Tag Archives: Alzheimer’s

“Everywhere I turn, there you are…”

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I’m on Day Three of the “Facebook Cleanse” and I definitely think the problem now is not so much what I think I’m missing, but that people aren’t missing ME.

It’s kind of interesting.  I’m having kind of an existential crisis because I’m not on Facebook.  If a cat picture falls in an empty forest, does it meow?

Forget it.  I’m delirious.  The panic attacks have abated, I seem to be figuring out what’s working for me, pharmaceutically and otherwise, but I’m still tired.  It’s like I’ve suppressed this “fight or flight” instinct that has been raging under the surface for so long that it just started boiling over.  I’m not entirely sure if the contents completely boiled off, or if I’m just sedated to the point where I’m physically unable to panic.  If ravenous lions tore through the office just now, I’d probably just sit here and be like, “Whoa. Lions.” before being torn to bits.

The “vacation” from Facebook is forcing me to do other things in the evening, like read.  Write.  Remember what I used to do before my mind got wiped out by caregiver stress.  I used to do Mortified shows.  I’d read from my high school diaries in front of total strangers.  One of my favorite “threads” that came about from working with Karen Corday and Sara Faith Alterman (the producers of the Boston show) was a series of passages in which I go full-blown Norma Desmond over my high school drama club happenings.

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The entries I read from span from around 1985 to 1988, and include my very mature and measured musings on not only the high school endeavors, but those of the musicals I did every summer with a teen theatre troupe.

When I initially showed Karen and Sara this stuff, one name jumped out at them.  “Sue Tedeschi?  You mean Susan Tedeschi?”

Indeed.  Susan was the bright star of my Summer of ’86.  That was the summer we did Joseph & The Amazing Technicolor Dreamcoat.  Even then, that girl could BELT.  I was at turns awed by and insanely jealous of her.

We got older, aged out of that particular group; I went on to get some rather silly degrees and spent my twenties running around in my underwear in booze-soaked experimental theatre productions in the basements of bars.  And, well, Susan won a Grammy award.  But listen – if there was an awards show for being insanely drunk and wrapped in chains while doing a cover of a David J. song, I would have won ALL OF THE THINGS BY GOD.

Listen – this all ties together, I swear.

My mother-in-law died in February, after fighting that goddamned fucking Alzheimer’s for so long. My husband and I left the hospital to begin the process of making calls and arrangements.  And as we drove down Route 1 in Saugus, this song came on:

I don’t know if there could have been anything more oddly comforting to me in that moment.  I haven’t talked to Susan in decades.  But I know that voice in my bones.  And I sat in the car and just let it wash over me.  It didn’t stop the grief, of course not.  But it let me be in the moment for a few minutes.  I remember the grey clouds hanging over Route 1, I remember thinking that I was eventually going to need to eat something, and I remember Susan Tedeschi singing.

I’d like to thank her for that.

 

Goodbye, Marcia

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On Tuesday morning, my mother-in-law passed away, after years of battling Alzheimer’s. Kevin, his brother, and I were with her as she breathed her last.

It’s the end of a long chapter in our lives. I’m no longer her caregiver. I’m no longer her advocate. I’m not sure what to do with myself. The illness has defined me and shaped the course of my life and my writing for years. There are so many feelings.

I’m angry. I’m brain-crazedly angry at the disease and what it did to my mother-in-law. How it insidiously and slowly destroyed everything that made her who she was. And when it was done stealing her personality traits, her talents, and her memories, it went for her ability to communicate, to swallow, and to fight off the infections she kept getting.

I’m numb. I still can’t quite believe what I witnessed on Tuesday. I have never watched anyone die. I have been to countless wakes and funerals. I have seen the dead. But I have never seen someone die right before me. I am not sure how to process it. Was it beautiful? Was it awful? I have no idea. I don’t want anyone to tell me, either. I need to figure that out for myself.

I’m relieved. I’m relieved for her, because she is no longer trapped in a brain and a body that has ceased to function normally. But I would be lying if I said I wasn’t relieved for myself, for Kevin, and for our family. We no longer have to watch her disappear. The protracted, horrible, years-long goodbye is over.

I’m sad.

I’m guilt-ridden. Still. I feel guilty that we didn’t do more for her while she was living with us. We went into caregiving with absolutely NO clue as to what we were getting ourselves into. We had to learn along the way, and we made so many mistakes. I feel guilty that we had to place her somewhere. I feel guilty that there were days when the last thing I wanted to do was go visit. I feel guilty that I feel relieved that it’s over.

I’m grateful. This is harder to summon right now, because of all the aforementioned stuff. But I’m grateful to the unbelievably kind doctors and nurses at the hospital where she died, who were honest with us, who respected Marcia’s Do Not Resuscitate directive, who brought us coffee and water and snacks as we held vigil. I’m grateful to the woman from the hospice who made arrangements for Marcia to be transferred there, even as that wound up not being necessary. I’m grateful to the hospital’s chaplain who prayed over her. I’m grateful that there are people whose job it is to work with the grieving, and who do this with such compassion and gentleness. I’m grateful to the nurses and aides who took care of Marcia during the last year and a half. I’m grateful to the aides that helped us while Marcia was still living with us. I’m grateful to anyone who offered a kind word, a Starbucks card, a cooler full of food so we didn’t have to deal with cooking. I’m grateful for everyone who posted their condolences to us on Facebook. I’ve learned how weirdly comforting it is to log on and see a virtual “guestbook” of kindness.

I’m frightened. Frightened that I’m going to get Alzheimer’s, or that Kevin will. Frightened that my only memories of Marcia are of when she was ill. Surely I can remember her before that? I’ve known her for nearly twenty years, only six of which she was sick. And yet it’s all I can muster. They don’t tell you that in all the literature – how it’s going to affect YOUR memory.

Yesterday I went through her photos. I wanted an album at the funeral home. Pictures in nice frames. So I sat at the dining room table and chose all the photos of her that people would want to see. She had a big toothy smile. I do remember that. Even towards the end, she could flash one of those.

I felt better as I worked through the shoeboxes and old albums. I’m still not entirely remembering, but it’s good to have the photographic evidence.


  
  
  

Plans & Provisions

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Ever have a UTI?

Yeah, this is a great way to kick off a post, I know. Bear with me.

I used to get them a lot in my twenties. They’re horrible. They’re painful, and they can absolutely ruin your day, for days.

I also have to accept that as I get older, they’re going to make a return. They’re common in the elderly.

And when an elderly person with Alzheimer’s gets a UTI, it’s a whole other level of awful.

My mother-in-law is back in the hospital recovering from a UTI. We’d dealt with this before, when she was living with us, but we’d never seen her this wiped out from it. On Sunday, we honestly thought this was the end. As of today, she’s doing remarkably better.

This is yet another layer of the reality that is Alzheimer’s. And this is, yet again, why I’ve come to have ZERO patience with people making jokes about it (“Lost my keys again! Damn Alzheimer’s! Eh heh heh heh HEH…”). You don’t just forget where you put stuff. You don’t just blank out on names. You forget people entirely. You forget how to use utensils. You forget how to speak. You no longer have the means to communicate when something is wrong. And once all the cognitive stuff is wiped out, the disease attacks the rest of the brain, the parts that regulate things like swallowing, breathing, and fending off illness. I could break it down further, and paint quite a vivid picture of just how fucking horrible this disease is, but I’ll spare you. Just – THINK before you make an Alzheimer’s joke. Please.

And so while my mother-in-law is bouncing back from this infection, these emergencies will become more and more a part of our reality. Eventually, Aviv is not going to be able to accommodate her. Eventually, she is going to require around-the-clock nursing care. Thus, we start our next round of plans and provisions. She no longer lives with us, but the caregiving continues.

I’m tired. I’m sad. I know in my heart that this is not the life she would have wanted for herself, even as I still struggle to remember who she was before the diagnosis. The IV fluids and antibiotics have roused her. She’s sitting up, she’s cheerful, she even ate a little pasta last night. In all probability, she’ll be back at Aviv by the end of the week, having her nails done and watching Family Feud in the dayroom. I’m relieved that this wasn’t more serious, and yet I know I have to gird myself for the battles which most certainly lay ahead. Because “more serious” IS coming. Maybe not tomorrow, or next month. But it’s coming, boy howdy.

Natch, this isn’t exactly helping with my depression. But I’m managing. Trying to give myself a break here and there, by not clobbering myself over my weight gain, my periodically wanting to retreat into hours of crap television, my not being at Aviv 24/7 to make sure Marcia doesn’t get another UTI. I’m wired to feel guilty for just about everything. I can still rattle off an Act Of Contrition like nobody’s business. Your candidate doesn’t make the ballot? Hell, that’s my fault, too. Working on that.

More than ever, I’ve got to lean on that “one day at a time” thing. Because while drinking is not anywhere on the agenda today, I’ve got to do the thing that I’m constantly telling other people in recovery to do, and that’s to look down and see where my feet are. Because when I don’t do that, I’m mentally living in moments that haven’t even happened, and they’re mostly pretty grim. And they FEEL 100% real. I’m not sure that people who don’t experience anxiety like this entirely understand that last point. I can be utterly convinced the horror show in my head is totally going to happen.

In the meantime, I’m staying hydrated. *I* don’t need a UTI on top of all of this.

The Walk

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I’m on “staycation” this week.  I started with a bang, by getting my medical stuff in order for another year.  Physical, then mammogram.  Because I know how to party.

I had a Come To Jesus moment with my primary doc.  While I’m basically healthy (perfect blood pressure, cholesterol okay, nothing terribly alarming in the blood work), a few things came back which need to be addressed.  I’ve been anemic my whole life, but am now on mega-doses of Vitamin D, since my diet has been – admittedly – pretty crappy over the last few years.  I’m also now on prescription nasal spray, because I’m a pretty princess.  I’ve got swollen lymph nodes, not a total surprise, since this is also a chronic problem I’ve been dealing with since I was a kid.  TMJ, likely caused by stress.

And I need to lose weight.  Also not a surprise.  My doc hadn’t been terribly adamant about this until this most recent appointment, knowing the pressure I was under the last few years when I was still a caregiver.  But now that my mother-in-law is in a memory care facility, it’s time to deal with it.  Doctor’s orders and all.

I put on about 35 pounds in the years since we moved in to take care of her, mostly from stress-eating and not making time for myself to properly exercise.  I became extremely depressed in the final year she was living with us.  In the year since she moved into memory care, I’ve taken off about 7 pounds.  My doc would like to see me lose another 10 – 15.  I’m older now, and also on medication which slows my metabolism.  But what I’m being asked to do is hardly impossible.

I’m not obese, but I’m not at a particularly healthy weight, either.  I managed to stay connected with my recovery community, and therefore stayed sober throughout, but I fell back on other bad habits I’d worked so hard to keep under control.  Most of what I am dealing with is reversible, or treatable.

But as it stands, I’ve got extra pounds on me, and that feeds into my body image issues.  As much as I rally for body positivity, I fall short of the glory when I look in the mirror and start in on myself, saying things I would never, EVER say to a friend or loved one.  And that sucks.  I feel like I took so many steps back, that even the smallest step forward is barely noticeable.  I have so much work to do on myself, almost more than I did when I first got sober, to be honest.

I say all of this because it’s important for people to realize that caregivers of people with Alzheimer’s or other forms of dementia rarely emerge from caregiving without health problems of their own.  Are there things I could have done differently during those years?  Of course.  Ultimately, I chose to overeat.  I chose to sit on the couch and watch movies after putting my mother-in-law to bed, instead of taking that time to take a walk, or go to the gym.  I chose “comfort.”  I chose to believe that what I was doing was “self-care.”  I chose these things because I was in an incredibly stressful situation, and my coping mechanisms were compromised.  Even if I hadn’t fallen back into my food issues, I would still be dealing with the near-crippling anxiety, the TMJ, and – arguably – the elevated blood pressure.

Certainly everyone who knows someone with Alzheimer’s is affected in some way, but it’s caregivers that really take a hit.  I am no hero for doing what I did.  If I knew then what I know now, I probably wouldn’t have done it.  I’m being honest.  But it has made me more of an activist than I would have been if I hadn’t packed up the trappings of my hipster urban lifestyle to move to my husband’s childhood home and help take care of his mother.  And I see what caregiving is doing to friends of mine who don’t have the options we did.  And at least once a month, I get an email from someone whose parent has just been diagnosed.  Alzheimer’s is this vaguely awful thing that we don’t really understand until we’re in the throes of it, and see what it REALLY does.  And it’s fucking terrifying.  I cannot stress that enough.

I am doing the Walk again this year, as I have done for the past several years now.  And I intend to be even more of a voice for the people who are too exhausted to speak.  I’m lucky.  With the help of a Geriatric Care Manager, we were able to determine that we had the resources to move my mother-in-law somewhere safe.  I did not have another year of caregiving in me at the end, but I had choices.  So many caregivers don’t.  Raising funds and awareness is not simply for research towards a cure, it’s also to provide more resources for families and caregivers.  They need help, and they need to know they’re appreciated.

Grasping at Reason

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I wrote a piece for The Flounce the other day about helping friends and loved ones in crisis. Kind of a “what not to say” thing. I’m only a year out from no longer being an in-house primary caregiver, so the feelings there are still very fresh, perhaps to the point of misinterpretation.

We went to visit my mother-in-law yesterday. She has her “lively” days, and this was not one of them. She wasn’t depressed or despondent (she seldom is, and we’ve found that it’s still fairly easy to redirect her when she does become upset), but she was listless. She was sitting in the “quiet room” when we got there, napping in one of the wingback chairs, but woke up when we said her name.

What was it like? It was like interacting with a sleepy toddler. She sat in the chair, kind of cooing and babbling.

Occasionally she can eke out a partial sentence that seems like it’s going somewhere, but then it fades off into more gibberish. There are no real conversations. We can ask her how she’s doing, and sometimes she’ll remember to say “Fine.” But mostly it’s acknowledging whatever she’s saying, and not trying too hard to decipher it all. She seems contented with almost mimicking the back-and-forth of a conversation: saying something and awaiting a response. Yesterday, though, her cadence was very sing-song, like a small child consoling itself at bedtime.

Eventually, I handed her a throw pillow to fuss with, as this tends to trigger the need to tidy something, which in turn makes her a tiny bit more lucid. She stroked at it and made little furtive scratching motions on the embroidered side. She managed to do a number on several pieces of furniture that way, back when she was still in the house with us. She’d rub and rub at imaginary spots until it left divots on her coffee and dining room tables. We couldn’t salvage the coffee table in the end, but did save the dining room set. In the quiet room, there’s usually a basket of towels for someone to fold, or a box filled with sand and small plastic objects, to satisfy the urge to do repetitive tasks. I think these things must have been moved to one of the activity rooms; yesterday there were just the big leather chairs and a little white noise machine. I digress.

When we go visit, we usually pass several folks who live in the regular assisted living community, sunning themselves in Adirondack chairs or reading. The ladies are always dressed to the nines in bright colors and accessories. And I never see them without lipstick. They are fabulous. They are always happy to greet and be greeted.

I love passing them on the way in and out, but this is also painful. There are no guarantees in this life. Some of us will get to be fabulous old ladies, like my own mother, who doesn’t dare leave the house without her giant Dolce & Gabbana sunglasses that she found at a flea market.

My mother is a fabulous old lady. My mother-in-law has been essentially infantilized by her own brain.

It angers me that she’s been cheated out of being as fabulous as I know she could have been. She’s broken most of the great costume jewelry necklaces I packed for her last summer, or twisted them the around the Lladro figurines I put in her room, creating strange little works of art that make sense to no one but her. She still gets her hair and nails done (there’s a little salon on her floor called “A Cut Above”), and when she’s freshly coiffed, she looks like she could say, “Get me the hell out of this place and let’s go to Rockport.” Instead she smiles beatifically and says, “Flibberty jipsum on the mo mo mah mah mah.”

So I leave after every visit with a heaviness that’s different from when I was with her every day. It’s a combination of remorse and relief. I know that I cannot do for her what the staff can. Every morning and every evening took everything that I had, mentally and emotionally. Getting her dressed. Getting her clean. The nightly ritual of lowering all the blinds and turning off lights so that something in her mind would kick in and she’d know it was time for bed. Fighting her over taking a bath, or even getting her to agree to a once-over with a washing mitt. Keeping her from dismantling another appliance. Keeping her out of danger. That’s no longer on my daily to-do list, and I’m grateful. But my own shortcomings were such that we had to move her out of her home. I still feel guilty about this.

I leave feeling such sorrow for her, and everything that’s she’s lost. What’s fair about any of this? I talk to others who are dealing with sick parents. Sometimes you find yourself comparing your situation to another’s. “It’s worse for my dad, because he knows he’s dying.” “It’s worse for my mom, because she’s losing her mind.” The thing is – it’s ALL watching someone deteriorate. It’s ALL confronting mortality and frailty. There’s no comparison. There’s only grief.

I feel so hopeless sometimes. As much as I appreciate my life as it is right now – living in a house I’m happy to come home to, with neighbors who are engaging and funny and kind – it came at a cost. My faith in any sort of a just and concerned Universe/Higher Power/Flying Spaghetti Monster has been shaken to its core. I don’t know what or who I’m praying to, and I’m simply not at the point where I can accept entropy, or nothingness. I can’t make sense of any of this.

So I write. I talk to other people going through similar situations. There’s comfort in the similarities (“Your mother hoards paper towels? MINE DOES TOO!”). I wonder if some become sick because others need perspective, or more contact. I flail about for the right words to describe it all, hoping that in re-reading, it will make sense. I’m re-reading this now; it’s all over the goddamn place. It doesn’t matter. This is life in the shadow of illness sometimes: grasping at reason.

The Play’s The Thing.

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Geralyn is convinced I’m going to kill her.

I have to say, I almost enjoy the idea that every Sunday I go from being a vaguely-old-gothy database administrator to a scheming murderess. I always smile at Geralyn, who holds court in the back row of rocking chairs in the day room, along with Nancy, Joyce, and a few of the other more lucid ladies, before I take a seat next to my mother-in-law. Geralyn always smiles back, but invariably – several minutes into my visit – I hear her tell the others that I’m going to kill her.

“That’s the one. She stopped me in the hallway and said she’s going to MURDER ME.”
“Which one?”
“HER. The WEIRD one.”
“Oh, I don’t think that’s true. She’s here very often. I think she might be married to that nice fellow there.”
“She’s going to KILL ME. I can’t sit here with her in the room like this.”
“She’s very strange, though. I won’t argue with you there.”

This goes on at full volume, like I’m not sitting mere feet away with my mother-in-law, who’s smiling beatifically and occasionally stroking my hand.

Edith is in her wheelchair, right in front of the television. I like Edith. She’s got a series of wigs that usually wind up askew on her head by mid-afternoon. Edith repeats phrases, words, and short declaratives by way of communication: “BillClintonBillClintonBillClinton.” “You’refullashityou’refullashityou’refullashit.” I think she likes me, too. She’ll sometimes creep up next to me and stare, before making kissing noises. My mother-in-law is gently protective of Edith, patting her on the knee and saying something like, “Oh, you’re the typewriter flibberty jipsum.”

Meanwhile, in the back row, the conversation seems to have turned from my homicidal tendencies to the temperature in the day room.

“It’s cold in here, don’t you think?”
“It IS cold, yes.”
“It’s ridiculous. I’m going to the front desk and complain.”

(A pause, then:)

“Aren’t you COLD?”
“I was always a very cautious driver.”
“She asked if you’re COLD.”

Friends and acquaintances frequently ask me if I’ve seen Still Alice. They’ve seen it, and/or read it, and it was “just devastating.” Have I seen it? I want to say, “I’m in the middle of kind of living Still Alice right now, thanks.” But what I usually say is, “I don’t think I’m ready to watch that.” Both are true; it’s just that the latter response is considerably less snarky, and I’m trying really hard not to be snarky, at least where this is concerned.

There was an article in the Boston Globe recently about the “trend” in theatre right now: the preponderance of plays about dementia. How many of them so accurately depict not only the fear and despair experienced by those who are losing their minds, but the despair and exhaustion of their loved ones. As someone who’s been immersed in theatre since adolescence, I understand the importance of telling these stories onstage. As someone who studied playwriting in graduate school, carefully crafting dialogue in workshops alongside friends who would go on to create amazing work, I feel as though this is something I myself could tackle, eventually, when it’s not so goddamn raw.

The problem is that it would wind up being completely inappropriate, if not downright Ionesco-esque.

“Where is my room? Where are my clothes? “
“She flat out told me that she’s going to kill me in my SLEEP.”
“Can’t you report her to someone?”
“SHE DOESN’T LIVE HERE.”

An aide comes over, to fetch my mother-in-law. It’s time to go into the dining room for a snack.

“Marcia! Marsheeta! Happy Birthday to you…”
“Happy Birthday to you, happy birrrr…no, I’m not going to that place.”

Annnnnnd…scene.

Now We Are Thirteen.

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Today marks 13 years since I had my last drink.

This morning I tried to think about what I was going to write, and I mostly kept thinking back to what I wrote last year. It was just about a week before my mother-in-law went into memory care, and I was just barely functioning. I was on auto-pilot, just trying to get through every day, trying to knock off the tasks in front of me and hoping things wouldn’t get too FUBAR, because I honestly didn’t think I had it in me to deal with anything other than just surviving.

In a lot of ways, that was like early sobriety. Only I wasn’t entirely stripped of coping mechanisms.

This year was better. Markedly so. It wasn’t without its stressors – emptying out her apartment so we could move in, and subsequently have our friends move into the downstairs apartment, was probably one of the most emotionally taxing things I’ve done. Sorting through the personal effects of another person, trying to assign value to these objects, and all the while doing so knowing that the person is still alive, yet unable to tell you to whom things should go…that is some brutally frustrating shit, you guys. I found myself fighting resentment left and right, because as a recovering alcoholic, I really don’t get to be resentful. At least not for very long.

The further I get away from that last drink (warm Chardonnay in a plastic cup, in case anyone was wondering), the more I feel like I have to really make a concerted effort to remind myself what a bloodhound for oblivion I was. How many hostages I took because I wanted an audience.

Three years ago, I wrote this:

I don’t want congratulations — I want understanding.

I want the people out there who are drinking themselves to death to understand that there is nothing romantic about being a drunk. It is not a cultural or artistic imperative to be a drunk. Drinking does not make you a better writer, a better artist, a better musician, or a better lover. It does not make you more in touch with the Universe, your muse, your emotions, or the person you’re trying to have sex with.

I want the people still out there, still trying to make it “work,” to understand that nothing is so terrible, no emotional terrain so unnavigable, that drinking will not make worse. I want them to understand that it’s not a balm; it’s poison. At the very LEAST, it is preventing them from processing their grief, pain, or frustration in a healthy way. It’s simple physics: you meet with a lot more resistance when you try to move through fluid.

I want people who don’t suffer from addiction, and the indignities it heaps upon those of us who DO, to understand that they need to stop making jokes at our expense. I want them to understand that we are not less deserving of grief or compassion when we die from our illness.

I stand by those words. We’re still living in a culture that celebrates drunkenness in the form of cutesy “wine humor,” yet looks upon the struggling addict as weak-willed and worthy only of derision. There is still so much willful ignorance when it comes to this.

And there are still so many people who won’t get what I have. I lost another friend this year to this disease. Brian was beyond kind and patient with me in my early sobriety, when I was just a blubbering mass of exposed nerves. We went out for bagels, we got ice cream, we went to the movies. He understood my need to fill those first days and weeks with all manner of stupid, banal shit. He was also the only person – EVER – to get away with calling me “Lee.” But he struggled, too. It happens with us. It honestly doesn’t take much to shove us off the straight and narrow and right into a ditch. As horrible as it sounds, I need to see what happens when we start up again. In a terrible way, that was Brian’s last gift to me. I am not immune, nor impervious.

It was another twelve months of loss and transition, but it was also a year in which I remembered how to take really deep breaths. It was a year in which my shoulders began the slow descent from just around my ears to where they more or less are supposed to be. I can actually start focusing more on my job, and my writing. I can write about something else other than being a caregiver. I can write about vampires. I can create ridiculous Photoshopped pictures of my 8th grade self.

I’m beginning to not feel guilty about how much I enjoy weekends. I’m trying to give myself a break from thinking about all the things I could have done better, the things I could have done to – I don’t know – slow down the process of my mother-in-law’s disease. I’m trying not to put the ugly things I’m thinking about myself into the thoughts and motivations of other people. And I’m starting to take off some of the 30+ pounds I gained while being a primary caregiver.

I am really trying to better myself through simply listening. I’m also trying to avoid comments sections.

And I’m not drinking. Miraculous. Unfathomable. Fucking amazing.

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.

Let’s All Sing And Walk To The Kitchen

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On the daily schedule that’s posted outside of the door at the “Legacy Building” (where my mother-in-law has now lived for the past 6 months), at 7pm there is something called “Let’s All Sing And Walk To The Kitchen Together.” I cannot imagine how this actually goes down.

We usually visit in the afternoon or very early evening, in between lunch and dinner. We’ve walked in on various memory games (one of which involves what looks like one of those pool noodles) and movies (usually musicals), all of which are on the schedule, so I have no reason to doubt that the sing-and-walk thing happens. I just can’t imagine it. It sounds like something you’d do in daycare.

But then caring for Alzheimer’s patients is structured along very similar lines: it’s a regular schedule, with no activity (save the movies and back-to-back “Family Feud” episodes – which are hugely popular in the Legacy Building) lasting more than a half-hour, tops. Meals and snacks are always served at the same time each day. And, as more and more people are learning, music is increasingly becoming a part of the Alzheimer’s patient’s routine.

I try to imagine my mother-in-law going along with this. We did “music therapy” with her while she was still living with us. She’d be receptive to it for a little while, but then she’d invariably walk over and yank the iPod from its dock (or unplug the dock altogether) because she didn’t like the “noise” (I’ve had to tell well-meaning people on Facebook over and over again that the amazing video of an Alzheimer’s patient responding dramatically to hearing music is very wonderful indeed, but this didn’t yield nearly as miraculous a reaction from Mom, unless throwing the iPod across the room counts as miraculous). Before all this happened, if you’d told her that she’d be “singing and walking her way to the kitchen” every night at 7, you’d be treated to uproarious laughter and a fusillade of expletives.

At least I’m pretty sure that’s what she would have done. I’m finding it extraordinarily difficult to remember her the way she was, prior to diagnosis. I’ve heard this is common for caregivers: we are so immersed in watching helplessly as our loved one’s mind is erased by this illness, and we are so traumatized by it, that it’s very difficult to think back to a time where Alzheimer’s (or any serious illness, I suspect) wasn’t a daily part of our lives. So while I understand that this is somewhat normal, I’d still like very much to just be able to pull up a memory – just one goddamn memory – of what it was like to hang out with her before all of this. Pictures help, yes; I would just like to be able to summon something up on my own, without visual aids, that’s all.

I don’t know; maybe there’s something to this singing and walking to the kitchen. Might put me in a better mood.

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.