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Tag: alzheimer’s

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Go to the nursing home, he says. It will make you feel better.

I start crying before I even pull out of the garage. The thing is, I don’t think going to the nursing home will make me feel better. But not going won’t make me feel better, either. Honest to God, there is nothing at all that makes me feel better about any of this. Alzheimer’s is hell on earth for everyone it touches.

I cry most of the way down the highway. Cruise control keeps the car moving forward. I pull into the parking lot and back into a spot. I face the nursing home. I like backing in. It makes for a quick get-away. I sit there for a few minutes. Then I turn off the engine, and sit there for twenty more. I feel paralyzed. Stuck. I can’t go in, but I can’t go home, either. I war with myself. You drove all the way down here. Just go in for a few minutes. You don’t have to go in. It’ll just upset you. Drive home, before it’s too late. It’s already too late.

I watch the clouds shift and fade and deepen. It’s overcast today, but the clouds are thinner, lighter in some places. Darker and heavier in others. High above, in the distance, movement catches my eye. Birds, flying in a v-formation. They drift in and out of shapes. They are so high and so far away that it takes them a long time to reach me. I open the moonroof cover so I can look straight up and see them. They are beautiful. Then they are gone.

I make a picture. I text with my best friend. I text with my sister. I text with my husband. I cry, dry my face, and then shower it again. I take off my sunglasses and dry them off and put them back on. I do that several times. I am glad I stuck a new box of tissues in the car. I stare out the windshield. I stare down the woman who walks out to place something in her car and looks at me. Then I stare at her the second time she comes out, the time she leaves. I wonder if she wonders what I am doing. I realize if she is visiting a loved one, chances are she’s done this, too.

By the time I finally go in, I feel more fragile than ever. It is hard to walk through the heavy double doors and down the long corridors. It is hard to push the little green button that temporarily unlocks the memory care unit, allowing those of us with memories to slip in and out. It’s ironic that I always forget her room is so close to the nurse’s station. I am always surprised when I stumble upon her faster than I expect. I’m usually looking into the community room at all the other residents. There are some real characters there, and I am fond of them. Then I glance the other direction and my mother is there, in her room, looking at me.

Hi, I say. Hi, she says.

She is agitated almost from the beginning. Her head hurts. Her stomach hurts. Her elbow hurts. Twice she tries to pull off her elbow, and screams that she wants it gone. She wants to throw it in the ocean. She hits herself in the head. She calls me by my aunt’s name. She yells that she wants to go home. I cry right to her face and tell her I miss her, and then panic that hearing this will upset her. It doesn’t register. She is upset about the noise in the hallway. I close the door. I try to deflect, to distract.

I tell her I like her black and white checked pants, and she says they are awful. I tell her they are cute, and that I wish I could wear cute black and white checked pants like that, but my hips are too big. I grin. Remember what you used to say to me? You told me I have birthin’ hips. She looks at me wide-eyed. I’m sorry, she says. I’m sorry I said that. Holy shit. My mother has never apologized in her life for the myriad things she said to hurt me. So I cry again. We watch television together for a little bit, and I catch her staring at me. A blank, vacant, thousand-yard stare with no feeling behind it. I cry right to her face. This time I lie when she asks why I am crying and say that I’m sad because work is hard right now. It’s not even a good lie because I have just finished a week off for spring break, but she doesn’t know that. She tells me to find a new job, because, she says, you are amazing.

This only makes me cry more.

I’m glad I went. I’m sad I went, because with every visit I close up a little more, I withdraw a little more. It messes with my mind, every time. I’m glad I went. I wish I wouldn’t have gone in. I’m glad I went in. I don’t feel better at all. I feel a tiny bit better.

At least I have stopped crying.

Watch out. She’s writing again.

I finally, for the first time in well over a month, have time and space to write. It feels amazing. And yet, I sit here and struggle to think of some topic worthy of committing to paper. Or screen, rather.

I pulled out my laptop here at the coffee shop and, after wrapping up some membership business for St. Louis Writers Guild, decided I would actually write. I would think of erudite words and I would type them into pithy phrases sure to delight both me and my readers. If I have any readers left, that is. They’ve probably all gone off to greener pastures, tended by people who say they’re going to write and then actually do it.

There’s plenty that has happened lately, so I should have a variety of topics from which to choose. That plenty is what has, by and large, kept me from writing. It’s all so packed with emotion, though, and I don’t really feel like crying in the coffee shop. Again. Maybe I can summarize.

My mother went into the hospital, because when you keep screaming at the husband who has been caring for you for years and then throw a lamp at his head, you don’t get to stay at home any more. She is now at a facility that we don’t necessarily prefer, but is the only one that will take her given her behavior issues. Turns out lots of places don’t want to take someone who screams expletives at her aides and spits on them when they try to do such terrible things as feed and bathe her. She will never return home again. That part is hard. No, wait, all of it is hard, and all of it sucks.

I find myself in new territory: parenting a tween girl. This means that I am reviled 10% of the time, considered annoying at best 25% of the time, and clung to the remaining 65% of the time. Keep in mind these percentages shift from day to day, and there is no warning which defcon alert state is currently active. What buoys me is that her father seems to be in the same boat, so we’re paddling furiously in circles together, just trying to stay ahead of the riptide. We spend a lot of time looking at each other and shrugging. She spends a lot of time rolling her eyes and texting.

The news. It’s getting in my head and generally wreaking havoc. I find myself spending way too much time reading and watching the news, and then reading the massive amount of commentary by people who argue not with reason, logic and fact, but by lobbing ad hominem attacks, most of which are rife with misspellings and grammatical errors. Honest to God, I don’t know what bothers me more: the news itself, or America’s steady, inexorable decline away from the long-established norms of the English language. I realized that I needed to stop reading the unceasing breaking news headlines and start reading literature. So I charged up the Kindle and downloaded my book club book, which I couldn’t remember the topic of until I started reading and then remembered: freaking Nazis. Fascism is apparently quite prevalent these days. How charming.

M has launched into another one of his charming “I’m gonna travel to all the places” periods. He’s been gone over a week now, and will be gone on and off for the next, oh, month to month and a half. He’s visiting places like London, Dubai, Taiwan, Beijing, Shanghai, San Jose and other places I don’t know because he hasn’t updated the family calendar beyond blocking weeks at a time with “M on Business Travel” yet. Keep in mind that I think it’s hilarious that he’s going all over the world…and to San Jose. Yes, he knows the way. He leaves Shanghai and flies east. I think. Sometimes he flies over the North Pole, but that’s when he’s coming into the Midwest. Not sure if it’s a more direct route to the west coast.

Our email server blew up at work last week and the short story is that I went about 48 blessed hours over the weekend with no email at all, and have not had work email on my iPhone since. Then today I discovered that by granting my employer permission to tighten the electronic leash with installing email on my personal phone, I also gave them the rights to do whatever they damn well please on my personal phone. This was discovered after they inadvertently took both Safari and my camera app off my phone, without me knowing about it and most definitely without my permission. I won’t get into the details of my discovery of the missing apps, melt down, frantic Google search to figure out what the hell was going on, and rant at the tech guys, although looking back it was probably fun to watch. One of the tech guys said, with a sly smile, “Oh yeah, we could totally brick your phone if we wanted,” which may or may not have sent shivers down my spine. *cough*stalkers*cough* So I’m seriously considering scrapping work email on my personal phone altogether, both because the mental space it has freed up has been most welcoming and because I don’t need IT all up in my personal iPhone business. I google some crazy stuff sometimes, because I’m a writer, yo. Freaked me right the hell out. No, thanks.

I got a call from Zoe’s school a couple weeks ago. Or rather, from a parent at Zoe’s school. It started like this, “Hi, Amy? Yes, this is ____ from Zoe’s school. SHE’S FINE.” And then the woman explained she’s with the parent association and we laughed about how when someone from the school calls a parent it’s best to lead with the fact that your child isn’t hurt/in danger/flunking out. She then went on to ask me if I would serve as the volunteer vice chair of Zoe’s class next year, which would make me the chair of her class the following year. She told me that my name had been proposed during a nominating committee meeting and that I had been enthusiastically endorsed and then I asked what kind of drug they were all smoking because can I have some please. I also wondered if they had just gone down the parent list alphabetically and finally got to the last name and hoped I’d be the sucker to say yes. And, of course, I’m exactly that sucker. So next year I have to help put together some weekly news, which mostly involves looking at what happened this week last year and then changing the dates, and also help set up some coffees and finding hosts for a parent party or two. I’m sure there’s a whole slew of duties and responsibilities that she forgot to cover, like setting curriculum, hiring teachers, cutting the grass, and walking the head of school’s puppy, but I’ll figure it out as I go. I’m taking a calculated risk that things with my mother will be more settled by then, so I won’t be stressed out and crying every 2.5 minutes. However, given my history, there will be a whole new crisis du jour and I’ll have my hands full, but hopefully crying only every 3.7 minutes. It’s good to have dreams.

So that’s what’s been going on with me. Or some of what’s been going on with me. There is stuff I haven’t told you, like my dirty laundry. And by “dirty laundry” I mean actual dirty laundry. I have a ton of it at home. And a basket overflowing with clean laundry that I haven’t folded and put away yet because tonight…tonight was about the writing and not about the laundry. And damn, it felt good.

These are some of my recent Project 365 pictures. The project is doing exactly what it’s intended to do, and I’m so glad I decided to embark on another one. Want to see them every day? Follow me on Instagram.

Thursdays

Thursdays have been my Monday lately. Thursdays used to be my Saturday, but for the past month-plus, they are definitely Mondays.

Thursdays used to be my favorite day because of doughnuts, dress downs, and patty melts. I am a simple woman with simple pleasures. And then Thursdays consistently blew up.

It was Thursday when I found out my dad had lung cancer.

It was Thursday when I blew up my family.

It was Thursday when I realized that a week after surgery to treat the lung cancer, Daddy was still in the ICU and I still hadn’t heard him speak or laugh.

It was Thursday when the doctors did an MRI on his brain and found “something.”

I know these Thursdays because of how you remember exactly where you are when catastrophe strikes. My mother remembers (well, she used to remember) where she was when Kennedy was shot. I remember where I was when Challenger blew up, and when the twin towers fell down. I remember who was around me, how I felt, how other people reacted.

Every Thursday night I’m with my writing group. This small band of diverse people gather each week to write, to bounce ideas off each other, to celebrate victories (submissions, acceptances, the finishing of first drafts, new story ideas)…to be writerly. I was thrilled when one of them invited me to join, as this is the sort of group I’ve been longing for my whole writing life. What I didn’t realize was that this little band of writers are now much more than just the people who give me good synonyms and encourage me to keep writing.

They give me real support, the kind that goes well beyond writing.

I know this because when my life blows up each Thursday night, I am with them. And they immediately give me hugs. There is no judgment, there are no questions. Just loving concern. I sit at my computer and then I start crying and they kindly ignore me until I look up, shaking, and make eye contact and they realize I’m about ready to bolt or lose my shit or, quite possibly, both at the same time.

The hugs are the good kind. The kind that are tight and long and unrelenting. The kind that say, “I have you. You are safe, at least for this moment. I get it.”

The first time this happened I wasn’t prepared. I wasn’t prepared for these people to give so much of themselves, so much of their own humanity. Our conversations around the writing table are typically pretty light-hearted. I inevitably end up laughing and feeling so thankful that I was invited into this little community where the topics are wide-ranging and I learn something new each week. I considered this group my friends, definitely, but they were segmented into my “writing friends” group. Not my “cry my heart out friends” group. (I have those, too, but I don’t get to see them the same night each week, although I should because that would be awesome.)

Then one Thursday night all my fears and emotions about my mother’s Alzheimer’s came tumbling out, manifesting themselves awkwardly in public through my tear ducts. I stood up to bolt, because no one wants to bawl their eyes out in the local coffee house. I was cramming my belongings back into my backpack when one of my writer friends stood up, too, and wrapped me in a giant bear hug. All he said was, “I know.” And I remembered that his mother has Alzheimer’s and that he cared for her until he couldn’t anymore and that he visits her all the time in the facility that now cares for her better than he can. And I knew that he knows exactly how I feel and that I am not alone, despite feeling that way most of the time. Why do I forget I’m not the only person to go through this? Why do I think that I should hide my feelings about this because no one would understand? That’s the sort of garbage thinking that derails me completely. Left to its own devices, my brain will spin and spin, gaining in speed and destruction. It takes someone who has been there, reaching out to stop the escalation and still the spin, to get me back on track. It takes someone who knows the wide range of ever-changing emotions that comes with having a loved one with Alzheimer’s. It takes someone who can say only, “I know” and have it mean worlds. Only then can I slow down, stop, and remember that I am not alone, that there is a path through. It may not be the same path, but it’s a journey that none of us has to take alone.

I’ve written a lot over the past couple of weeks, and it has helped me feel better even though I know it’ll never be published anywhere. It’s been too dark here, though, even though the dark is sometimes comforting. I need my presence here, even while I want to hide under the covers.

Daddy’s surgery was almost two weeks ago. The surgery went fine. All the stuff after – the stuff that’s supposed to be the recovery – hasn’t gone well. At all. It took over a week and half to hear him talk. I miss his laugh. I miss his ever-present concern over our well being. Instead, I’ve seen him in conditions that I will never forget, and that will always make me cry.

They don’t know what’s going on. At first, he was aggressive when they feathered off his sedation. They don’t know why he woke up once and, even with restraints, managed to yank out his IV, his NG tube, and his chest tube. The nurses finally got him subdued and tightened his restraints and, I imagine, gave him something that knocked him on his ass for his own good.

It’s not supposed to be going like this. He’s actually supposed to be home now, grouchy but whole. He’s supposed to be grimacing as he sits up and doing his breathing exercises and setting up follow-up appointments. He’s not supposed to be still incoherent at best, and unconscious at worst.

Mom knows what’s going on, generally. She doesn’t understand why he’s not home yet, which is perfectly normal because we don’t understand, either. She forgets that she’s already been to see him today. She cries because she misses him. We all cry because we miss him.

I think perhaps the hardest part is the unknown. We don’t know what’s wrong. So we don’t know how to fix it. We don’t know when it’ll be right again.

Sometimes I’m able to step outside my reality, and look at it objectively. That’s the woman whose dad is in critical condition. That’s the woman whose father has been in the surgical ICU for almost two weeks. How sad that must be for her. I wonder what’s going to happen? I wonder how she’s dealing with that? I think I’m able to do this mostly because some part of me just can’t believe that this is what is actually happening. At work, one day last week, colleagues started showing up in my office. “I’m so sorry about your dad and mom. I had no idea.” Over and over. I realized that someone must have sent out an email. It was touching and weird all at the same time, because I have been on those emails, have felt bad for the subject of those emails, have wondered how that person is coping with so much tragedy all at once. That’s when I could step outside my reality and look at myself clinically, as someone else. That poor woman whose world is crashing around her.

My sister and I take turns breaking down and building each other up. We text and email a lot during the day. She calls me with updates after she talks to the ICU nurses. She tells me over and over that I can call them myself and get updates, but I don’t know what to say to the nurses, or how to understand what they tell me. She has the medical background. She asks questions in that special code of medical language that I can’t decipher, the code that tells her volumes through data. She gets his temperature (the highs and lows). She checks on his oxygen, on his heart rate. She knows what all the different medications are that they’re trying, and what their dosages mean. She knows which is a sedative and which is for fever and which are his normal medications that he takes on a daily basis. She takes in all those terms, all those numbers and knows if he’s doing better today than he was yesterday. I say only, “What’s going on? Is he better? Have you fixed him? Why can’t you fix him?”

When the nurses answer my sister, they speak in that shared, common language. When the nurses speak with me, they speak in the dumbed-down language that they reserve for the Muggles of the medical world. “He’s doing a bit better today! Just wait, one of these days it’ll be like flipping a switch and he’ll be back to himself!” They are kind and professional and caring to both of us.

He has started coming back to us, slowly. He started speaking yesterday. When I visited him this afternoon, I couldn’t understand much of what he was saying. He wasn’t too responsive to me, and I realized that I wasn’t speaking loud enough. The nurse bustled around, belting out questions and getting crisp responses from him. I went to leave and spoke loudly, like she did. It felt like shouting to me. “Daddy! I’m leaving now but I will be back tomorrow. I love you!” He opened his eyes, puckered his lips, and gave me a kiss. He said, “I love you.” My heart soared and everything inside stilled and the universe tilted a little bit back towards center. And I realized that I will never again take it for granted when he says, “I love you.” I will remember when he asks me, for the fifth time, “Did you lock your doors? Did you close the garage?” he is really saying, “I want you to be safe because I love you.”

This Thursday was good. I am moved into a new office at work and today felt settled there. (Maintenance hung my pictures yesterday, which always makes it feel like home.) I had a wonderful end-of-the-year lunch with colleagues after an end-of-the-year plenary faculty meeting where five of my peers were recognized for being amazing people. There were doughnuts in the faculty lounge this morning. The rain stopped and the sun came out and Daddy said, “I love you.”

I’m sitting here with a group of writers, some of us writing and some of us talking about writing, and nothing is blowing up. When I arrived tonight, anxious because of how the past Thursdays have gone, two of my writer friends immediately looked me in the eye and asked how things are going. I relaxed, and said, “Much better, thanks.”

And then I sat down and started writing.

Discussion closed

Hard week, this week. Mostly because Alzheimer’s sucks.

For new readers who aren’t familiar with my old blog, here’s the nutshell: in 2014 my mother was diagnosed with Posterior Cortical Atrophy, or PCA, which may or may not be a rare subset of Alzheimer’s. Depends on the neurologist you ask. That’s how messed up it is: experts can’t even agree on what the heck it is. Some say it’s Alzheimer’s, some say it’s unrelated, some say it’s a precursor. What we all know is this: it sucks.

Vision problems are the most obvious symptom of PCA. The eyes work, but the brain can’t process the images. She has that. But she also has all the memory issues that come with “traditional” Alzheimer’s. Her doctor’s haven’t said “Alzheimer’s,” because they know they cannot definitively diagnose Alzheimer’s without an autopsy and because they know that it’s one of the very worst diseases you can tell someone she has. But we say it. Because we know. And because when we say “PCA” to others we have to explain what PCA is and go through it all over again. Everyone knows what Alzheimer’s is.

My mother is declining fast. Well, fast to us, anyway. The thing with Alzheimer’s is that it’s different for everyone. Rates of decline and plateaus and even symptoms. Some people respond (maybe?) to certain medications. None that will stop the decline, only slow the progression. There’s not even a good way to tell that. The only certainty is that there’s a boatload of “We don’t know” involved.

I know that people deal with Alzheimer’s differently. I’m talking about the people who don’t have Alzheimer’s but know someone who does, or know someone who knows someone who does. All I can do is share my own reality, and my own coping mechanisms. They are these:

My reality is that I am losing a mother that I have desperately hoped to find my entire adult life. My relationship with my mother was contentious for years, from the time I was a teenager right up until when she forgot to be mean. I spent years mourning what I didn’t have: a close relationship full of love and support with someone I knew loved me merely by dint of giving birth to me. No questions asked. Mother + Daughter = Love. I know she loved me the very best she could. It just wasn’t enough for me. (I have never denied that I have unrealistic expectations.) I needed love without judgment. Love without criticism. But through all that, even when I didn’t realize it, part of me hoped (again, unrealistically, I know) that we’d get past all the scar tissue and eventually have a healthy, loving relationship. PCA smashed that hope, so I’m grieving anew. I’m grieving twice, once for the mother I always wanted and again for the mother I am losing. Yes, I do know how completely messed up this is. I yam what I yam.

In addition to unpacking my emotional baggage over and over, I am trying to help with care for my mother. My role has largely been managing the neurologist and getting involved when there’s bureaucracy. I am tackling the legal and insurance junk that comes with securing short- and long-term professional care. My sister’s role has largely been managing the day-to-day crises that pop up, which is remarkable in both scope and depth, and which she handles with grace and without complaint. She got the short end of the stick with this division of labor, and I know it, and I am eternally grateful for her and for everything she does. We both work full-time and have families, and Alzheimer’s is anything but convenient.

That’s my reality. Now, here’s how I cope.

I cry. A lot. I write. A lot. Even more than I cry. Thousands of words you will never see here, and which will most likely never see the light of day. I research. I get mad. I forcefully try to forget we are going through this and fail, which angers me all over again. I call or text my closest friends and I lean on them hard. And since they are incredibly kind and sturdy people, they hold me up and make me feel better. (You know who you are. I love you.) But what I really need to truly cope with this on a day-to-day basis is this: I don’t want to talk about it unless I want to talk about it. Talking about my mother needs to be on my terms. There is so much I can’t control with this disease and what it’s doing to my family; I have to seize control of this one little thing. I need to control when I think about it, how deep I go with those thoughts, and when I express how I feel about it. If you are a friend of mine, or a loved one, I already know you care. I’ve done a bang-up job of ditching the jerky people in my life, so I’m certain that the ones left are good people. You do not need to prove to me that you care about me, or my family, by asking about my mother. Because when I am not in that mental space to cope with questions, it feels like a sucker-punch to the gut. And most days, I am not in the mental space to cope with it. I think about my mother a lot. I think about my family a lot. I just don’t want to discuss her, or them, unless I feel like it.

Part of it is this: I know that she feels humiliated that she has this terrible disease. Even though she has done nothing to deserve it. Even though she can’t fix it. She is still embarrassed. And I want to honor her by not talking about her. This is incredibly ironic because my mother’s favorite pastime when she was well was talking about other people. I get that. Still, I am cut from a different cloth, and I think she deserves respect and privacy, as all people do, and I know she would be mortified if she knew that people wanted to discuss what her disease is doing to her.

Part of it is this: There is a never a good update with Alzheimer’s. There is no hope. There is no, “Well, we hope this new treatment will work.” No silver lining, no light at the end of that tunnel. Ever. So when I am asked again and again, “How is your mom doing?” it feels like, “Tell me what new symptoms she is exhibiting.” New symptoms are the only update there is to give. She isn’t something for others to casually review and discuss. I had a conversation with someone recently who refused to pick up on the clear signs I was sending that said, “I do not want to talk about this. Please stop asking me questions.” I had to get help from a bystander to get the conversation train switched to new rails. By the end of it, I was shaking and nauseated. My mother is not a freak show, and she doesn’t deserve to have her new symptoms cataloged in detail to others. This means the only thing I can say is, “Well, she continues to decline.” Which is always met with silence. The silence feels like, “Wow, that sucks for her” and it feels like, “Tell me more.” So let’s just avoid the awkward conversation that shreds my heart and makes me feel like throwing up.

I’m sorry this post is so intense. I don’t know how to make this funny. There are a lot of things I can make funny. This isn’t one of them. Alzheimer’s is where funny goes to die. There isn’t a lot of funny this week, for reasons no one else needs to know. I apologize, too, for being so contrary. Kind people mean well when they ask about my mother. My brain gets that. It’s my stupid heart and gut that refuse to cooperate. So please know that I know you care. Know that I appreciate your care and your love and your support. And know that when I want to talk, I will talk. Please let me initiate that conversation.

I know a man who, years ago, was diagnosed with something pretty crummy. I asked him shortly after how he was doing, and my question was loaded. It wasn’t the passing-by how are you doing. It was the heavily weighted, fraught with concern, “How are you doing?” He paused, and said, “Fine.” His voice was tight and the answer was clipped. So I asked him if he wanted me to ask him any more how he was doing. He said no, he didn’t. In fact, he didn’t want anyone to ask him. He said, “I don’t want to be known as ‘the guy with ____.’ I just want to be me. I don’t want to talk about it.” I will never forget that, and I think he is brilliant for figuring it out so quickly.

I’m not saying that this tactic the two of us take, the silent treatment, is right for everyone. Some people find great solace in open and frequent communication. To each his own. Whatever floats her boat. What I am saying is, don’t be afraid to ask someone what she wants and needs in the way of shows of support. You will be far more helpful if you give your friend exactly what she needs instead of what you think she needs.

Thanks for bearing with me. I promise I will try to bring the funny back. I miss it.