The Long Goodbye

Maybe I should have cooked only organic food, she thought for the millionth time. Maybe I could have insisted on a vegan diet. Maybe I should have suggested that fancy, expensive protein powder that got so famous for its incredible results. What if I had pitched a low-fat diet – or even a no-fat diet? One expert said the problem was a high fat diet along with heavy metals. He said what was needed was a specific, daily smoothie to remove the metals. Another expert wrote a book about how a high-fat, keto diet had healed a large percentage of the folks in her research group. What would have happened if she had let herself become the food police? She could have insisted, nagged, and bitched. Maybe if she had bitched enough, she could have gotten him to drink the same metal-removing smoothie every day for years. Or perhaps she could have forced a keto diet on him. She would have ruined their quality of life, but maybe it would have been worth it?

When her best friend, Kate, called to tell her about how Kate’s husband had to suddenly be rushed from his doctor’s office to the emergency room due to what turned out to be several large pulmonary embolisms and she asked if the doctor had advised him to change his diet, Kate said they hadn’t gotten that far in the process yet. Kate explained that he never drank water, drank loads of coffee, and ate a lot of fat. They put him on blood thinners.

“I know he’s not gonna like it when the doctor tells him to change his diet. I tell him all the time to drink water, but he says he doesn’t like the taste. A diet change is not gonna be easy for him, that’s for sure.”

They discussed it at length – Kate’s fears and worries, her anger at him for not listening to her advice. Mostly they discussed how very much she loved him and wanted him to stay alive.

“He could have died,” Kate whispered periodically throughout the call. She listened, wanting to help Kate process the fear and pain she’d been through, the changes that were most probably in their future. When they worked their way back to the diet changes, she pointed out that even though she understood Kate’s fears and the importance of a diet change, surely there was no way Kate wanted to turn into the food police and be one of those wives who is constantly monitoring and bitching about her husband’s food intake.

“You know the ones, right? They’re on guard all the time. You can’t even have a conversation with them, because they're too busy watching their husband from across a friend-populated backyard, ready to sprint across the grass to slap a barbecued rib out of their husband’s raised hand as he’s about to take a bite of it. All they do is nag and bitch and embarrass their husband in front of other people. It must be worse when they’re home alone.”

She had no doubt Kate would merge into that lane right behind her. Kate would agree about how ugly those women were, how rude, how out of line, how comical, how they must be ruining their own life as well as their husband’s. They’d go on to talk about what fools they were, how that behavior put them into the mom category instead of the wife category. Surely Kate would agree with her assessment. That type of behavior would leave only one recourse for the husband. He would sneak food when she wasn’t around.

“You damn right I’m gonna be the food police,” Kate informed her in that aggressive, stand-back-and-watch-me tone of voice she often used when stressed, “I’ve got to make sure he lives. I want him around for a good long time!” 

Kate wanted her man to live, so she was willing to become that woman. Does that mean I don’t want my man to live? Am I just lazy? Not brave enough? Am I too afraid of what others would think of me if I became that woman? Or maybe she was simply weary of the endless conversations inside her head about what was or was not the best thing to do, tired of the constant gyri and sulci of the situation in which she found herself.

It seems all she did back then was think. She knew she was an over thinker. But by the time she had that conversation with Kate, she had already thought herself into exhaustion and back numerous times. She had finally concluded that quality of life was more important than the quantity. She knew how stubborn and argumentative her man was. She knew he would become ever more so as his disease progressed. And she knew there was no way she’d ever convince him to do something he didn’t want to do.

She had also explored her guilt by that time. She felt guilt at not doing enough, not doing the right thing. What was the right thing, anyway? The answers to that question were varied and numerous – and often uninvited. Everyone she asked – or even anyone who found out about it – launched into their version of immediate changes that needed to be made. Everyone had their opinion. And it turned out that’s all they were. No one actually knew the right answer – not even the doctors. Her guilt was overwhelming at first, but after months of discussing, thinking, processing, whining, grieving, meditating, praying, crying, yelling, and being confused by it all; she finally wrestled guilt to the ground and looked it in the eye, staring it down. She guilted guilt into backing its ass down. Guilt blinked first and looked away, most likely ashamed of itself. Stay down, she thought angrily, as she got back up, feeling like Mohammed Ali standing over Sonny Liston.

Could she have been more kind, more patient, more forgiving, more understanding when presented once again with his incontinence, his irrational ideas from which she had to somehow distract him, his buying the same item time after time because he couldn’t remember he already had it? His angry accusations that she was having an affair behind his back (who had the time?!)? His arguing and contradicting every little thing she said? His same questions over and over and over and over and over and over and over and over?

The anger would surface, despite her best efforts to keep it buried and docile. Its head would poke up and out in the form of clenched teeth and fists, then quickly morph into tears of frustration. She often had to turn and walk out of the room, leaving him standing there watching her go (when he noticed her at all), and make herself close her eyes and breathe deeply. She blamed him. She cussed him. She took it personally, when she should have realized he couldn’t help it. It was not his fault. But she labeled him selfish, not very bright, lazy, passive aggressive, mean. The list was long. She turned away to hide her tears – tears of fear, sadness, embarrassment, frustration, anger, anxiety. But she needn’t have worried; he didn’t notice much. Not even obvious stuff. And considering her love language was quality time (attention), his inability to pay attention was devastating, even while a part of her routinely reminded the rest of her that it was not his fault.

“Every chance you get, you gotta let that anger and sadness out, girl,” her therapist advised her on a regular basis. “Otherwise, it’s gonna eat you alive.”

Her therapist was right, of course. But when she was elbow deep in runny shit, scraping it off his clothes and body and off of every surface in the bathroom for the third time of the day (and it was still only lunch time), trying not to puke, and listening to him once again yell angrily that it was her fault he shat his pants, it was hard to remember what was said in the quiet comfort of a therapist’s office. 

She was so very tired all the time. The constant vigilance was exhausting. The nonstop grief was body breaking. Her entire body was in constant pain from the anxiety and grief she carried. The times she got a few days away from him, she slept. It was all she was able to do. She had no energy to do anything else. Finally given a chance to not be on-call, her body and brain were able to express the fatigue, the exhaustion. At those times, she felt the need to move slowly, as if walking under water; a snail’s pace was all she could manage. She would eat, sleep, eat again, sleep again – the entire time she wasn’t with him. Then when they were together again, she put her hyper-vigilance armor back on in order to do their life. She would carefully rearrange her face to something neutral and pleasant. She picked her body up from its forward pitch, forcing her shoulder blades back. She moderated her tone of voice to a pleasant neutrality. She softened her body language. After all, he was in denial, so any sign she gave of displeasure or confusion only bought her a nasty, time-consuming (and futile) confrontation with him. The armor was a heavy necessity.

And then, of course, there was the pharmaceutical dilemma. Did they try enough medications? Should they have tried more? With most of them, the side effects were worse than the disease itself. At one point, he was on such an extensive cocktail of drugs, she began to wonder if they were creating more problems than they solved. And if nothing could cure, was prolonging really the best idea? Was it humane to withhold the prolonging drugs or cruel?  

Maybe she should have done more research that focused on a cure instead of focusing on how to provide the best care, instead of giving up and giving in and squatting there in the certainty of what she thought she already knew would happen – what the many professionals told her was inevitable. The research she did do told her nothing could change the course they were on. Not diet, not medications, nothing. But innovations happen all the time. Maybe I gave up too soon, she thought. Maybe his in-denial, pain-in-the-ass brother was right. Maybe instead of being so concerned about ruining his quality of life by being a constant bitch, I should have become that bitch.

Her research, though, contradicted that idea. The research told her it was a balancing act that had only one ending. You should try to balance all of it, the experts said: diet, exercise, mental stimulation, rest, sleep, activities. Don’t make life more difficult for either of you. Keep it as simple as possible. And make sure to take care of yourself first. There is already enough stress happening – for you both – there is no reason to add to it.

The pain-on-the-ass brother bombarded her with emails and texts (she had, by that time, stopped answering his numerous ‘urgent’ phone calls) containing links to sites where they guaranteed their very own specialized version of cure. The site could help, but only if she was willing to help herself and make the wise investment of purchasing their well-researched, peer-reviewed, time-tested program for only three payments of $1499 each. You can take their free test, the brother wrote, and it will tell you if their program will help or not. He took it, he added, and only tested average. But then, he explained in the email, he always was bad at taking tests.

Periodically, he sent long, rambling emails and texts explaining why she was not correct, how she was making it all up, and how she should stop acting like something was wrong when, clearly, nothing was. You should be focusing on a cure and not end-of-life, palliative care, he wrote. “Your mindset is neither optimistic or even hopeful for solutions. While your intentions may have been to show proof [not her intention at all] of his demise I found it more as a take down of his character and behavior,” he wrote about the problematic symptoms she and the neurologist had witnessed and that she had shared with him. Her intention had been to keep him informed about something important – and not good – happening to his brother.

Reading his messages was like trying to decipher a message from someone whose first language was not English (his was). The messages rambled, she could seldom figure out his point (or even if there was one), he used big words thrown in randomly, etc. When attempting to translate his emails into something she could maybe comprehend, she often felt more like an elementary teacher grading papers than a sister-in-law receiving an email from a grown-ass man with a master’s degree. She began to ignore him. His messages, and the decryption they required, took up too much of her time and energy. She had precious little of either to spare. He wreaked any sense of certainty she occasionally managed to get hold of. She even contemplated blocking him, but for some reason didn’t. But obviously he was doing his research. He never did give up. What if they had tried one of those expensive, online programs? The professionals told her not to waste her money. But how could she be sure?

And her? If she wasn’t spending all her time researching magical cures, what was she doing all day? She was busy making sure the pain-in-the-ass brother’s brother stayed safe, content, as anxiety-free as possible, well fed, well hydrated (must avoid the dreaded UTI), stimulated and social when he needed that and then isolated and well rested when it was necessary.

What she was doing sounded too easy and simple. No wonder the brother doesn’t take me seriously, she thought more than once. What I was doing day-to-day and minute-by-proverbial-minute is too easily book-ended into that one stupid sentence, she thought, feeling furious and defeated. How, then, was it a full-time job? Why was I completely exhausted the entire fucking time?

She tells herself now that she did the best she could. She repeats to herself all those gifts of fine words handed to her by her therapist and the wise, experienced ones in her support group. Stuff like, you can’t blame yourself. You’re only human. You did your research and you applied what you learned. You read books, you studied blog posts, you talked to neurologists and pulmonologists and geriatric psychiatrists and social workers and case managers and psychologists and neuropsychologists, you attended seminars, you went to support groups and used the knowledge you learned, you learned to be mindful and not take his behavior and words personally, you learned to be okay with telling therapeutic fibs, you learned how to manage the disease. You did the best you could; that’s all anyone can do.

Today, she is haunted equally by what she did and what she didn’t do. What she said and didn’t say. What she grieved then and is grieving now. She is haunted by the decisions she made and the ones she couldn’t make. She is haunted by what she might have done, what might have worked, and what she didn’t do that maybe could have made a bigger, better difference. She is haunted by the mental movie inside her head, the movie of his last few days of silent immobility.

That hant clings to her, sliding across her skin, too intimate for comfort, its hands on her shoulders, leaning in to whisper unholy secrets that impregnate her sleep with that same black hopelessness that held her hostage for years. As surely and as thoroughly as any long-lost, centuries-old ghost ever could; dementia continues to haunt her.