Flouncing.

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I’m writing for a website called The Flounce. I’ve been hired to write about caregiving, which means that I’ll be shifting all of that over there for the foreseeable future. In a way this is a relief, because the tone around here has been awful serious, more so than I intended, and while my site has always reflected whatever it is I’ve been going through (recovery, cancer scare, divorce scare, caregiving), I’d really like this to be kind of…Alzheimer’s-free. For a little while. This disease has so saturated almost everything I do, personally and creatively, that I’d like one little sanctuary where I can write about stupid shit.

That being said, before I direct anyone interested in my Caregiving Journey over to The Flounce, I do want to share that I’ve reached out for additional help, in the form of what’s called a Geriatric Care Manager (GCM). In the last 8 months or so, we’ve been really feeling cast adrift as virtually all our “free time” (meaning – the hours in which we’re not at work) is being spent shadowing my mother-in-law, because she really and truly cannot be left alone for longer than an hour nowadays. We’re all swamped – me, Kevin, Kevin’s brother and his wife – and phone calls and appointments are not happening as they should be. The GCM will help us be better organized, and help carve out a clear path for us as we look for the right place to put her.

I have to say this again and again, because people who are not living this situation simply don’t get it: you cannot “just put (someone) in a nursing home,” or assisted living facility. You don’t pack her a suitcase and drop her off. Many places, we are learning, won’t even take her because she “doesn’t require” nursing care, according to their standards.  Places that can take her are so expensive that we would blow through her savings in under a year.

We have to accept that we are probably looking at another year of having her here with us, ramping up the assistance in terms of companions and personal care aides, and continuing to turn down most invitations to stuff. I worry that our friends and family are eventually going to stop inviting us places, because we’ve become, in essence, The People Who Can’t Go Anywhere. Like, one day we’ll finally be able to go to someone’s birthday party, and we’ll still be in our living room, watching Star Trek and listening for suspicious noises upstairs, because everyone has become accustomed to precisely that.

It sounds so petty and awful to complain about that. Like, boo-hoo, we can’t go to some 80s band reunion show because my mother-in-law is slowly dying of this horrible fucking disease. She still has these brief moments of clarity, where she understands that her brain is being overtaken. I can’t fathom the nightmarishness of that. Like being held underwater and breaking the surface here and there to breathe, only to go under again. That is way more of a struggle than seeing that Peter Murphy is coming to town and trying to figure out if you can schedule/finance the “down time” to go.

It is a daily lesson in acceptance and perspective and yet I still have trouble absorbing it. Because I’m an alcoholic and an addict and I am hardwired for solipsism. I simply am not naturally selfless. Lately I’ve been re-reading Lives Of The Saints as though I’m searching for takeaways in asceticism.

Because in spite of all this, I can’t call myself an atheist. I have been falling back on what little faith I have to keep me going. And there are some (plenty, really) who’d call me weak-willed and stupid for doing so. And that’s okay. We all have our coping mechanisms. I can’t drink, but I can pray and believe I’m getting an answer. And I can ask that people who don’t agree with me not be, well, dicks about my using the tools I have at my disposal.

Cripes. I said I wasn’t going to do this. Make another post on this site about Alzheimer’s and how I can feel all of the grief and anxiety altering my DNA. It’s all going over to The Flounce, effective today, while over here it’s going to be about zombies. And cupcakes. And Keytar Bear. Hopefully. Because there’s always room for Keytar Bear.

Waking Up On Couches

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

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

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

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

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

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

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

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

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

To Say Or Not To Say

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

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

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

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

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

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

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

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

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

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

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

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

You look/sound tired.

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

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

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

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

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

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

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

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

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

You should get out more.

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

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

Let me know what I can do to help.

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

——————-

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

You’re doing a great job.

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

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

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

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

Do you want to talk about it?

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

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

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

Theft

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I’ve been robbed several times.

It’s a sickening feeling, having things taken from you. Knowing that someone feels, for whatever reason, that he or she deserves your belongings, no matter how hard you worked for them or how much they mean to you. If I were more “Zen,” I would understand that I don’t need stuff, and I would learn how not to be so attached to it.

I’ve had my wallet stolen, my purse snatched, my home broken into. I’ve gone to the trouble, each time, of making phone calls, having things replaced, taking on insurance in the event that it happens again.

But what do you do when you are in a position where you are being robbed, every day? You can’t move away from it, and there’s no insurance in the world that will cover the loss, and no phone calls you can make to replace what’s been stolen.

And the thief? Can’t be stopped.

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Looks like Panettone, doesn’t it? My friend Ben pointed out the resemblance the other day. And I laughed. Laughed at the idea of a Milanese dessert cake inside of my mother-in-law’s head. But it’s a picture of amyloid plaques. These ARE inside my mother-in-law’s head, and they are thieves. In the last 3 1/2 years, they’ve stolen her ability to write her name, read a book, drive a car, make herself a cup of coffee. They’ve stolen her recollection of our names, of how to crochet a blanket, of how to use a fork. They’ve stolen her common sense: she doesn’t know that she’s not supposed to put her underwear on OVER her pants, or put crumbled up cookies in the cat’s food bowl, or stash her mail in the dishwasher.

Caregivers live with this knowledge that we are being robbed, every single day, and there is nothing we can do to stop it. And it’s not just us, obviously. The children and grandchildren, friends and neighbors and former coworkers….they’re all being robbed. My mother-in-law is being robbed, although it gets to a point where she doesn’t seem to mind as much as we do. She seems to cheerfully accept each loss as it disappears, for the most part, until something fires through the plaques and protein tangles, and she remembers that she used to be able to do things on her own, without constant supervision. The fact that she has to have someone with her all day, every day, upsets her during those moments. And she wants an explanation that makes sense to her. She wants to negotiate. And we deny her those things. She’s being robbed AND refused.

Every morning, when we go upstairs to her apartment, we wonder what’s going to be missing. She hides things, puts them in places that make sense only to her, at that moment. The dustpan will be in the stove, or the dishwashing liquid in the cupboard with the peanut butter. She puts heirlooms and antiques out with the trash. We’ve learned to intercept these objects before they hit the curb.

But it’s not just things that I worry about as I head up the stairs. The other day she’d gotten her hair done. I sat across from her at her kitchen table as she ate her lunch, and thought – for a split second – that I could talk to her about her plans for the yard. She looked so much like the mother-in-law I’d known, that I fully expected her to talk about border plants, and soil, and seeds. But she looked at me, puzzled, and said, “You know, nobody told me that my mother died.”

I remember how I felt each time I’d been robbed. Violated, frightened, annoyed, angry, determined to not let it happen again. I feel some combination of these things all the time now, more or less, only determination has been replaced by helplessness. I can’t stop it from happening. I can’t stop her from being robbed. This illness will continue to rob her, and rob her, until she is unable to do anything for herself.

But we can keep things as familiar as possible, for as long as we are able to. We can keep her photo albums out and available. We can keep her diaries on our bookshelves, keep the little crocheted blankets and hats she started before she forgot how to finish them. We can keep the things she intended to give to her granddaughters. I will stay attached to it all. I have to.

Dear Boston Herald:

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

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

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

Until a few weeks ago.

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

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

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

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

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

Sincerely –
Lisa McColgan

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

The Art of Caregiving

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

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

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

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

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

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

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

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

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

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

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

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

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

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

President’s Day, 2014

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

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

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

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

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

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

Jesus H.

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

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

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

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

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

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

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

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

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

Because you also have to laugh. You have to.

The Year That Was.

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I’ve been saying this for several years now, but it bears repeating (mainly for myself):

I don’t have any expectations for New Year’s Eve. Or Day, for that matter. Or for the “new year” in general.

Back when I was still drinking, I placed a lot of stock in December 31st. Had to be somewhere, had to kiss someone, had to have SERIOUS resolutions involving self-improvement. Year after year, I couldn’t quite grasp the lessons that each New Year’s Eve attempted to teach me. From getting stood up to getting beaned on the noggin by a flying champagne cork, it was as if Something Out There was telling me, “Just stop. Seriously. You’re embarrassing yourself.”

And then there was New Year’s Eve 2001. My last New Year’s Eve as an active alcoholic. Nothing horrible happened that night. No screaming fights, no bouts of sobbing in the bathroom. I did pass out in the car on the way home, but on the whole, it pretty much was a “successful” night of drinking for me back then, at the end. But I woke up New Year’s Day 2002 exhausted to my very core. And I knew I had to stop drinking, if only to see if it would, possibly, make me feel better.

And so, since then, I’ve pretty much stayed home, with an array of snacks, and fallen asleep on the couch. Which is perfectly fine with me.

2013 was…rough. But it was also pretty great. I’m not one of these people with a wrist permanently affixed to my forehead come December, going on about how this year needs to BE OVER, already. I’m certainly looking forward to the HOLIDAYS being over, but condemning an entire year, to me, seems excessive.

On the not-so-awesome side, the house in which I spent my formative years was torn down to make way for a pre-fab “McMansion.” That hit me pretty hard.

And my mother-in-law continues to decline. This year was the most dramatic in terms of her loss of abilities and communication skills. Her stove has been disconnected. We’ve had to remove the stopper from her bathroom sink, after two instances of her flooding her bathroom (and subsequently, OURS). All of her meals have to be prepared for her now, either by us or her “companions” (who are with her during the day while we’re at work). Similarly, we also have taken over the feeding of her cat; that has to happen regularly – if we don’t keep the bowl full, she will put anything from potato chips to Kit Kat bars in it. In this regard, 2013 has been stressful and sad. We have been feeling the strain, as caregivers, especially hard this year. We’re both seeking help for the anxiety and depression, but we are remembering to laugh (because, come on, a Kit Kat in the cat food bowl IS pretty funny).

So we did the “Memory Walk” this year, with some friends of ours who just recently lost their dad to Alzheimer’s. So many people on that walk. So many photos along the way, of people who are still there, but not really THERE. I thought about this the other day, too, as I pulled out my copy of Music For Chameleons, which my mother-in-law had given to me years ago, when Kevin and I were just dating. I had admired Truman Capote’s work, but she turned me on to the stuff I hadn’t considered reading. She told me all about the La Côte Basque scandal, how it ruined him, how all these rich society folks felt utterly betrayed by him. It was clear that she was completely on his side. My God, she adored Truman Capote.

That woman is gone now. It’s no stretch to say it’s like a death. She’s here, in our house, but I can’t tell her now that I’m re-reading Answered Prayers, and can we talk about it some more? Holy shit, so catty. So filthy. So FABULOUS.

But, you know, maybe I’ll sit her down and read La Côte Basque 1965 aloud to her, see if that sparks something.

I don’t want to end this on a downer – 2013 marked 15 years of marriage and 11 years of sobriety. Both pretty impressive achievements if you know me.

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I got to go to the Tony Awards, too, which was also awesome.

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I performed several gigs with my Very Swell B-52s Tribute Band.

I spent several days in Los Angeles with my best friend, reconnecting in ways that I’d prayed would come about, and have. Ten fold.

I found the PERFECT. SHADE. OF. RED. LIPSTICK. That was thanks to the new great friend I made this year, Lisa Blankenship. Oh, she’s so foul and has such great taste. I love her.

And then there was the discovery of Keytar Bear:

There’s a great line from Tennessee Williams: “Sometimes — there’s God — so quickly!” That’s kind of how I feel about Keytar Bear.

I do have hopes for 2014. I’d like to think we’ll have more support systems in place for my mother-in-law, that we’ll get closer to getting her the total and professional care that she needs. (This is an ongoing legal and financial mire that we’re wading through…the best way I can explain it is that if you are super-mega-rich, or totally destitute, your needs will be 100% met if you get Alzheimer’s. If you’re middle-class, if you did what you were supposed to and socked money away into a retirement account for years and years…well…eligibility for certain benefits becomes ridiculously complicated.)

And I’ll try and drink more water.

a house in place of a home

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I had my quarterly appointment with my psych nurse yesterday. In case some of you have never had the privilege of visiting a psych nurse, here’s what happens: I read back issues of VOGUE in the waiting room until she calls me in, we talk about whether or not my current regimen of meds are working, how many milligrams over the course of how many hours I should be taking said meds, and if they should be tweaked in any way so they’re at “therapeutic levels” and I’m functioning normally (and we’ve all – me, the nurse, and my therapist – more or less decided that this means “somewhat irritable but able to get things done without acting out inappropriately or charging thousands of dollars on shoes and lipstick”).

If you’re interested – we’re holding steady, we had our prescriptions refilled for the usual pills at the usual dosage, and we’ll see her again in March.

What we didn’t talk about is the fact that my childhood home got torn down.

I mean, I don’t talk to her about stuff like that. That’s for my therapist, and for the internet.

So, yeah. The house. I was on my way home from doing a little Christmas shopping on Saturday, when I got a message from a friend of mine who grew up in the same neighborhood. He was there visiting his parents, and decided to take a stroll up the street to see my old house.

A little history: we moved there in 1980, when I was in the fifth grade. My folks sold it around 2006, after they had permanently relocated to Florida. The last time I was physically in the house was detailed in this entry from my old site. So – do the math – 25 years, pretty much. There were celebrations acknowledging 2 confirmations, 2 high school graduations, 3 college graduations, a couple of graduate school commencements, 3 weddings, and a handful of christenings in and around that house.

We were not rich, despite the assumptions many make about people who live in that particular town. We weren’t able to make too many significant “improvements” to it over the years. There was new siding, a new closet in the master bedroom, the floors downstairs were redone. But my family has always been….homey, let’s say. Or better still: not given to ostentatious displays of whatever “wealth” we had. My folks were more about meaningful road trips and education than recessed lighting and giant window treatments. The money we had went into those things, and so our house stayed in a perpetual state of “lived in.” “Redecorating” meant moving the furniture around so that it faced the television at varying angles.

It was an ersatz “Colonial” cobbled together around a pre-existing cottage that, back in the 40s, was someone’s vacation home. When you opened the closet in the kitchen, you could see the old wood siding from the original structure. Its odd construction created some problems. My sister’s bedroom, in the far back corner of the house, was heated sporadically at best. In the winter, she just piled on extra blankets. The floorboards in my room groaned alarmingly at the slightest pressure of my feet. I learned to avoid the “groan-y spots” en route to my bed or closet. The ceilings were ridiculously low, posing a constant challenge for my 6’4″ father. Because it had originally been a cottage, the rooms were small, too small to contain the sheer amount of LIVING we did there. But there were lovely, cool things about it. It had a big, magnificent fireplace in the front room, with a mantle on which we displayed my Uncle Willie’s shillelagh, which had come over with him from Ireland. On the second floor, there were four bedrooms, the largest of which belonged to my brother. The back wall, inexplicably, was a mural of a pre-explosion Mount St. Helens. I don’t think we bothered to get rid of it until around 1992.

McColgans inhabited that house for 25 years, some of which were difficult. But a lot of them were pretty great. When I think back to the defining moments which made me who I am, the crushes and the decisions and the discussions, nearly all of them took place under that roof.

In 2007, someone finally bought it. Fairly extensive renovations were made to the inside, so many that I could only barely recognize certain rooms when I went online to look at it after it went up for sale again several months ago. My bedroom had been painted a violent lime green, which horrified me, and I joked repeatedly to my friends on Facebook: “BUY MY OLD HOUSE AND PLEASE REPAINT THIS ROOM FOR THE LOVE OF ALL THAT IS HOLY I AM BEGGING YOU.”

Someone bought it. And that someone decided to tear it down.

My friend had to do a double, then a triple, take. There was no house.

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I won’t lie. I full-on SOBBED inconsolably for about a half-hour.

A big empty lot. A couple standing off to the side, perhaps the new owners, surveying it all. Talking excitedly about the big ol’ prefab house that’s going to go up. The house was too small for them, probably. Too tacky. Too lived in. It wasn’t worth salvaging what was lovely about it. Tear it down. Cart it away.

I feel….rootless. Robbed. I hadn’t set foot in that house for seven years, hadn’t LIVED there in almost 20. But it’s gone, and I’m struggling with the words to describe just WHY this hurts so much.

I can’t even drive by it and say hello. It’s gone. The fireplace, the old siding in the back of the kitchen closet, all of it. Gone.

I’ve never been shy about speaking pretty bluntly and honestly about my adolescent and teen years. They were not great, for a lot of reasons. I’m sure people wonder why I bother revisiting them over and over and over again. What can I say? I’m a fan of my teenaged self. She was a fighter. She lived in that house, and now that house is gone, except in photographs and memories.

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It feels like a death.

I called my sister, who was similarly shaken. We discussed telling our parents. We basically came to the conclusion that they were going to be rather sanguine and “Zen” about it all. They are not as attached to places as my sister and I are. We have always been painfully psychically sensitive to the absorbed energy and the “ghosts” of a place that’s seen a lot of life come in and out of its doors. We feel that energy, we see those ghosts, and we somehow believe that the dwellings themselves teem with as much spirit as its inhabitants. We’ve always been a little “other” in that regard.

And we were right. While my father did lament the demise of the fireplace, my mother was unruffled. “Bricks and mortar,” she said, “Life goes on, and you make new memories.”

I get that. But I’m still SAD, damn it.

So I sat on my couch, sniveling and feeling good and sorry for myself, when Kevin said, “I know. I know how you feel.”

I looked at him, puzzled. We are living in the house in which he grew up, the house that’s been in his family since before WWII.

“DO you?”

He stared at me, hard. “My childhood memories get taken away every day.”

Then I understood. He is losing his mother, slowly and insidiously. A little bit gets destroyed every day, when she can’t remember how to use a knife, when we have to keep her from throwing away family heirlooms that she now views as “junk,” when she can’t remember Kevin’s name.

Bricks and mortar.

A friend of mine summed it up thus: “It’s a shame when someone destroys a home in order to build a house.” But even as I (sort of) jokingly refer to this unknown couple as THE DESTROYERS, I think, “Well, how could they have known?” On paper, I suppose it made more sense for them to raze the existing structure. I’m enough of a logic junkie (thanks, Dad) to recognize the bottom line.

But my heart only recognizes one thing: they tore down my home.

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You can feel the cushion but you can’t have a seat…

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My 25th high school reunion is this coming weekend, and I’m not going.

I am feeling very torn and somewhat uncomfortable about this.

I’m not going, mainly because of “scheduling.” We are at the point in our caretaking journey where we simply cannot leave my mother-in-law unattended for any significant period of time. It’s the Saturday after Thanksgiving, and securing some kind of care is going to be nigh on impossible.

A high school friend has gone so far as to offer to COME GET ME, and let me stay at her house, just so I can be there and offer my particular brand of Snarky Running Commentary™ on the whole shebang. But I don’t feel right about leaving Kevin by himself while I’m off at some waterfront shindig with a bunch of people who probably don’t remember me, while all the while I’m worrying whether or not my upper arms look fat. Good times, right?

So I’m not going, and I’m feeling about it the way I felt 25 years ago, when I didn’t go to my prom. Am I missing something? Am I going to be denied some poignant moment of connection because I’m staying home? For years, my friends from high school have been telling me that I Really Didn’t Miss Anything™ by not going to the prom. I don’t believe them. I am certain that if someone had asked me, and I’d accepted, it would’ve been the crucial turning point of my teen years. I’m not sure exactly what would have transpired to achieve this, but I KNOW it would’ve been crucial, okay? I just know.

And now I’ve up and convinced myself that THIS reunion, unlike the previous two reunions I’ve attended, is going to be similarly, er, crucial. And the thing is, history has shown that while I’ve had a pleasant enough time at these functions, I typically tend to stick with the people that I’ve been in touch with the whole time, which to me sort of defeats the purpose of a “reunion.” I lack the balls to go up to someone who wouldn’t have given me the time of day 25 years ago, because even though I am now in my forties, and have survived everything from mental illness to cellulite in the years since I trotted across the stage wearing a giant picture of Elvis on my mortarboard (because why not?), those social constructs are still hard-wired into my brain.

I went to my 20th. I had several people tell me they recognized me because my hair is still the same (short, spiky, dyed to within an inch of its life). I stuck close to my friends from the Drama Club and the Math Team. I DID make a fairly profound connection that year. I got reacquainted with my friend Drew, someone who traveled in similar circles back then, although we never really hung out one-on-one. I wound up realizing that Drew and I have, and had, LOADS in common, and we have remained in touch. So that was nice. Nice enough that I think, “Well, if THAT happened, then what’s going to happen THIS TIME?”

And that, I think, sort of captures my alcoholism (or my “addictive personality,” if you prefer) perfectly. I live in a sort of perpetual state of expectation, and subsequent disappointment. It’s not enough that I’ve managed to maintain solid, quality friendships with so many of my high school classmates (to the point where they’re offering to put me up so I can go to this fakakta reunion). I want more, and I don’t even know exactly what it is I want MORE of. Throw in my OTHER mental health issues and I can work myself into quite an impressive lather of MORE. More memories, more connections, more of something that I can obsess over, or cultivate, depending on my state of mind.

I didn’t go to my prom, but I survived. Maybe I haven’t quite gotten over that, but I’m here. Likewise, I’ll get over not being at this reunion.

Anyway, there’s going to be a DJ. Since at least a couple of my friends from high school read this, have him or her play this one for me, ‘kay? Thanks.