The View From Upstairs.

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In looking over my stats here, I see that someone found me by searching on “Alzheimers poop in trash can.” Well. I hope you found what you were looking for. Also, yes – that is a thing that happens when you’re caring for someone with Alzheimer’s. Poop in the trash can. Among other places.

Haven’t checked in here in a while. The last couple of months have been a frenzy of boxes, packing tape, arranging pickups for donated items, and all the other unpleasantness that comes with emptying one apartment, packing up YOUR apartment, and then moving into the apartment you emptied.

We live upstairs now. We live in the apartment formerly occupied by my mother-in-law. Where we found poop in the trash can. Among other places. Where I also found, under her bed, a salad bowl containing a pair of her underpants. A small Corningware dish containing potato chips under the kitchen sink, behind a bottle of 409. Cat food in the washing machine. Where I’d sit with her every evening at dinner, trying to get her to use a fork and/or her napkin. I’d sit there and try to make conversation with her, even though we couldn’t understand one another anymore.

And I’d scan the walls and think that eventually I was going to be living here. I couldn’t fathom when that would be, but I knew that she was sliding faster into her dementia than we could keep up with. I knew that her needs had long ago surpassed our ability to fulfill them. I was terrified and depressed and exhausted, but I couldn’t show any of this to her, because even in her addled state she remained hyper-aware of the mood of those around her. Every waking minute was about keeping her calm and out of trouble. I couldn’t imagine a time when I’d be living in this apartment, and she’d be somewhere safe. But I’d mentally redecorate the place as I sat there, trying to comprehend the dying circuitry inside her head.

And here I am. I’ve done my level best to make it as not-haunted as possible. I’ve been through every room twice with a smoking bundle of sage, smudging and purging the place of all the bad juju and bad memories. And I’m mostly comfortable. We still have a bunch of boxes to unpack, but I’m giving myself permission to be leisurely about this; I’ve spent so many weeks now in a frantic push to get up here and get our former apartment at least slightly more than “broom clean” so that our friends Adam and Felicia could get in and settled by the end of March.

I’m adjusting to the notion of our house as a happy place now. Coombsie and Adam have been friends since they were boys. Adam even lived here for a few months in high school, my mother-in-law having always been unfailingly kind to Coombsie’s friends. And Felicia is the Ethel to my Lucy; the highly organized yin to my sloppy yang. I am seeing a summer of cookouts and planting and porch-sitting, of taking Adam’s daughter to breakfast at Donut Villa on the weekends he has her. We are headed into a new chapter where this house is a place we actually want to be in, where we look forward to weekends, and I’m struggling with that. We’ve spent the past 4 years waiting for the next emergency, the next giant shoe to drop through the ceiling and land on us, so this “relaxing at home” thing is new to me.

But it’s good, I know. I’m hopeful.

I’ve also stumbled upon a small degree of Tumblr fame here. I, with the help of my more Photoshop-savvy friends, have created a strange little corner of the internet where my 8th grade picture has gone from a source of embarrassment to a glorious experiment in learning to love one’s self. I have something like 3,500 followers, garnering certainly more attention than I’ve ever gotten here, or with my writing in general. I’m not entirely sure how to feel about this, but I’m running with it. Do have a visit.

The Places That Scare You.

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If you haven’t been watching the news or following the Twitstagrambook feeds of your friends and loved ones in New England, we’ve been effectively hobbled by repeated “significant weather events” for several weeks now. We have been buried under many feet of filthy, dog-pee-and-car-exhaust-riddled snow. It’s not Currier & Ives; it’s the Apocalypse. Roofs have collapsed, snow emergencies and parking bans are everywhere, and public transportation has become a terrible, terrible joke.

Because of what I’ve learned in recovery, I am grasping onto a precious few straws of gratitude in the midst of all of this. One is that we have not lost power during any of the meteorological pummelings we’ve received. Another is that my mother-in-law is snug and warm in the memory unit of the assisted living facility she’s been in since late June. I cannot even fathom how awful all of this would have been had we still been in daily, on-the-premises charge of her care. I frequently have to stop and remind myself of this as I start to complain about the 10’ piles of snow outside our house which are obstructing our view of the 10’ piles of snow across the street.

But in the midst of all of this, we’re trying to move. Granted, we’re just moving from our downstairs apartment into the upstairs apartment formerly occupied by my mother-in-law. But this has required Herculean amounts of organizational skills which I do not possess. Purging a three-bedroom apartment of possessions and clutter acquired over a period of decades, when the former occupant is still among the living, is emotionally trying and just plain shittyawfulhorrid. It is constantly second-guessing and attempting to determine value, both sentimental and monetary, of these things. What goes to charity? What gets saved for the grandchildren? What gets thrown out? I try to be efficient, and wind up wandering weepily from room to room, overwhelmed to the point of distraction.

I have, however, managed to get most of this packed up. There are boxes and boxes and boxes of stuff that can go to charity at any time, except that it can’t really, because of the aforementioned piles of snow. They have turned our fairly wide street into a barely-plowed-out path flanked on both sides by pee-stained, icy behemoths. No truck could idle there for even 10 minutes without drawing the ire of our neighbors and those who use our street as a throughway to get onto Route 1 more quickly.

I am beyond stressed about this. We have to be completely moved upstairs in a matter of weeks; our friends are moving into the downstairs apartment and must do so by the end of March. The whole shebang requires trucks. Big trucks. If I think about it too much I start getting wheezy and unhinged. I mean, more so than usual.

So I’ll talk about one thing I managed to do which I’d been putting off for a long time, and that’s empty out the cabinet under the bathroom sink. Most people would think, “What’s terrible about that? You toss a couple of bottles of Drano and a few old hairbrushes, right?”

No, friends – that cabinet was filled not only with the things you’d expect to find in a bathroom cabinet, but a whopping load of real bad mojo.

As some of you know, the final year of in-home caregiving for us was pretty bad. My mother-in-law’s mental state had deteriorated to the point where she could not/would not care for herself in the most basic ways. Brushing her teeth. Bathing. Properly disposing of toilet paper. Her Alzheimer’s had also ramped up her pre-existing OCD, causing her to scratch and pick at her skin, leading to a constant threat of cellulitis and other infections. Mornings and evenings were spent donning latex gloves and coating her hands, arms, and ankles with both prescription and over-the-counter antibiotic ointment. Because she would slap at me and yell if I tried to get her to take a bath, many times I had to give up that particular battle and use pre-moistened washing mitts, which she would permit, up to a point, when she would then threaten to scream if I came near her with them. And when incontinence became an issue, the cabinet was then the home of the flushable wipes and Depends.

So this cabinet was something I’d been trying to avoid, even with the knowledge that I no longer was responsible for any of these things on any significant level. I just didn’t want to go there. I didn’t want to open the scary bathroom cabinet and deal with the physical and symbolic throwing away of these things. I felt guilt, remorse, sorrow, fear, and resentment, in varying order and degree. It felt very much like avoiding looking under the bed, or into my psyche, really the same thing if you think about it.

But one afternoon about 2 weeks ago, I grabbed a trash bag and did it. Out went the prescription ointment, the latex gloves, the Depends. What I could handle saving, I saved (boxes of gauze pads and BandAids, hand sanitizing wipes). I tied up the bag when I was done and brought it into the room where we’re storing all the stuff that needs to be thrown out/trucked away.

Here’s where I’d like to say that I felt as though a great weight was lifted, that I was washed clean in the light of my bravery or some such bullshit. It didn’t feel great. It felt sad. It felt crappy. I have to do this. When faced with any seemingly insurmountable obstacle, my mantra has always been “It’ll get done because it HAS to get done.” You’d be surprised how calming this actually is. It’s much more of a soul balm than “You don’t have to do it alone!” or “God doesn’t give you more than you can handle!” Because I’ve found that neither of those things are necessarily true. Sometimes you do have to do it alone. You have to go to the places that scare you, even when it’s just under the sink, and you have to do it alone. Because you HAVE been given more than you can handle, and this is one less thing you have to worry about.

Comfort Food

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We had to take my mother-in-law’s 22-year-old cat, Sam, to the animal hospital to have her cremated.  Our plan had been to bury her in the backyard under a little statue of Saint Francis, but the cold snap made that nigh on impossible.  So we took her to the animal hospital where we’d been taking her for years, explaining that we’d been caring for her after my mother-in-law became just too addled by Alzheimer’s to do it herself, and that we’d continued to look after her when my mother-in-law had to move into a memory center.  And Sam seemed to know that it was time to check out, and just went to sleep.

I sat in the car and cried.  I’ve been doing that a lot over the past couple of years.  Crying for my mother-in-law.  Crying for my husband.  Crying for myself and the gradual, insidious emptiness we’ve been experiencing all this time.  And through my tears, I asked Kevin if we could go to Lendy’s.

Lendy’s is a “New York Style Deli & Restaurant” improbably sandwiched into a strip mall of dollar stores and nail salons.  We discovered it one weekend, a couple of years ago, when we had a couple of days “off” from caregiving.  My God, it’s fantastic.  Blintzes and knishes and half-sour pickles and waitresses who’ve been working there since the Reagan administration.  After we moved Mom into the memory center, we found ourselves going there after visits to break up the sadness just a little bit.  The waitresses all know us, and ask after Mom, even though they’ve never laid eyes on her.  Comfort.

And so this is where I needed to go after bringing Sam to the animal hospital.  Our favorite waitress was there.  I dried my tears and tucked into my breakfast-for-dinner and noticed a very well-dressed woman sitting with her friend in a booth across from ours.  She got up, went to the counter where they keep the macaroni salad and corned beef, and yelled into the window for the cook.  “I just wanted to say – your food is awesome.  This is the first time I’ve been here.”  Then she tottered back to the booth on her very nice boots, grabbed her very nice handbag and coat, and left with her friend, after shouting fond farewells to our waitress, like she was an old friend.

Our waitress came over to clear our plates.  “That lady there?  She just lost her husband.  55 years old.  She hadn’t eaten in FIVE DAYS.  Her friend made her come here.”

“Wow,” I said. “You know, her friend was right to bring her here. I always come here when I’m sad, and then I feel better.”

“You’re SAD, hon? Why’re ya sad?”

I explained about Sam, and what we had to do, and how we always come here when we’re feeling a bit crushed and like we can’t draw any nourishment elsewhere, like near-dying plants.  How the cases full of cream soda and pickles and day-old bagels comfort me, and how I know the waitresses here will take care of me.

She sighed.  “To do this job ya gotta be something of a psychologist, I’ll tell ya.”

My Year (sorry, Facebook)

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There are a lot of New Year’s Eve posts all over social media today, reflecting on the year going out.  Seems like a lot of us had a….challenging 2014 at best.

I opted out of the “Year In Facebook” thing that people have been doing, where –  because of algorithm wackiness – FB chooses photos that maybe aren’t the best representation of the user’s year.  For me, most of my indelible images from 2014 don’t appear on my Facebook feed:

  • Having a complete breakdown in the E.R. at Melrose Wakefield Hospital, where we sat with my totally discombobulated and frantically addled mother-in-law for over 12 hours.  Dementia + UTI = insanity on a level that I still cannot find the proper words for, some six months after the fact.  After 3 ½ years of being a primary caregiver, this is the day that broke me, utterly.  It was the day I stopped pretending I had it under control.
  • The big bag of food left on our porch, from our chef friend Sean.  The Styrofoam cooler with a couple of nights worth of meals from my childhood friend, Christine.  So many times, when someone is in crisis, we don’t know what to do, and so we say:  “Let me know what I can do,” and what I can say now, from experience, is that when you are in that kind of maelstrom, you don’t have an answer for that.  It’s not that caregivers don’t need help when you don’t hear from them after you’ve made that offer; it’s that caregivers are just stressed beyond belief and cannot even summon the words, or the courage, to request help.  Simple gestures like those of my friends made all the difference to us this year.
  • My husband sitting in the leather, Mission Style recliner, learning to tie knots.  By early summer, we had to seek placement for my mother-in-law, as her Alzheimer’s had progressed to the point where her needs far exceeded our abilities.  In the days following her move to a memory unit, we walked around the house in a fog.  When it cleared somewhat, we realized that we could DO STUFF.  So Kevin took sailing lessons on the Charles, and taught himself knots.  Me – I’m still trying to figure out what to do.  I keep going back and forth on singing lessons.  So there’s that.
  • Visiting the E.R. at Melrose Wakefield Hospital AGAIN, because this time I was walking down the street, minding my own business, when I tripped and faceplanted right on the sidewalk near the Mexican restaurant where we go for take-out.  I mention this only because in all my years of fairly severely alcoholic drinking, I never faceplanted.  I mean – never.  I certainly vomited in public, had screaming fights in parking lots, and maybe made out with people I wasn’t supposed to, but I NEVER FELL ON MY FACE.  This year?  12 1/2 years sober – I smashed up my nose and my upper lip and learned just how much it costs to take an ambulance to the E.R. for a couple of Extra Strength Tylenol, once the staff figures out that your nose isn’t broken.  Good times

I don’t want a tidy little social media package describing my year because it was anything BUT tidy.  It shook me in places I didn’t think were shakeable – or rather – it shook me in places that I didn’t even know were there to be shaken.  But there was grace, too, and laughter.  And some new friends.  And, of course, wigs.

A Shining Christmas

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Contrary to the silliness that usually goes down on my Facebook page (I keep it pretty frivolous there; I’ve found that it’s not at all wise to be otherwise on that particular platform), I have to tell you all: I am actually really struggling with the whole “making merry” thing this year.

If you’ve been following along here for a while, you know that this is the first holiday season in which we are no longer the full-time, in-home, primary caregivers for my mother-in-law, which we had been since 2010. We have thus far had several months of not jerking awake at all hours of the night, listening for footsteps, running water, and other various strange sounds not coming from our cats. We are not responsible for getting her dressed, fed, and bathed. We are not washing soiled sheets and clothes.

The unbelievable pressure we had been under has been lifted, mostly. We are still her caregivers in that we’re regular visitors at the memory unit, checking her room to see that it’s clean, checking in with the staff to make sure she’s set for lotion, Depends, and non-binding socks. We schedule her hair appointments at the little salon on her floor (as I write this, she’s probably getting her perm right now). But this is manageable. This is done without the constant undercurrent of fear that marked the last year-and-a-half of our caring for her at home.

In the depths of my depression and anxiety during that period, I would try and look ahead to this very time. The first Christmas where I could take a deep breath and enjoy myself. I held it aloft as something that would, surely, be a shining Christmas, even with the sad understanding that my mother-in-law would not be actively participating in it.

And here we are and well, I’m just not having it. Any of it. I’m dressing the part and wrapping the presents and baking the cookies. My tree is up, decorated, and lovely. But I cannot muster the cheer. I get home most nights and can’t be arsed to flip on the lighted garlands or the little ceramic “village” on the sideboard. I’ve talked to a few people about this, and the general consensus is that I’m still just emerging from the trauma of that last year-and-a-half, and that feeling completely “normal” is still a ways off. I should go easy on myself, and stop feeling pressure to make this the BEST CHRISTMAS EVER.

So I’m going through the motions while feeling sort of sleepy and intermittently sad. I might also be overcompensating a tad by eating a lot of carbs. I’m sort of looking forward to January 2nd at this point.

And I feel shitty because of this. I feel guilty because I’m having difficulty with getting into this whole holiday thing while my mother-in-law is in a memory center having no earthly clue what day it is, let alone that it’s almost Christmas. And I fall into the trap of clobbering myself for not having perspective. And mostly I just feel stupid. I should have known better to load up on expectations.

As always, humor helps. I bought this mock-ugly-Christmas-sweater not too long ago:

10425438_10102734531932890_7391550646571351082_nA coworker posted that photo on Facebook, which started this whole…trend…where my friends started posting thematic pictures for me:

10418303_2554109775630_706734808926499292_n10850042_10204446332735102_2358759221660275175_n10849935_10154994466605085_2346307634257814993_nSo, as crummy as I’ve been feeling, it did turn out to be a Shining Christmas after all.

Ranting While White

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One night, in the early 90s, I was drinking in a little bar on the campus of M.I.T. with my then-boyfriend and a couple of our friends. We were participating in an orgy of irony typical of the era: watching “Melrose Place” and drinking Knickerbocker in cans (which were ridiculously cheap – $2 each). I was buzzed and feeling somewhat out of my league, surrounded by all of these smart people, and what happened next is something that has haunted me for over two decades.

I started chastising Billy Dee Williams.

That sentence is utterly ridiculous, right? Comical, even. So hang with me for a few more sentences and I’ll explain why this is so awful.

I loudly declared that Mr. Williams was doing a “disservice” to “his community” by being the spokesperson for Colt 45, something that I personally had no problem drinking (because it was “ironic” – this was the early 90s, remember), but Billy Dee had no business promoting, because it was so abused in black neighborhoods and this was an act of betrayal that everyone should be aware of. And I, a twenty-something middle class white girl with a couple of Public Enemy records, was just the person to bring this to light, right?

(God, this is painful to write.)

All of a sudden, a young black man approached our table. “I couldn’t help but overhear what you’ve been saying about Billy Dee Williams.”

“Um, yeah?”

“Why do you think he doesn’t have the right to make his own decisions about how he wants to present himself?”

“Well, because….because what he’s doing is dangerous. Colt 45 is, like, aggressively promoted in poor neighborhoods and…that’s…um……bad…”

“So you’re basically saying that it would be like Geronimo promoting Jack Daniels.”

“I…”

“Yeah. Just checking. OK. You have a nice night.”

I squirmed in my seat, pounding another couple of $2 Knickerbockers, and stewed until the episode of “Melrose Place” was over and I could get my boyfriend to agree to leave. And I ranted at him for the entire walk home, and while we got undressed in his apartment, and even before we went to sleep. How dare that guy question my dedication to WHAT’S RIGHT. I was OPEN-MINDED AND AWARE.

Jesus.

I very much realize that I’m “uncomfortable” writing about this 20+ year old exchange because in doing so, I am outing myself as having engaged in some real smarmy, entitled bullshit. Because I know I am still on the cusp of doing so a lot of the time. Because in spite of my believing myself to be an ally, I understand that privilege drives the desire to make this about myself. Look at me. Look at how aware I am.

I tell this story because I am learning, from some really smart people whose writing pushes me to work through my discomfort and my increasing realization of my own biases and – yes – racist beliefs, that to be an ally is to listen, to share the space in quiet solidarity, and not to make what is happening right now a platform for MY opinions. It is not my place to monopolize the emotional energy. I’m not even sure that writing, and posting, this piece is the right thing to do. But I want to put it out there, to own my privilege and begin the work of unpacking it. I don’t want people cheering me on for being “brave” or assuring me that I don’t have a fuck ton of work to do on myself in the midst of all this pain and anger. That is REALLY not what I am going for.

I am saying: I have said some really dumb shit. I have been a self-styled expert on something that I personally have no experience with. I have ranted while white. I’m working on this.

An Apology

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In this age of internet-ing, it is terribly, terribly easy to engage in what a friend of mine once referred to as “fire-ready-aim” reactionism. You get upset about something. Perhaps it’s justifiable, perhaps it’s justifiable only in your tiny little head. You have this forum in which to vent. You do so, you feel “better,” and you go about your merry way.

Until someone calls you on it. And you realize that you were utterly, utterly wrong.

Several weeks ago, I went to the Guitar Center in Danvers, where I bought some gear from Mike Miano. I grossly misinterpreted his enthusiasm for meeting a woman who played drums as “sexism.” I wrote a post on this site about our exchange, instead of – you know – calling the store and asking to speak to him directly to clear up what I thought I had encountered, and arrive at a better understanding. I wrote a post instead of doing what adults do, which is to communicate. I unfairly painted a picture of him that was based on my own interpretation of our exchange.

This was wrong.

I was wrong.

I have enough recovery time under my belt to know that when I am wrong, I must promptly admit it. I can do that.

I’ve contacted Mr. Miano directly, but am also posting this here:

I’m sorry.