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.
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.
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 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.
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.
I think I was in ninth grade when I first experienced the aftermath of a death of a classmate. She wasn’t anybody that I was particularly close to; in fact I don’t think she could even be called a passing acquaintance. But I remember the makeshift “counseling center” that was assembled in the school’s library, which was then closed off in terms of browsing, studying, or anything else not directly involved with grief. And I remember some of my classmates becoming absolutely hysterical, and other classmates’ whispered opinions over whether or not someone was in the library crying “for attention,” as opposed to genuine horror over the idea that death can sweep in and grab a 14-year-old who just yesterday asked you for a piece of gum.
That was my first exposure to this idea that there was a hierarchical “right” to mourn someone’s death, based on any number of factors, not the least of which was how well you knew the person that died. If you didn’t know the person in some substantive way, any display of grief or bewilderment simply meant you were doing it for show. That you were making it about you. That you were doing it “for attention.”
Fast-forward 29 years. Now we have the internet, for better or for worse. We question the appropriateness of mourning in such an “impersonal” way. And the death of a celebrity becomes the subject of countless blogs, status updates, and poems of questionable taste. These are invariably met with scorn. You don’t know that celebrity. Why grieve publicly about that celebrity’s death? And lord help you if that celebrity dies from a drug overdose, because then you’re paying more attention to some selfish, dirty junkie than to REAL problems and people who die much more noble deaths. I’ve written about this before.
I don’t doubt that there are people in this world who unreservedly have to “make everything about them,” who post things precisely because they know they’ll get a virtual shitstorm of attention. I’ve given major side-eye to these kinds of antics, but in the end, I’d argue that anyone with a blog has decided to draw attention to themselves somehow, myself included. Here it is, less than 24 hours after Philip Seymour Hoffman was found dead in his apartment, and I’m writing about what that MEANS to me, someone who didn’t know him, who passed him on the street once, who works almost daily with someone who did know him. These are the things I weigh as I write, and they’re all found wanting. I am telling on myself here: I am doing the thing I despise by staking my claim to someone else’s tragedy. I am a tragedy vulture. Pass the carrion.
When it comes down to it, I have no right to sit here and write about the fact that I burst into tears when I found out.
But I am going to write about it anyway: I burst into tears of pure terror.
Philip Seymour Hoffman had 23 years of sobriety. 23 years of continuous, daily reprieve from the compulsion to completely destroy himself. That compulsion is something I identify with. It is the most horrifying thing in the world to live with, when it’s actively raging in your brain to the point where the need is primal, cellular: every cell in your body screams for it. And it has fuck-all to do with pleasure. You know in your very soul that the “relief” you’re getting is artificial, and temporary. But it is your only option. You simply cannot see any other way out.
Except some of us do find a way out. And we can go for a long time without whatever it was that we needed so desperately. Philip Seymour Hoffman went 23 years. And then he started abusing prescription pills. I need to stress that: heroin is likely what killed him, but pills are what took him out. Pills. We all hiss in an almost superstitious way when we hear “heroin.” Heroin is for people on the very bottom rungs. Heroin doesn’t happen to people who have it all. We shake our fists and bewail heroin as the killer, nobody wanting to acknowledge the uncomfortable fact that very often, there are “normal,” “acceptable” substances that pave the way to chasing the dragon. That alcohol kills more people than heroin.
There’s an artist I occasionally follow on Twitter. The day before Philip Seymour Hoffman died, she was tweeting about how having a drink ended her writer’s block. And several of her fans chimed in along the lines of: “Yes! Write drunk! Have a shot before embarking on anything creative! Yay!” And I thought, “This is the mindset that kept me so unwell for so many years.” This is just one of the things that could conceivably end my 11+ years of sobriety, if I don’t remain vigilant. I don’t know if people understand how very fragile sobriety is. I certainly didn’t give it as much thought I should have, until yesterday, hearing that someone with 23 years caved, gave in, and got himself killed.
That is terrifying. So terrifying that I sat on my couch and sobbed.
And so this is me making this about myself. I am frightened. I am angry. I want people to stop being so goddamned cavalier and irresponsible when it comes to addiction, to alcohol, to passing judgment. Myself included.