energy.  I wish I had her “problems.”  My God, I’d kill to pour so much gusto into bad poetry about bad boyfriends.  I wish I still had that much faith in my powers.

Some of it was pretty clever, too.

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Waking Up On Couches

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For the last few days, I’ve been sick. Wiped-out, snot-blowing, Dickensian-orphan-hacking SICK.

This has made caregiving more than a little challenging, but with faith, perseverance, and DayQuil, I managed to get through the weekend.

I made it through this whole dank, dark winter without so much as a sniffle, so I should have known this was coming. Because when I get sick, it’s always an event that can stretch on for weeks. It’s just the way it happens with me. I didn’t just get swollen glands as a kid; I got some kind of freakish blockage that required several trips to Mass Eye & Ear and about a month home from school in the 4th grade. I’ve also had two staph infections, and a bout with walking pneumonia in my twenties that pretty well ravaged my immune system. So I try, very hard, not to get sick.

Because I don’t just “get a cold.” It settles deep into my lungs and renders me sleepless for nights on end. Most over-the-counter cough medicines are out of the question for me, given my history. So I just try and stay hydrated, and load up on the rancid, root-y nastiness that are Fisherman’s Friend lozenges.

And yes, friends – I have tried VapoRub on my feet, apple cider vinegar, tea with honey, and just about every other olde-tyme-y remedy out there on the internet. I suspect what I need are just plain NARCOTICS, but this would require asking Coombsie to dispense it for me (I mean, I’ve been sober 11+ years but I still don’t entirely trust myself around the “good stuff,” cough-suppressant-wise) and he’s already managing Mom’s medications.

The last couple of nights I’ve been hacking so loud and so often that I’ve retreated to the couch in the living room, so that at least Coombsie is getting some sleep.

At around 3:30 this morning, on the couch, I had an epiphany. I was thinking about actually going back to bed, because I really, REALLY didn’t want to greet the dawn on the couch. That just struck me as horribly depressing, and I realized how long it has been since I’ve needed to pass out on someone’s couch.

I’d say I had to do this very thing, oh, dozens of times throughout my twenties. I’d get too drunk to manage to get myself home, and so I’d wind up on all KINDS of couches throughout the Greater Boston/Cambridge area. Coworkers, friends, ex-boyfriends…somehow they took pity on me and let me crash on their couches. Some would make them up into some semblance of a bed. Some would just leave me to my own devices. And I’d wake up on these couches, bleary, pained, and vaguely ashamed. Often I’d just tiptoe out as soon as I’d figured out where I was and how to reach the nearest T station (TIP: look for a pile of phone or cable bills for an address, kids!), and figure out the thank you and/or apology strategies after the fact. I don’t look back on my twenties particularly fondly. I did a lot of cool stuff, managed to get two degrees, and I think I thought I was having a good time. But in the 800-watt glare of sobriety, reality, and my forties, I see a young woman running herself ragged, trying too hard, and making herself sick.

And I KNOW that I don’t live that life anymore, and I KNOW that it’s my own couch I’m sleeping on (or attempting to sleep on, anyway), and come most dawns, I don’t have anything to apologize for. I just don’t like to wake up on my couch. I don’t like to start the day from my couch. It’s not natural.

To Say Or Not To Say

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I spent part of Sunday with my arms plunged deep into my mother-in-law’s washing machine, because my fingers were small enough to dig underneath the agitator to fish out about a quarter of a can’s worth of cat food.

Why was it in the washing machine? Oh, grasshoppers – ours is not to question these things. We live our lives straddling the line between “real life” and “Alzheimer’s life,” where the washing machine becomes the trash can, a can opener becomes part of an art installation, where used paper towels are to be lovingly folded and saved but an antique menorah goes into the trash.

Most days, we can navigate the randomness of living with someone with Alzheimer’s. We truly have to be in “One Day At A Time” mode around here. We try very hard not to say, “Well, next year she’ll be someplace where she can be looked after, and we’ll be able to do this, and this,” because the fact is we don’t know that. There are no guarantees in this life. It could be another year, it could be another three years. So we keep things, as much as we are able to, in the day.

I feel like all I talk about is Alzheimer’s, these days. I can’t help it; it’s kind of my LIFE right now. And I’m not even shouldering a quarter of what Kevin is bearing. I have known from the get-go that this is a progressive, degenerative, and fatal disease. 3 years ago, when she couldn’t drive anymore but could still go to the grocery store with us, I remember thinking, “This is kind of a pain, but I need to roll with this right now, because it’s going to get worse. Much worse.”

You have no idea what any traumatic situation is truly like until you’re living it.

I vent about it here because I can. Increasingly, I’m finding it more and more difficult to talk to people who aren’t going through something similar, simply because they don’t understand, and I find myself trying to explain what cannot be explained in any kind of succinct way.

I’ve always hated those xojane “How Not To Be A Dick To Someone Who ______” pieces. Mainly because of the title. People, by and large, aren’t dicks, or aren’t meaning to be dicks. But sometimes we say the wrong things without realizing it. I know that before I became a caregiver, I said most of what I’m listing below as things NOT to say, and I cringe when I think about it now. So, take this in the spirit in which it’s being offered. Here’s what not to say to a caregiver:

Why can’t you just put her in a nursing home?

We get this all the time. The short answer? It’s not that simple.

The longer answer? Medicaid will not pay for a nursing home/facility unless we can prove that it’s “medically necessary.” If we were to put her somewhere now, and pay for it entirely out-of-pocket, we would burn through her savings in pretty short order, and be right back where we started.

She is still able to more or less dress herself. If you hand her a toothbrush with toothpaste on it, she will brush her teeth. She cannot prepare meals for herself, but she mostly remembers how to use a knife and a fork when we make her something to eat. She is not incontinent (yet). She makes her own bed. Because of all this, she is not “medically eligible.” Putting cat food in the washing machine is a nuisance, but it does not warrant a nursing home.

So, please, stop asking this. It makes us feel bad, and even more stressed out, and like we’re not doing a good enough job.

You look/sound tired.

Thanks! We are tired. We are both crazily, brain-wastedly exhausted, and that’s even with the help we’re currently getting from family and aides.

We wake up, we make her breakfast, we “do the rounds” of her apartment to make sure there is nothing in the washing machine that shouldn’t be in there (like, you know, cat food), or anything else that could be potentially be a hazard (and at this point in her illness, that can be just about everything that isn’t nailed down). Then we work all day, come home, follow up on anything that needs to happen (based on the notes her aides leave), make her dinner, get her to take her pills, get her into her pajamas, and THEN think about dinner for ourselves. And I’m not even getting into the morass of paperwork that still needs to be finished, to make her eligible for this service or that service, and to get her financial ducks in a row.

So, yes, I’m sure I look/sound tired. Could you maybe compliment me on my hair instead?

You really should be doing this/that/the other thing at this point.

Believe me when I say that we KNOW what we should be doing, but because of financial and time constraints, we’re not there yet. Please don’t make us feel guilty about what is falling between the cracks.

Can’t you just put on some old movies/music and let her sit quietly?

Perhaps these things work with other dementia patients. It doesn’t work with my mother-in-law. In her well life she couldn’t sit still, and always had to be doing something. This is now exacerbated with her illness. Pre-existing anxiety issues plus Alzheimer’s is a very trying combination. She can’t sit for much longer than 15 minutes in front of a movie, and while she likes to listen to music, it doesn’t keep her from wanting to pull everything out of the china cabinet to “rearrange” it. We’ve tried, and are continuing to try, all kinds of things. Music, games, puzzles, repetitive activities. Some of them work. A lot of them don’t. Alzheimer’s symptoms vary wildly from person to person, and affect personalities differently. What works for your aunt/grandmother/co-worker’s mother may not work for Mom.

God/The Universe/The Flying Spaghetti Monster doesn’t give us more than we can handle.

I understand that this is supposed to make me feel better, but it really doesn’t. It’s very hard to look at it that way. Could it be worse? Of course it could. But when you’re in the thick of it, you don’t really have the energy to muster perspective.

You should get out more.

Do you have kids? If you do, then you understand how difficult this is. If you don’t – I’ll explain.  Of course we should get out more. But this entails securing someone to sit with Mom, because she cannot be left alone. I mean – at all. Not even for a couple of hours. It’s also not really possible to bring her with us, a lot of the time. She gets very anxious in unfamiliar settings, even if those settings were places she used to go.

Frequently, any kind of outing involves our checking weeks, and sometimes months, in advance to see if a family member can stay with her or have her stay over, or if we can get one of her aides to agree to a weekend or overnight shift. If it’s something I want to do, a lot of times I have to take one for the team, and turn the invitation down. Sometimes one of us can go do something, while the other stays home with Mom. But right now, there is no such thing as a spontaneous outing, or even a planned outing in some cases, for the both of us. We appreciate being invited to your party/show/event, but please understand if we can’t make it.

Let me know what I can do to help.

This is the toughest one to address without sounding like a total jerk. This offer always comes from a genuine, sincere place. I know this. But it puts one more thing on our ever-growing list of things to do: Call mortgage company again, call lawyer again, clean cat food out of the washing machine again, tell friend/family member what they can do to help. We’re not prepared to say right off the bat: “Great! Can you do this, or this?” We’re frequently not in a place where we even know what we need, and to be honest – we’re often afraid to ask.

——————-

Oy. I really don’t want to sound ungrateful. I know that people want to say the right thing. Here are some things that we do like to hear:

You’re doing a great job.

Even if we sometimes don’t believe it ourselves, we love hearing this. Really. So much of the time we are second-guessing our decisions, or feeling shitty because we feel like we’re so far behind on what needs to get done.

I’d like to bring over a meal/sit with Mom for a few hours so you can go out/do some research on facilities and services for you.

Not too long ago, a chef friend of ours left us a big bag of food on our front porch. Stuff that could be frozen and heated up on those nights when we were too tired to figure out dinner on our own. It was such an amazing and generous thing to do, and not something that we would have thought of on our own.

A simple offer to do something, no matter how insignificant you might think it is, means the world to caregivers.

Do you want to talk about it?

A lot of times, we would just love to unload on someone who’ll just listen without judgment or platitudes. Even if I sound rant-y and horrible. You don’t have to understand what we’re going through to just be an ear.

I really have no idea what this is like for you, but here’s Banthapug.

Banthapug makes everything better, even if it’s only for a couple of minutes.

Dear Boston Herald:

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My father, an accountant by trade, voted for John Anderson in 1980. He has always defined himself as a “fiscal conservative,” but socially he’s quite liberal. Very pro-marriage equality, believing firmly that “small government” means just that. So I’m not entirely sure you could call him a “Rockefeller Republican.” In fact, he campaigned his big ol’ heart out for Hillary Clinton, in FLORIDA, no less, so that’s also testimony to his chutzpah. An Air Force veteran, he was employed for many years by the USPS, toiling the graveyard shift, so this is a guy who understands the meaning, and value, of hard work.

Here’s what my father says about the Boston Herald: “No self-respecting FISH’d be wrapped up in that paper.”

Now, my mother-in-law was sort of the same way. Very cautious with her money, very responsible. She subscribed to the Boston Herald for many years, primarily because the comics were better than those in the Globe. Until she got Alzheimer’s. She tried, she really did, to keep up with things via the newspaper, but ultimately relied on us, her caregivers, to let her know what was happening. Reading is a struggle for her. And so we cancelled her subscription, or – rather – we had to tell you numerous times to cancel her subscription, and, eventually, the paper stopped arriving on our porch.

Until a few weeks ago.

We have a phone set up in our apartment downstairs (we live in a two-family home). It’s connected to her landline. This way, we’re able to see who has called her. We want to give her as much of a feeling of dignity and/or normalcy as possible as she continues to decline, so we didn’t take away her phone. She still gets calls from her other son, her granddaughters, her friend Ruthie who takes her out every month to get her hair done. She also gets calls from you. We can see this on the phone we have downstairs. We can only assume that someone in your subscriptions department gave her a call to see if she wanted to subscribe again. My mother-in-law, perpetually baffled yet wanting always to be polite, probably just uttered some combination of words which could be interpreted as an affirmation.

And so we explained to you, Boston Herald, what the situation was and why you really needed to stop having the paper delivered here and why we were not going to pay the bills you’d been sending to her. And so the papers stopped.

So I’m flummoxed as to why we got ANOTHER bill this afternoon. I’m afraid we were a little less polite than we were before. I thought of my beloved father as I swiftly jotted across the front of the bill:

NO SELF-RESPECTING FISH WOULD BE WRAPPED UP IN THE HERALD.

You’ll be getting it in a couple of days. Just fair warning.

Sincerely –
Lisa McColgan

PS – your comics are still better than the Globe’s, though.

The Art of Caregiving

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We’re getting a weekend “off,” effective this evening, from being caregivers.

I feel guilty for being so, well, kind of psyched about this, but I’m sure a lot of you know what I’m talking about. Kevin had mentioned our weekend to a coworker of his, a woman with a fairly new infant, and she said, “Oh, yeah…I get it. We went to visit my parents not too long ago, and on a Friday night, my husband and I spent, like, four hours in CVS. It felt like such a luxury.”

And when Kevin told me that, I said, “Oh, my GOD. That sounds AMAZING.

In many ways, caring for someone with Alzheimer’s is like caring for a small child. The person is utterly dependent upon you for just about everything, you have to make plans practically months in advance to just be able to go to a movie, and if you turn your back for even an instant, something is going to get broken/lost/drenched/flushed down the toilet.

The difference, of course, is that in most cases, a small child is going to eventually become more independent and able to follow directions. That’s not the case with a 73-year-old woman in the more advanced stages of Alzheimer’s. “Don’t use your sleeve to mop up water on the counter” means nothing to her. She is unable, more and more, to create NEW memories, so she will pretty much just continue to “clean” with her sleeves, and we will just continue to hand her paper towels, which she’ll fold up neatly and store in the dishwasher.

This morning, my mother-in-law was up and at ‘em much earlier than usual, and so when we went upstairs to give her breakfast, she’d already created enough minor chaos to delay our getting to work. We’ve made it so she can’t turn on the stove or stop up her bathroom sink. We’re relatively certain she won’t burn down the house, or flood our basement (again). But she can still pull all of her socks and bras out of her bureau and scatter them throughout the house in fairly short order. Why? Don’t ask. We don’t. I’m sure there’s a logic to it, but I’m frequently just too tired to crack the code there.

But there is a code. I’m certain of it. As her language skills continue to decline, she finds other ways of expressing herself.

A couple of years ago, when she started losing the ability to shop for herself, or find the words for what she needed, she relied on something that she still knew how to do, and that was to draw pictures. And so her shopping lists for us became little works of art:

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She’s since lost that ability (her home health aides tell us what she’s getting low on). But she now leaves what I refer to as her “art bombs” all over the house. They’re really fascinating.

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In a strange way, it’s both comforting and life-affirming to know that art can still happen, everywhere, to anyone, even accidentally. She can’t remember how to sign her name, but she can do this. She can communicate, in her way, what is happening to her brain. It’s shrinking. I cannot even begin to fathom what this is like, and yet here she is, telling me.

These are things that belong together. I wish I could tell you why. They’re all small. They all remind me of something. They look nice here. I’ll keep them here for a bit until I decide they need to go somewhere else. But look at them, please. Notice them. Pay attention. Be in the moment with me.

The biggest challenge for me anyway, regardless of my current caregiver status, is staying in the moment. Trying not to spiral off into a grim future, or hang onto something that’s done and gone. The present is intensely uncomfortable for me. Maybe that’s an alcoholic thing. Nothing, save early sobriety, has forced me into this state of accepting the present moment for what it is, more than caring for someone with this disease.

I’d like to think that this is the greatest “reward” for living in this house, keeping her here with us for as long as she’s able to be here. Too, I am reminded that this is what it means to be committed to someone. That whole “for better or for worse” thing. I can’t say “I didn’t sign up for THIS,” because the fact is that I DID. And that’s okay. It’s made our marriage stronger, whereas others have crumbled under this kind of day-to-day pressure. Another “reward,” although I don’t really like to think in those terms. I can name at least a half dozen friends who are going through the exact same thing. What I’m doing? Not so unusual. I don’t deserve some kind of karmic prize for this when it’s all said and done, and it’s not particularly helpful to me to expect one.

I can only hope that I’ll get to spend a few hours in CVS. Because that still sounds AMAZING.

President’s Day, 2014

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It is 10:30 in the morning, and I am sitting with my husband in a tiny office going over something we’ve been over twice now. There is a maelstrom swirling through my brain. Paperwork: copies of her Social Security card and her (now) expired driver’s license, lists of her medications, the bus schedule. The lack of guarantee that she won’t be the last one on the bus when she is taken home, and the fact that I’d left her in the day room, with people she doesn’t know, and I told her I’d be right back.

She is going to hate it. She hated it last year. She has not changed so dramatically that she is going to be even remotely on board with this. I know this. Kevin knows this. Even the Program Director at the “adult day health center,” where we have taken my mother-in-law, yet again, knows this. And yet here we are, again, because People With Clipboards don’t think that we know what’s best for this woman with whom we’ve lived, and for whom we have been caring, over the last 3 ½ years.

I walked out of there with a splitting headache. I’d told her I’d be right back. I didn’t see her again until after lunch.

And, as we predicted, she hated it. She was furious with Kevin, furious with us for bringing her there. She yelled, railed, wept. And we, in turn, were furious with the People With Clipboards who insisted we do this again, just give it a try, “we find that many people do well in group situations, where there’s more stimulation.”

But my mother-in-law is not one of those “many people.” She does well with us, with her children and grandchildren, and with her aides, but she cannot handle a room full of people; she cannot even handle a room full of people that she knows. She does best with a few people at most, listening to music, or being read to. We gauge her needs daily, respect her limitations, and try not to throw her into situations that will overwhelm her. You know, the way you’re supposed to treat someone with Alzheimer’s.

“Just give it another try.” Like insisting that someone with a peanut allergy should go ahead and have a Nutter Butter. Maybe you won’t go into anaphylactic shock this time. You really should try it again just to find out.

Jesus H.

We are trying to work with these People With Clipboards, because we have been told that they can offer us additional help, once my mother-in-law becomes eligible for it, in terms of insurance. But it’s apparently additional help on THEIR terms, terms which are seemingly non-negotiable and completely disregard the situation at hand.

We are buried up to our necks in suggestions, instructions, and assumptions.

Kevin and I take turns ranting at one another. We take turns being “the rock.” But sometimes we forget whose turn it is to be the rock, and end up yelling at each other. Two rocks yelling. That’s the worst. We’ve been through enough in our marriage to know that we can’t take this out on one another. We have to walk through this together, like we promised to each other in front of all those people 15 ½ years ago. And we will.

Even as I write this, I know that the people who care about me the most are going to be worried. Please know this: I am venting. This is where I vent.

I realize that I am not alone in this, and that I am not the only person in the world who has had to navigate her way through this particular journey. It is just nothing that I expected I would have to deal with. But then that’s the thing about expectations: you’re better off if you have as few of them as possible.

I never thought I would become something of an expert on Alzheimer’s. I suppose that’s a blessing. A friend of mine from high school is just starting to deal with this; his father was diagnosed a few months ago. I was able to send him a list of resources that we’ve discovered over the past couple of years. Because that was how I could be of immediate, specific help to him.

I read an article online not too long ago, about offering help to caregivers (or to anyone who is going through a difficult time). It cautioned well-meaning people about saying “Let me know what I can do to help.” Because it’s difficult to accept something that isn’t specific. Caregivers are often too frazzled to be able to put into words what they need. And the needs often change so quickly and so dramatically that many days, it’s like trying to put out a fire with one hand while the other is stopping up a hole in the dike. We also don’t want to be a burden. We think that what we’d like is too much to ask. So offer what you can.

The President’s Day Disaster has passed, and we will communicate our experiences with the People With Clipboards. Again. And life goes on. At present, my mother-in-law can still be with her aides during the day. She is mainly cheerful, if perpetually confused. Her thing now is to collect paper towels and napkins, which she carefully folds and stacks in the top rack of her dishwasher. The oven (which we had disconnected from the gas line months ago) holds an assortment of dishes and knick-knacks. I went up yesterday and she’d created a little altar of sorts inside the cat’s empty water bowl (a birthday candle, a miniature ceramic pig, and some old photographs). We bought her an iPod dock this week; Kevin has loaded up one of our old iPods with music she used to listen to (Jackson Browne, The Beatles, Carole King, Tina Turner). We put it on first thing in the morning, and it runs until she goes to bed. Although yesterday she figured out how to remove the iPod from the dock, and Kevin looked at the song that had been stopped in mid-play:

The irony of that notwithstanding, I told Kevin, “Well, come on – that one’s a bummer, dude; I’d take that off the playlist, or we’re going to find the whole thing – dock and all – in the dishwasher with the paper towels.”

Because you also have to laugh. You have to.

Ghosts

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I’ve been having some rather vivid nightmares lately.  About ghosts.

Now, in the echelon of Things That Scare Me, ghosts rank pretty low.  I’m always the one who will happily go into a graveyard at night.  I work in a theater that’s allegedly full of ghosts, and the only thing I’m frightened of is the possibility of offending them by referring to the Scottish Play by its actual title.

And yet the last couple of nightmares I’ve had – the ones that lead me to actually cry out in my sleep (prompting Coombsie to rouse me) – have involved ghosts.  Ghosts moving me against my will through the house.  Ghosts pulling down my bedcovers.  Ghosts controlling the elevator in which I’m riding.  The other night Coombsie woke me up as I was yelling: “I can’t make it stop…I can’t make it stop.”

I’ve perused enough dream analysis books in the Occult section of Barnes & Noble to know that these dreams are not about ghosts so much as they are about CONTROL.  Or, more to the point, my lack thereof. 

Coombsie and I live, daily, in a situation where we cannot control a lot of what is happening.  We cannot control my mother-in-law’s steady decline into full-blown dementia.  We can’t stop it from happening.  This is not something that my mother-in-law is going to “beat,” like other people beat cancer, or Lyme disease.  It is slowly and insidiously going to rob her of nearly everything that makes her who she is, and we are powerless to stop it.

The funny thing is that I’m just having these nightmares now, when we finally have daily help in place.    Coombsie’s brother takes her to his house when we need a weekend off.  She has three different nurses/aides that are with her on weekdays.  They fix her lunch, take her shopping, help her around the house, and one of them even reads In Cold Blood to her for about an hour or so a day (this might seem a tad inappropriate to most, but pre-Alzheimer’s, my mother-in-law was a HUGE Truman Capote fan…when Coombsie and I were first dating, she gave me a copy of Music For Chameleons).  They are all so wonderful and I don’t really know how we managed without them.

With a little of the pressure off, it would seem that my subconscious has kicked into overdrive.  Because I’ve felt like I’m not allowed to collapse into a weepy puddle for fear of upsetting people, I’ve pretty much maintained a party line of “everything’s OK” when asked, which of course is totally the WRONG thing to do.  Now that we’re not feeling quite so alone in this, the stress is coming out in my dreams.

I’m a recovering addict.  My whole illness feeds on a need for control, a need to know exactly how things are going to unfurl.  And that’s just not possible.  It’s even more impossible when living with someone with Alzheimer’s.  If she’s having a series of fairly lucid, “good” days, we cannot assume that this is going to remain the case.  Now that the days are getting shorter, her moods can turn on a dime.  This is called “sundowning,” and it’s very common in people with dementia.

More than ever, I’ve had to practice the things I was taught at the very beginning of my recovery:  first things first, easy does it, keep it simple, live and let live.  I hate that shit.  Platitudes are so irritating because they’re so often true.  I have to do this one day at a time.  I have to stop worrying about next weekend, and Thanksgiving, and Christmas, and a year from now, and focus on what I can do today.

But it’s scary, this having so little control.  It’s scarier than ghosts.