Context

As per tradition, my brother-in-law, Debate Dude, and his partner, Tea Dude, are here for Christmas with my Mother-in-law, Purple Lady. As should be obvious, Debate Dude and Tea Dude are gay.

Little Dude, who, as discussed before, is the most moral, ethical, and accepting person I’ve ever known, had a weird conversation with Debate Dude, which I only caught second hand. Apparently, Little Dude asked Debate Dude if he could call him “Gay Boy.” Debate Dude’s response was, as you might imagine, not positive. Debate Dude then said something along the lines of, “Sure, if I can call you ‘Fidget’.” Little Dude, believing in all things fair and having a sense that in family, love trumps all things so “Fidget” wouldn’t be mean, agreed, blowing Debate Dude’s plan to teach him a lesson.

I fear much of this was my fault, in an indirect way. In our house, we are so open about things which others find offensive, and please hear me loud and clear when I scream that homosexuality should never be offensive to anyone even though assholes find it so, that I think Little Dude assumed he could go anywhere and say anything to his Uncle(s). He didn’t imagine that Debate Dude would compare “Gay Boy” to the “N Word”. Here, at home, I call my bipolar self batshit crazy all the time. We talk about being godless heathens in our atheism. I will absolutely grant that we never make fun of Little Dude’s Tourette’s, but we do play with his ADHD, his sister’s social anxiety, Big Dude’s anger issues. I’ve always felt that getting these things out on the table at home, in an environment of love and acceptance, provides a sort of armor against a world that can be merciless. We are not hateful with each other, we are loving and kind and teasing in the way that only cohesive and healthy families can be.

So when Little Dude hit Debate Dude with “Gay Boy,” he didn’t mean to be nasty with a vile slur. Debate Dude doesn’t understand our little family’s circle of trust and Little Dude didn’t understand Debate Dude’s complicated history and present life. Context, as they say, is everything.

Silver Linings

Over the past couple of days, I’ve received my brother, Cool Dude’s, report on his visit with Mom and Blue Man. His verdict on Mom, that she is unable to care for herself, was not very interesting or surprising, though satisfyingly vindicating. Let’s be clear that I wish I were wrong, but the facts are the facts and having him see her first hand, witness what I’ve been saying, understand and regurgitate my verdict was a relief and the sort of, “See? I told you so,” that siblings often need.

What was very interesting and in some ways surprising were his conversations with Blue Man and the conclusions reached. Blue Man and I have had a very complicated relationship through the years and I won’t go into that now. Suffice it to say that Mom’s illness is bringing us back together and we are finding ourselves allies, becoming friends. Yet I don’t talk to him about the big stuff unless he brings it up. He has a temper and I am unwilling to rouse it. My brother, however, can have desperately needed discussions with Blue Man without poking the dragon. I think part of it is a male thing as my Aunts drive Blue Man insane, too. That’s neither here nor there, though.

Through the brief times Blue Man and I have discussed Mom, when he has brought it up, he has said she is doing well, her only issue being confusion over dates and times and a problem operating the microwave. With my brother, however, he went into much more depth, revealing a lack of denial in which I was afraid he was living. This is all very good news. The question is what he will do about it. Will he work to get them moved out of their huge house and into the retirement facility where they put money down years ago? The very nice place they chose to spend the last years of their lives? The place with a well appointed memory unit? Or will he continue to let Mom call the shots and have the process drag on to a crisis point at which we may have to take over?

Mom is having knee surgery in January, something I believe she needs, as I am fully behind the idea of quality over quantity in end of life scenarios, but something which I’m almost certain will worsen her Alzheimer’s. I hope that Blue Man is ready to deal with further decline and take stronger action in moving if the worse case scenario happens, if she becomes too bewildered to be of much help in the decision making process for things from what to do with the china to where to place the couch in the new place.

I’ve never been very good at silver linings, I will admit. But if there is one here it is that my brother and I are communicating and working together. We have never been very close, the twelve year age gap making me always feel closer to my cousins than to him. I think my roles as the younger sibling and the sister have always made me yearn for a closer relationship while his life as a well-respected academic, with no kids, who travels all over the world with people telling him how awesome he is has left little room nor need for a kid sister. Now, however, we are coming together, as I think so often happens, to care for our Mother and I am thankful for whatever relationship we are forging. I am also thankful that Blue Man and I are repairing our relationship, however tenuous, and that my Aunts and I are growing closer through this process. Having a parent with Alzheimer’s is unbelievably difficult. In the middle of the pain and grief, however, some good things can come.

Approximations

A couple of months back, Little Dude got this dragon cake pan from Think Geek. I can’t remember the circumstances, some Black Friday deal, I think, but as the ins and outs of making a tasty cake without frosting were daunting to this not-so-great-baker, we had yet to use it. But last night, I had an epiphany.  I could use my rum cake recipe, with which I make our annual Christmas morning breakfast (hey, you booze your way and we’ll booze ours) to make one cool dragon!

So this morning, up at 4:30 to start cleaning and baking, I made two rum cakes: one the traditional bundt with cherries and pecans on top and one with Dude’s dragon pan. I was so excited to do something *so fucking cool* for him on Christmas Eve! I pulled it out of the oven, inverted it, and …….. well god dammit, it looked like a blob. After much consideration, I have decided this was my fault (duh). I layered the bottom of the pan with butter and brown sugar, as I always do with rum cake, and I’m sure the brown sugar took away the fine detail of scales and wings and other features, leaving only hints at what the cake might have looked like. In the end, Little Dude sort of grunted in the general direction of the cake and went straight for the banana bread, anyway. Figures. At least Sweet Girl liked it. I think it’s half gone already.

As I sit here having my I-got-all-my-cleaning-done-three-hours-before-company-gets-here beer, I’m reflecting on the cake and thinking about how it’s such a great metaphor for my Mom right now. She’s been calling me several times a day, using me much like that brown sugar, as a buffer, not between batter and a pan, but between her and my brother. I’m much more comfortable for her. I make her feel more grounded. Whereas my brother, who is visiting with her, makes her feel more unstable, more confused, more like she really has Alzheimer’s. He escapes her crazy by running errands; he must have been to the grocery store four times each day. And each time he goes, she calls me.

Mom has always been the strong one, the social butterfly, the family rock, the Matriarch. And now, she’s going squidgy on the edges, needing support and reassurance and a touchstone. Just as my mistake made the dragon an approximation of itself, so the Alzheimer’s is making my Mother an approximation of herself. For now, I’m actually thankful for the approximation, for one day I won’t even have that. At least she calls, at least she needs me, at least I know, for now, that she loves me and those are the lifelines I will cling to.

In our atheist house, we still say Merry Christmas, though we acknowledge that we really  celebrate the Orgy of Greed. Whatever you celebrate, may I say Happy Holidays, from now until next December 24.

 

Rum Cake

  1. 1 Yellow Cake Mix (I like Duncan Hines, but whatev)
  2. 1 box instant vanilla pudding (the small one)
  3. 1/2 cup each cold water, vegetable oil, rum
  4. 4 eggs
  5. 1 stick of butter
  6. 8 or so maraschino cherries
  7. 1/2ish cup light brown sugar
  8. 8 or so pecan halves

Pre-heat oven to 350 degrees F. Cut up the stick of butter into smaller pieces, put in a bundt pan, and put the pan in the oven until the butter melts. When the butter has melted (fiveish minutes), take the pan out. Place one pecan, flat side up, in each of the larger wells in the pan. Place a maraschino cherry in the smaller wells so that the pattern alternates, pecan / cherry / pecan / cherry / etc. ALTERNATELY … if you don’t like cherries (even though they’re pretty for Christmas), just sprinkle chopped pecans all over. Carefully sprinkle a half a cup or so of brown sugar on top of cherries and pecans. This is the glaze that will hold them in place. I’ll use as much as a cup if it seems like I need it. If you’re using chopped pecans, just use 1/2 cup.

Mix all cake ingredients, cake mix – eggs, until well blended. Carefully pour over nuts and cherries. Bake in pre-heated oven for 45 minutes to an hour until toothpick comes out clean. Invert onto plate immediately. Serve warm or cool. Store at room temperature.

 

The Tip of the Iceberg

I don’t sleep. That is, if I don’t take sleep meds, I don’t sleep. It’s a bipolar thing, mainly, though right now, it’s also a stress thing. When I wake, my jaw hurts from grinding my teeth. Stress will do that.

Little Dude doesn’t sleep, either. It’s a Tourette’s thing. And an ADHD thing. His body won’t wind down enough for rest. Imagine trying to sleep while hyped up on caffeine and thrashing around. That’s sort of how it is for him. I should say he doesn’t sleep without meds. The drug Remeron is a wonderful thing for him and we wouldn’t be without it.

Remeron is supposed to make him eat, too, but we don’t get that side benefit. Everything else he’s on makes him lose his appetite so he’s nearing five feet tall and still not crossing the seventy-five pound mark. Walking around, I can see his ribs. When he stretches, I can see his spine. Even if the meds didn’t take his appetite and he actually ate, the constant movement from his Tourette’s would work off every calorie he took in.

And yet he’s thriving. He’s grown a half an inch since October. I worry; I’m constantly on him to eat. But he’s staying over the 14% BMI threshold that his doctor wants to see.

This is one of those things no one knows about Tourette’s. People see the outlandish movements, they hear the sounds. They don’t understand the crisis that weight gain can be when someone is constantly moving. It reminds me of Michael J. Fox when he lost so much weight after his Parkinson’s developed. My son went from a chubby cheeked, baby fat holding on boy to this desperately thin, bone showing kid in no time.

I guess the lesson is that it’s never just the overt things. When we see someone with Tourette’s or Parkinson’s or Alzheimer’s, like my Mom, it’s never just what we see. Those families are dealing with issues twelve deep. The weight issue is just one of twenty we have on our plates with Little Dude, but the only thing you’d notice is the twitching, the noise, the odd behavior. As caretakers, we need to be patient with ourselves and do the best we can for our loved ones. As outsiders, we need to give families room and understanding, knowing that whatever we see is just the tip of the iceberg. On behalf of one of those families, I thank you in advance.

Perspectives

As we get closer to Christmas and my Mother by turns frustrates me, makes me angry, and amuses me with her forgetfulness, confusion, and personality shift from sweet Southern lady to downright bitch sometimes, it seems everyone has his or her own perspective on how I should deal with her.

Big Dude wants to solve every problem. This is who he is and I have to respect that. He’s very type A, a former Navy pilot, and a fixer by nature and training. He gives advice problem by problem on how to lessen the burden on Mom and on me. I love him for it, but sometimes it makes me want to throw dishes at his head. Sometimes I just want him to listen and sympathize. There are no answers to this, I think, save patience and maybe a bottle of wine.

Cool Dude, my brother, wants to me cut her off at the pass. He wants me to tell her that we’ve already talked about things, but to me, that still leaves her without answers. It’s not her fault she doesn’t remember. He wants me to tell her, when she’s being a bit nasty, that I won’t listen until she can be nice. This I understand. And yet I feel like I owe her for all of the years she’s dealt with my bipolar disorder. He gets that, he does. But he and Mom have a different relationship, one in which he could say to her, “Back the fuck off, Mom, you’re being a bitch,” and she would. Because she thinks if she makes him mad, he’ll disappear. He’s spent so many years barely present in her life while I’ve been there, almost every day.

My daughter’s therapist, whose own Mother has dementia, suggests I take the, “That’s interesting, Mom” approach when listening to my own Mother talk. I actually did this yesterday when Mom told me that they had put up their Christmas tree the day before. The tree’s been up for a good ten days to two weeks. “Oh, nice Mom, that’s cool.” So I changed the language a bit, but the spirit was there. I think this one could work.

I think one lesson is that I’ll have to find my own way, maybe drawing pieces from everyone’s advice and maybe just forging my own path. But I find myself needing to vent, especially when I get so frustrated by things Mom and I have gone over a million times and that she still gets confused about. I know in those moments people will still offer advice.

Another lesson here is that I need to do more listening and less advice giving. When friends vent about their marriages or kids or their own parents, I need to just sit and listen and be with them in that space more. I admit I’m a fixer, too, but maybe I need to ask if they want advice before I jump in with it. Maybe I’m as guilty as Big Dude and Cool Dude of offering solutions when an ear and shoulder are really all that’re needed.

Purple Lady, Big Dude’s Mom, is headed here in a couple of days to spend the Holiday. She’s a retired social worker and not shy about giving advice, though in the most passive aggressive way possible.  I bought four bottles of wine yesterday. I might need more. Donations welcome.

Room to be Angry

For a couple of weeks now, my Mother and I have been discussing two gifts from Sephora that I sent to her house, one for her and one for my brother’s girlfriend, whom I call Canada Girl. Each gift was wrapped identically, in Sephora gift boxes, black and gold striped beauties that each came with gift cards, in separate shipments about a week apart.

Let me be clear that Mom’s confusion over which gift belonged to whom was probably my fault. I should have known better than sending two gifts wrapped identically when she is getting more and more confused about things. It didn’t occur to me, honestly, that with gift cards included, the question of ownership would be such a difficult one. I could not have been more wrong.

Mother has questioned me almost daily about these boxes. We have talked on the phone, texted, and emailed about this issue. I finally sent her an extremely detailed email explaining how to determine which box belonged to her and which to Canada Girl. Finally, on the phone yesterday, I lost my cool when she told me that she had opened each box. Her excuse was that the gift cards were inside the boxes. This is not the way Sephora (or any other company) does things. At some point, she must have done this herself to try and keep the gifts straight and then forgotten. The end result is that she has opened one of her Christmas presents and with that news, my frustration boiled over.

I didn’t yell at Mom, I didn’t cuss, but she could clearly tell that I was frustrated. She could plainly hear the impatience and annoyance in my voice. I was simply maxed out. And then, then, she asked if she should wrap the gifts because the boxes, while beautiful, were black and gold, colors she clearly doesn’t associate with Christmas. I had to get off the phone and fairly abruptly ended the conversation.

About thirty minutes later, I got an email from Mom. She apologized for her confusion over the Estee Lauder boxes, which only made my frustration worse. She then asked if she should have Canada girl take her box home, leave it at Mom’s, or toss it. I immediately called my brother and left him a message telling him that I really don’t care what Canada Girl does with the box; she can do a ritualistic burning in the backyard for all I care. I’m just over it.

I’ve said before that I always judged people who got angry with their loved ones with Alzheimer’s, but that now I completely understand. I also realize that the healthy thing is to give myself room to be angry. But it’s a hard thing to do. I feel traitorous. I feel ungrateful for all the years Mom has borne my own mental illness with patience and grace. I feel like the worst daughter, unable to repay her years of steadfast love, knowing this will only get worse.

Escapism

I’m a prolific reader, frequently downing a book a day. Reading is for me, like many people, an escape. That’s not entirely true, of course. I read to educate myself, to grow as a person. But the older I get and the more stressful my life becomes, the more I find myself reading, well, crap simply to escape for a bit.

To that end, here are some of my top reads for the year, linked to GoodReads, divided by category. If you read any, let me know what you thought.

Actual, honest to goodness literature:

  1. Good Omens: The Nice and Accurate Prophecies of Agnes Nutter, Witch by Terry Pratchett and Neil Gaiman. Anything with Gaiman’s name attached is something I’m almost guaranteed to love. Good and evil team up in this one to stop the coming of the Antichrist. It’s funny, irreverent, and incredibly well done. Shocking.
  2. The Storied Life of A.J. Fikry by Gabrielle Zevin This book was all over the place this year, in recommendations right, left, and yonder. And for good reason, I think. A man coming to terms with the loss of his wife and getting the greatest return in the bargain.
  3. The Things They Carried by Tim O’Brien I don’t know where I’ve been, but it took me a while to find this book, which I later found out is required reading in some places in high school English classes. It is and it isn’t about the Vietnam war. It’s about the boys who went and the men who remember it. It’s about the letters, the boots, the shovels, the malaria tablets they carried with them and the memories they brought back. I am not a fan of the war genre, but I deeply, deeply loved this book.

Non Fiction:

  1. Now I Know Who My Comrades Are: An On-The-Ground Look at the Lives of Internet Activists in China, Cuba and Russia  When I went to buy Emma Sky’s book The Unraveling: High Hopes and Missed Opportunities in Iraq (which, incidentally, I still haven’t read), I somehow ended up with Parker’s book. Don’t ask me how, but I’m glad I did. This is an in depth and very interesting look at how people living under authoritarian governments manage to coalesce into a resistance, one internet user at a time.
  2. Kitchen Confidential: Adventures in the Culinary Underbelly So this is more a selfish pick than huge literary recommendation, but I love Anthony Bourdain, whose autobio this is, and so I loved this book. Not only is it his story, but it’s an interesting, and sometimes frightening, look at what happens behind the scenes in restaurant kitchens. If you like his shows, you’ll like this book; it has the same tenor.
  3. Wheelmen: Lance Armstrong, the Tour de France, and the Greatest Sports Conspiracy Ever by Reed Albergotti  I’d always been interested in what the truth of the Lance Armstrong case was and I think I’m much closer now to knowing, though I’m not sure anyone will ever actually know. This book was truly eye opening, though. I lost whatever respect I might have had left for Lance Armstrong and gained some for people surrounding him.

Bonus: An Anthropologist on Mars: Seven Paradoxical Tales by Oliver Sacks Like all of the late Dr. Sacks’ books, this one is entertaining, educational, and heart wrenching. I’ve read almost all of his books, but this was of particular interest because of the tale of Dr. Morton Doran, a surgeon with Tourette Syndrome.

Young Adult:

  1. The Breathing series by Rebecca Donovan. Look, this isn’t great literature, but it’s a good story of a girl living in an abusive home and the boy who falls in love with her and saves her. The story is told over three books. It’s intense at times and not everyone’s cup of tea, but I enjoyed the series. I’ve linked the first book, Reason to Breathe.
  2. Nocte (Nocte Trilogy #1) by Courtney Cole This book has a twist you will *never* see coming. The main character is Calla, who lives in a funeral home with her mortician father and her twin brother, Finn, and the neighbor, Dare, in a small house on the property. And that’s really about all I can say about that. Except you won’t regret reading it.
  3. Aristotle and Dante Discover the Secrets of the Universe by Benjamin Alire Saenz  With a 12 year old son, I’m always on the look out for books with male protagonists and this one has two. It deals with some grown up themes, but is essentially about two boys figuring out who they are, what friendship is about, and the power of family.

Other:

  1. The Providence series by Jamie McGuire. This goes in the “New Adult” category, which kinda makes me crazy as it’s so undefined. But. This is sort of paranormal, sort of YA (though on the college end), and quite romance. I loved this whole series. Good beach reading. I linked the first book.
  2. The Air He Breathes by Brittainy C. Cherry (Romance) Two people dealing with loss. He’s so angry the world stays away. She’s a single Mom trying to put her world back together. It’s a touching story of two people helping each other become whole again.
  3. Twisted by Andrew Kaufman This is listed in the Horror genre, but I think it’s a psychological thriller. Dr. Christopher Kellan is the main character, working at Loveland Psychiatric Hospital. Life is fine until he gets his most difficult patient ever: Donny Ray Smith, accused of murdering 10 little girls and making their bodies disappear. Where this book goes will either blow your mind or make you want to throw the book across the room.

5 Books I Wish I Had Read This Year:

  1. Between The World and Me by Ta-Nehisi Coates
  2. On The Move: A Life by Oliver Sacks (I even own it!)
  3. The Heart Goes Last by Margaret Atwood
  4. Welcome to Night Vale by Joseph Fink, Jeffrey Cranor
  5. H is for Hawk by Helen MacDonald