The Visit.

1

Yesterday we went to visit my mother-in-law for the first time since we moved her into assisted living on Wednesday.

I’m sure this sounds callous and uncaring to a lot of people:  “You didn’t see her for THREE DAYS?!”  It’s difficult for some to understand why this is actually recommended, and necessary.  If we’d shown up the very next day, it would’ve been brutal for all of us.  She would’ve wanted us to take her home, and been upset and confused as to why we couldn’t do so.  We would’ve felt even worse than we already do.  She needs to adjust.  We need to adjust.  Our roles as caregivers are changing.  And also?  After the events of the last week, we needed to decompress.

The visit went about as well as we could have hoped for.  She has not magically happily settled in, and is not blithe and serene about her new home, but she wasn’t upset by our being there, and didn’t demand to be taken home.  She was sitting in a sunny window seat with her new friend, Terry (who told us that nearly everyone on the floor was expecting twins).  They were annoyed by the fact that they couldn’t just leave whenever they wanted (something we would hear from at least three other residents during our visit), but when we got up to leave, they were engaged in folding up the paper towels I’d gotten for them, and accepted our hugs goodbye with no questions or hysterics.

She was neatly dressed and clean, as were all the other residents we saw.  She is getting physical therapy, she can muck around in the garden, she’ll be kept busy and stimulated all day. The nurse on site reported that Marcia was adjusting well, although she was quite grumpy on Friday because they wouldn’t let her move the couch in the common area.  Which, you know, was pretty much what was happening when she lived with us.

As for me – I am slowly trying to adjust to this new world in which I am not preparing her meals, getting her dressed, and trying to get her to agree to bathe.  I am not used to waking up and not having to listen for her footsteps, not rushing upstairs and keeping her from rummaging in the trash and the litterbox.  I no longer have to keep on top of her constant scratching and picking at herself, pulling her hands away from her ankles and her face.  I stand in my bedroom, helpless, not remembering what it’s like to be able to leisurely dress myself.  We were able to mow the lawn and trim the hedges this weekend without having to keep her from wandering into the street because every tiny twig or stray piece of trash throws her into a fit.

I don’t know when I am going to stop feeling like a selfish git for doing what we had to do for ALL of our sakes.  Taking a nap feels like the most goddamn selfish thing in the world.  Intellectually, I understand that this was not a “selfish” decision in the classic sense of the word.  It most definitely was, in part, an act of self-preservation.  I simply was not going to be able to go on the way we were without breaking.  Kevin, too.  We were exhausted and stressed out and grief-stricken.  We still are, to an extent.  It is going to take us a long time to heal from the effects of dealing directly with this illness on a daily basis.  We did it for nearly four years.

It’s been said before, but it bears repeating:  you truly learn who has your back when you’re in the midst of a huge crisis.  Even a simple Facebook message letting us know that we were being thought about/prayed for meant so much.  Then there were the people who went above and beyond – bringing us meals, offering to sit with Marcia so we could run errands, donating to our Alzheimer’s Walk page…but everyone who reached out and made some kind of connection helped.  It’s going to take me a long time to double back and thank everyone who has been so kind to us.  Alzheimer’s is a scary, horrible disease and to know that you’re not completely alone means everything.

I owe everyone hugs, heart emoticons, Starbucks gift cards, bags of Mint Milanos, and shoulders on which to sob.  I’m getting there.

“Normal.”

4

I’m not sure if I can get any of this out in a coherent way, but here goes…

To start, my mother-in-law is now in assisted living. She is being looked after by professionals. She will be kept active and well-fed and clean. This was the plan.

What didn’t go according to plan? The transition.

Beginning last week, things got real bad, real fast. She was losing control of certain bodily functions. I have never done so many loads of laundry (sheets, blankets, mattress protectors, pants) in so short a time span, ever. At times, we had both washing machines – hers and ours – going full throttle. We took her to her doctor, who gave a vague diagnosis of gastrointestinal distress. We fed her bananas, toast, tapioca pudding, and by Sunday evening, it looked like she might pull through.

Monday morning was chaos. She was hysterical. We couldn’t get her to leave with us to go to the emergency room. We had to call an ambulance. I rode with her, trying to distract her by pointing out that she was in a vehicle full of handsome men. She semi-leered. “HELLO THERE.” We laughed. What then followed was 12 full hours in the emergency room, trying to keep her from bolting, trying to get the staff to understand that she had dementia, she couldn’t directly answer their questions. At one point, she’d soiled herself, and we tried to get a nurse to help. The nurse looked at my mother-in-law and asked, “Are you wet?” My mother-in-law said no. The nurse looked at me and said, “She says she’s not wet.” I said, “She’s STAGE SIX ALZHEIMER’S. If you’d asked if she had kids, she would have given you the same answer.” The nurse smirked at me and left. SHE LEFT. My husband had to get quite loud to get someone in to help us. That same nurse came back, and my mother-in-law gave her loads of attitude. A brief moment of justice. This is what I’m told; at this point I’d retreated to the waiting room, where I had a complete meltdown.

After seemingly endless administrative hurdles, she was admitted to the geriatric ward. She stayed there, being treated by a couple of very kind and patient nurses, until Wednesday.

Tuesday I was in charge of packing what she’d need for assisted living. I had to go through a whole house, a whole life, and distill it all down to a half-dozen boxes. What did I remember her handling the most? What clothes to pack? I had to stop several times to cry.

I don’t remember when I’ve cried so much. When my grandfather died? Keith’s funeral? I don’t know.

Wednesday we packed a small moving truck with her bed, her dresser, and the boxes I’d packed. I spent that morning in the memory unit, in her room, getting it set up and making her bed the way she likes it made. I knew that in a matter of hours, she’d be brought in here. She would recognize these things as her own, but not the room. Not the view out of the window. Would she even question it? In all the time at the hospital, she never asked about “home.” When she was discharged and got into my brother-in-law’s car, she didn’t question the fact that he was taking her in the opposite direction. She arrived at the assisted living center and immediately complimented the carpet. We left her having cake and ice cream with her new neighbors.

Yesterday she had an accident and wouldn’t let anyone near her. My husband got the call from the center. In hindsight, this is what they need to do in the first few days – let us know if something is going awry. But at this point, my emotional circuitry was completely stripped of its insulation. I had a full-blown panic attack and had to leave the office. I was quite convinced that they were going to make us take her back. They eventually convinced her to change her clothes. But she is now going to be at another “tier” of services. Incontinence maintenance. Or something. That’s going to cost us more. Okay.

She has been there almost two full days now. I have been instructed to keep my distance for a couple of more days. Because by the end of our caregiving stint, she was calling me “Mommy.” I cannot be her mommy. I need to be her daughter-in-law again, or – barring that – a familiar, friendly face.  I am her advocate now.

To channel my inner Yoda: feeling all of the feels, I am. Yeesssssss.

I have these brief moments of panic – I have to be upstairs with her – followed by the understanding that she’s not upstairs anymore. Then, relief. Guilt at feeling relief. Sadness. Fear that something is not going to work out and she will have to move back upstairs. Guilt at feeling afraid of this. Overwhelmed by the change in guard and the new responsibilities I will be taking on as a result.  I want a break from all of these feelings. Just a little goddamn break. As I told a fellow caregiver friend, “I don’t get to have a chemical commercial break.” After they’d gotten her mother-in-law safely placed, she’d gone into a field with a bottle of Scotch, and drank and cried for over an hour. And I won’t lie – for a second or two that sounded really fucking good. But I have to remind myself that I wouldn’t be able to stop drinking and crying. It would be pretty solidly miserable all around.

I don’t know when I’m going to feel “normal” again. Here’s something: today I put on the Creepy Rabbit Mask that I keep at my desk and scared the shit out of my friend Dan. He jumped up and ran away. That felt good. About as close to “normal” as I’ve felt in months, however briefly.

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Now We Are Twelve.

1

Today marks 12 years of sobriety.  12 years without a drink.  12 years without a hangover.

I am feeling….not ambivalent about it; I mean, I have been sober almost as long as I was drinking.  I realize this is a big deal.

Right now, though, as I write this, I am feeling like I shouldn’t be celebrating anything.  My mother-in-law is so unwell, so completely addled and helpless.  Alzheimer’s is casting a vast, dark swath over nearly everything.  This past year has been brutal.  Marcia cannot live with any semblance of “independence” anymore.  She can’t fix herself something to eat, she needs help getting dressed and undressed, half of what she says is gibberish.  Up until about a week ago, she had been obsessively clawing at her ankles and calves.  She has cellulitis and is in constant danger of getting staph infections.  I have only just now been able to get her skin infections mostly cleared up, by being vigilant with the application of prescription ointment and making her wear diabetic socks (because they’re non-binding and don’t irritate her).  And the incontinence issues are becoming more and more frequent.  To add insult to injury, she won’t have anything to do with the bathtub, or with a shower.  It’s now even a battle to get her to tolerate a sponge bath.  She was lucid enough to tell me last night: “If you touch me again with that thing (the wash mitt), I am going to SCREAM.”

Next week, she moves into a memory care unit in an assisted living community.  This is ahead of schedule.  It’s ahead of schedule because we have reached a crisis point, and we really cannot have her in the house anymore.  She is not safe.  The family is all in agreement regarding this.  We cannot be her caregivers anymore.  The dynamic has to shift.  I need to be her daughter-in-law again.  Kevin needs to be her son.  We need to care for her differently now.

I am exhausted and horrified and unspeakably sad.  I want to acknowledge the importance of today, but I can’t even remember how to tell that particular story, because my story right now is about Alzheimer’s, not alcoholism.  Marcia’s illness has completely eclipsed my own.

Here’s what I can tell you:  I have not had a drink.  I have not had even a desire to drink.  There’s that.  I understand, to the very core of my being, that a drink – or ten drinks – will make none of this better.  That’s something.  That’s something I wouldn’t have if I didn’t have the support and friendship of other alcoholics and addicts.  12 years of listening to them, hearing their stories and what they have been able to move THROUGH, not AROUND, while sober, is why I have this.  There is no circumventing in recovery.

The next several days are going to be very painful.  I’ve got to go through her things and decide what goes with her into assisted living, and what doesn’t.  Clothing, pictures, knick-knacks.  My job is to decide what is the most familiar and comfortable, which is riotously insane, given that what is “familiar and comfortable” to me is, because of the way I’m wired, total oblivion.  I’ve learned to understand that you can’t live that way.

Everyone is telling me that once my mother-in-law is in assisted living, I’m going to “get my life back.”

I’m not even sure what that means anymore.

But today, anyway, I’m 12 years sober.  Chronologically, 12 was the WORST.  You couldn’t pay me to go back and live that year.  Puberty, coupled with the extreme emotional duress of having been bullied on a near-daily basis.  Maybe Sober Twelve will be better.  All the discovery without all the angst.  I hope so.

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

1

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.”

Checking In…

1

A quick check-in, since it’s been a bit.

I had a dream last night that Kevin and I were driving through my hometown, looking at Christmas lights, when our car fell into a sinkhole.   You don’t have to be a Jungian dream analyst to figure out what that’s all about.

We’re still moving – slowly – toward placement.  The paperwork is filled out, the deposit sent.  Mom has a physical next week, and we’re hoping to have someone from the assisted living center come and do an assessment around that time as well.  We’re still looking at July.  I’m still praying for July.

Sunday morning I came upstairs and she’d managed to create about seven new divots in her coffee table.  Her OCD is off the charts, even with medication, and she is driven to “clean,” even though she has long since forgotten how to actually clean something.  So she rubs away at imaginary spots with her sleeve.  You would be amazed at how much damage this does.  The table was actually covered in SAWDUST.  So I put about three coats of Murphy’s on it, and covered it with a big lace runner.

Someone at work yesterday asked me if I did anything “relaxing” this weekend.  It’s gotten to the point where, while I don’t go into the details, I also don’t exactly LIE.  I looked at her and said, simply, “I don’t have ‘relaxing’ weekends.”  And I felt shitty about it afterwards.  Because I don’t want to be the Raging Psycho In The Office, I really don’t.  My boss has started insisting that I take days off.  Because I’m starting to be the Raging Psycho In The Office.

I’m off this Friday.  I think I’m going to see a matinee of Maleficent.  The idea of a dark, climate-controlled movie theater and Angelina Jolie in a pair of giant black rubber horns sounds very comforting.  I like Angelina.  I used to think she was like that girl you knew in college who’d darken your door in the dorm and tell you her darkest secrets whether you wanted to hear them or not, and then turn around and make out with the guy you told her you liked.

And I think she probably may actually be like that, but I don’t care.  Because she also lets her kids eat potato chips but at the same time doesn’t pretend she’s “just a working mother like everyone else.”  She’s the anti-Gwyneth Paltrow, and that makes me love her a tiny little bit.

(I was in Starbucks with my friend Christopher the other morning, explaining my Angelina Jolie Theory, and when I got to the part about “She feeds her kids potato chips,” Christopher, without missing a beat, replied “…and possibly blood.”)

And in case anyone is worried…I’m still sober.  I’m not drinking.  I’m coming up on 12 years this month and I’m not about to mess that up.  It certainly isn’t going to make anything LESS stressful or sad.

I will admit, though, that I have acquired something of a handbag habit. I’ve bought two handbags over the course of the last week-and-a-half, which is certainly excessive and unnecessary.  But I mean – LOOK AT THIS HOTNESS:pxru2701_380
That’s a $450 bag that I got for $135.  DON’T YOU JUDGE ME.  I am stressed out, keeping my mother-in-law from totally destroying all of her furniture, and having dreams about sinkholes.  I NEEDED THIS BAG.

Alzheimer’s. Ranting. And Skeletor On A Kitten.

5

As we get closer to placing my mother-in-law in assisted living, I find myself breaking down more than I did when we were looking at no end in sight to this particular leg of our journey. I’d say I cry, on average, about 4 times a week now.

If all goes according to plan, she will be in assisted living by early July. And yet I am walking around in a grim little cloud of dread. This is partially because of how I’m wired. I am perpetually at the train station on the corner of Fear and Faithlessness, with my passport stamped for Worst Case Scenarioland. I’m convinced that something will go wrong, like the staff from the facility will come to evaluate her and tell us there’s no way they can take her.

And then a lot of is simply situational anxiety. We are living day-to-day in a veritable pressure cooker: Is she up? What is she doing? Can we get to the litterbox before she does (because if she gets there first, there is no telling where we’re going to find cat poop)? Is she going to try and move something she shouldn’t? Can we keep her out of the basement? What is she doing? Why are her underpants on a plate under the bed? How long have they been under the bed? How can we stop her from continually clawing at herself? What is she doing? Are we going to be able to convince her to take a bath? Is she sleeping? What is she doing?

There is no way I can “relax” under these conditions, no matter how many times people tell me to do this. I am functioning, I am remembering to breathe, and that’s about the best I can do.

And then there’s the guilt. On a good day, when she hasn’t wandered out into the yard and attempted to dig up the azalea bush with her bare hands because she doesn’t like it anymore, when she is sitting quietly and leafing through a photo album, I think to myself, “How can I do this to her? She’s fine.” I have been conditioned, as many of us have, to believe that when a loved one has Alzheimer’s, the “best thing” is for her to remain at home, surrounded by family members who may or may not have the skills to deal with the myriad issues that come with the diagnosis. And, you know, in many families that’s absolutely true. It isn’t in ours. Even with help, we cannot take care of her properly anymore, if we could even take care of her properly AT ALL, and sometimes I feel like the biggest pile of shit in the universe for my overall inability to deal.

And then yesterday I logged onto my online caregiver’s support forum, and saw a new member chastising anyone and everyone who mentioned having to put their loved ones in assisted living or a nursing facility: “They didnt give up on u why u give up on them?” Are you KIDDING me? This is a support group, right? Did I log onto the wrong forum? Is this the “Let’s Make Caregivers Feel Like Crap For Making Really Difficult Decisions” forum? What the fuck, lady?

Lord, I’m a mess. I can’t imagine what I’d be like if we didn’t have the support we do. I feel like such a selfish git for looking forward to the day I can hear that so-and-so is playing at such-and-such and realize that I can actually go, without calling my brother-in-law or the home aide service, without working around more than one other person’s schedule. I feel like a jerk for looking forward to waking up in the morning and NOT listening for running water that’s running a little TOO long. But I can’t help it. Superficial crap like this is what is keeping me going.

I hope that once she is there and safe I can breathe a little deeper and remember to not take anything for granted. Going out to eat. Running an errand without looking at the time every 10 minutes. My own ability to remember my name, the year, and who the President is.

A woman in my support group mentioned that once her journey is done, she is going to make herself available to sit with an Alzheimer’s patient for a couple of hours to give his or her caretaker a break. I nearly burst into tears when I read that. It’s an incredibly generous thing to offer. Because TIME – even an hour or two – is what we crave the most. But it’s also the thing we feel the worst about asking for. Everyone we know is busy. Busy with kids and work and plans. To ask someone to please watch my mother-in-law – who cannot carry on a conversation, play a board game, or sit through a movie – feels like I’m imposing in a huge way. I love her very much, but she is profoundly impaired and if you’re not used to this, I can tell you right now it’s a very long couple of hours.

This disease is so horrible. It’s more than memory loss. A person with Alzheimer’s doesn’t go gently into that good night…sitting in an easy chair and slowly drifting into a vague dream state. And every time a friend of mine jokes that he or she is getting Alzheimer’s because of something like lost keys, I want to scream. Stop it. You don’t have Alzheimer’s because you misplaced your iPhone. But I get it. Before I witnessed this first-hand, I said the same kind of stuff. Old Timer’s Disease. Haw haw haw. I had no fucking idea.

The statistics right now are not in anyone’s favor. The chances are very good that someone you love is going to be diagnosed with Alzheimer’s in the next few years, if it hasn’t happened already. I write about this because I have to. This is the day-to-day awfulness of watching someone slowly lose almost every bit of what made her who she was. I’d love to talk about something else, but I can’t.

I want so much to believe that we’ve done the right thing, that things will be a little easier for us, because I am so tired and so unbelievably stressed out by just the last 8 months of this.

Five years ago, Kevin and I almost split up. We came to our senses, agreed to work on ourselves and our issues, and less than a year later, my mother-in-law was diagnosed with Alzheimer’s. And then we didn’t have time to “work on ourselves and our issues” anymore. It seems they’re being worked on now, as we try to slog through all of the paperwork, appointments, and surprises that are continually being lobbed at us from doctors, lawyers, and various and sundry “administrators.” We are more of a team now than ever. We take turns ranting and quietly listening without judgment. I give his mom a bath, get her dressed, and tend to the cuts and wounds on her legs from the constant scratching. He fills out the paperwork, makes the appointments, and writes the checks. We both fix her meals and keep her apartment clean. I’m glad we stayed together. This is what needed to happen.

So there’s that. I suppose I have to give myself some credit in the midst of all this.

And in the midst of it all, I have been blown away by the simplest acts of kindness.  The friend who sent me a Starbuck’s gift card.  The religious ladies on the caregivers support forum who keep telling me they’re praying for me.  And this ridiculous thing that another friend sent to me today:

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Skeletor on a kitten.  My word, the world really is a great place, isn’t it.

Closets.

0

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

Silent House

1

I keep having dreams about my old house.

Frequent readers and/or Facebook friends know that the house in which I grew up was torn down (to make way for a fancy new one) back in November. I was pretty devastated, wrote about it, and tried to be sanguine and “Zen” about it until a couple of weeks ago, when I saw that there were VIDEOS of it being torn down.

Yes, my friends, there is video. At least two clips that I know of. Maybe more. Poke around the bowels of the internet to find it if you must.  I know that I didn’t have to hit “play” and watch it being torn into and demolished, but I did, and I’m sorry I did, because I am having dreams about my house every night now.

Sometimes, my family is still living there. We are standing around in the kitchen saying, “Wait. Didn’t the house get torn down? Why are we still here?” Last night I dreamed that I was on a college campus and the house was being used for a fraternity. I could see drunken frivolity happening in what was my bedroom window.

I wake up confused and sad and with the singularly disturbing feeling of being displaced.

Part of it, too, I’m sure, is my current “home life,” which is so fraught with bewilderment and resentment and sorrow right now that I’m finding it difficult to find sanctuary. Because we don’t have any help with my mother-in-law on weekends, most of our time is spent up in her apartment, finding tasks for her to do and keeping her occupied so that she doesn’t disassemble the dishwasher or take the screen door off its hinges (she did this last summer, and don’t think I’m not terrified she’ll do it again). And so our laundry piles up, crud gathers in the corners, and all I want to do is eat and cry. Or not eat and cry. Anxiety is wreaking havoc with my appetite.

We are at the point where “something has to be done.” There are cracks everywhere, our hearts are breaking as we watch my mother-in-law become a total stranger to us, and I feel like all we have at our disposal is a box of Band-Aids.

The other day, she stormed out her door and into the front yard. This was a new thing, since she rarely ventures outside of her own volition. She immediately began picking dead leaves off the azalea bushes, then turned her attention to the various tiny twigs on the lawn. She was scraping and digging around with her bare hands, and so when Kevin went to try and stop her before she got too dirty, she let loose with a fusillade of curses. The yard was horrible, he was horrible, this was her house. He couldn’t take it anymore (even as you understand that this is what Alzheimer’s does to a person, you can only handle so much of being told by your own mother how much you suck), so I went out and tried to calm her down.

“I just have to do a few more.”
“I know, Mom. But it’s getting late and we were going to take care of the yard this weekend.”
This is my house. And the girl I love most in the world is going to see this, and it’s not right.”

Currently, my way of dealing with her when she is like this is something I call “Acknowledge & Deflect.” It goes a little like this:

“I know. I know it’s your house and you want things to look right. And we’re going to take care of it. I know that you get frustrated because you can’t take care of things like you used to. So let’s go upstairs, and I’ll fix you some dinner, and we’ll talk about it.”

It worked. She was in a pretty good mood by the time I got her ready for bed. But then I went downstairs and sobbed.

This is her house. She herself doesn’t remember how to clean it, or fix whatever is wrong with it, and things are not to her pre-Alzheimer’s standards, and so she gets angry. I am living in her house, and I am not doing a good job of housekeeping.

My friend Megan, a young woman of great courage and character, has not seen most of her family in over a year and a half. They belong to a church whose rules of conduct are quite clear; if you do not agree, you do not belong. She wandered for quite a long time before finding new roots, but before she did, she wrote: “I don’t know where to go when I can’t go home.”

I am feeling this today, more than I should, probably. The house in which I live does not feel like home. The house that did is gone.

Last month, Kevin and I had a rare “date night” and we went to see Neil Finn.  You know, my boyfriend since around ’84 or so.  It was, as always, a great show.  But he played this one:

And I lost it.  I lost it all over the place.

I will try to connect
All the pieces you left
I will carry it on
And let you forget
I’ll remember the years
When your mind was still clear
How the laughter and life
Filled up this silent house…

We are starting to look at assisted living facilities.  We’ve met with our attorney and our Geriatric Care Manager and this is, simply, what needs to happen.  We honored our promise to her and kept her in her house for as long as she was able to safely live there.  She needs more assistance than we can provide her.  And the assistance she needs is outside of these walls she’s called hers for most of her life.  I don’t know how she is going to react to this.  I can’t explain it to her; she won’t understand.

I’ve used this blog to try and explain to people how fucking awful this disease is, how it shakes your faith to its very roots and makes you question what it really means to be YOU.  Where are you, really, when your memories and your ability to function as you once did take leave of you, until you are no longer able to live in your own home?

I don’t need to see video of my home being destroyed.  I live in a destroyed home already.

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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