“It seems like it’s been quieter for the past few weeks,” my friend Sam said over lunch last week. It’s actually been very loud, at least in my head. It’s a lot to sort out, to create a narrative. So bear with me while I download 10,000 thoughts in one post, without much aplomb.
“It’s amazing how much of medicine takes the scorched earth policy,” I said to Mark a week ago. “Radiation, chemo, antibiotics…” “True,” he replied. Mark has started on a scorched-earth antibiotic regime. Lab work answered the burning question of why he has chronic diarrhea. C. diff, or Clostridioides difficile, is a bacteria that loves to live in your gut while you would love for it not to live there. While our bodies are home to a complex, robust and friendly microbiome working in partnership with our cells to keeps us alive and functioning, C. diff is an unwelcomed foe. It’s simply trying to survive and reproduce, like all living things, except in this case its effort to extract resources includes producing toxins that kill cells in your intestinal lining.
It’s an ugly story, people. C. diff is a fecal spreader that loves hospital and nursing home environments (there’s a reason your doctors mechanically wash their hands before touching you), meaning Mark must have picked it up in the hospital from a poor handwasher. C. diff, that clever little bugger, is resistant to hand-sanitizer so soap and water is the key. Mark, being cognitively not at his best, isn’t in a great position to remember that anything he touches, if he’s not washed his hands like a surgeon getting ready to operate, could leave some C. diff on surfaces. It’s a little like managing a household pandemic. The hand towels in the kitchen and bathroom are gone, replaced with paper towels. I’m cleaning the surfaces Mark touches with a bleach solution throughout the day. The boys have been warned in graphic detail about how C. diff spreads, and what they can enjoy experiencing if they don’t take it seriously.
You know how I like to find the good news in things, because it keeps me from curling up in the fetal position and giving up? For this one, it actually wasn’t difficult. While C. diff can be deadly, I’m not too worried about that, because Mark’s had chronic diarrhea since April. The chronic diarrhea is surely a contributor to Mark maintaining at a svelte 131 lbs. So while this diagnosis is not awesome (C. diff has a reputation for a reason), if Mark can clear this infection then it could lead to him gaining back more strength.
Now eight weeks post-surgery, the incisions and drain sites on Mark’s head have mostly healed. He’s been worrying it for weeks. “Mark, LET IT GO…LET IT GO….” I tried singing, as gentle reminders and pleas have had no effect on him. “Stop singing that,” he said. Okay. The spot on his forehead that had opened up prior to surgery was red and scabbed again last week, after having healed nicely for a few days. “What happened?” I asked. “I tried to pop it, because one of the doctors said it was a pimple and that’s what I should do.” Yoi.
Mark has repeatedly fussed at the neck incision. “Am I waiting for this to open up, or close up?” Mark asked me one morning. I try to get inside his mind to figure out this train of thought. “It’s scar tissue you are feeling,” I said. “Something’s in there and it’s supposed to come out,” he countered. “No, nothing’s in there that needs to come out,” I tried to explain. I told him, again, that his thigh muscle was used to repair his head, and that they connected it to veins in his neck. “MY THIGH IS IN MY NECK?” he said, alarmed. “Um, yes?” I said. “I wish you hadn’t told me that!” he exclaimed. “I didn’t think you didn’t know?” I said, thinking, YOU’VE BEEN TOLD THIS 40 TIMES. Oh well. Michael reported that he was picking at his neck again today. “Dad said picking at it will help it heal,” Michael said, with a half bewildered, have bemused expression.
On Monday, I had a caregiver for Mark and was determined to do my darndest to take care of me. I wanted to go to a beach, and the closest one is a state park about 50 minutes away. I donned my suit, took a book and some water, listened to affirming music on the drive, and spent a lovely hour and a half reading and people-watching. After I got home and said goodbye to the caregiver, I sat down on Mark’s right side. And immediately saw a bloody gouge at his right temple, where the skin graft was placed. “Mark, what happened?!” I was afraid he’d picked off the skin graft, the wound was so horrendous. I searched the trash cans. Bloody tissues, scabs, hair — no skin graft. I called the nurse. Mark started talking gibberish into the air. “Mark, are you okay!?” He looked at my blankly and kept saying random words. The nurse came over. The graft was still there, it was likely infected, she called the surgeon.
Mark’s head is now wrapped like he’s a wounded soldier from the Civil War. He’s on another antibiotic. I clean and rewrap his head twice a day. The word salad moment — I don’t know what that was. A seizure? It passed. I can’t do anything other than let it go.
I lay on the couch for most of Tuesday and Wednesday in a post-Mark-bad-behavior stupor. I rewatched the Nest feed from Monday. I was gone from 1-5 pm, and Mark started his head destruction project within the first hour. He was reading while he absent-mindedly picked. Sometimes he was lying down, so his slight hand movements were not visible to the caregiver sitting at the dining room table. A few times the boys walked through and talked to Mark, from his right side. The Nest feed showed Mark tossing pieces of his head over the railing behind the couch. He picks at his healing scalp wounds often (incisions and drain sites). This is the first time he’s really done significant damage, other than the occasional picking off a scab before it’s ready. The caregiver and boys didn’t noticed that he was making substantial destructive progress. I don’t blame them, although I do wish they’d have noticed. It is what it is. He’s hard to take care of. He does surprising things. He’s a danger to himself.
Next on the medical docket, in addition to the usual spate of post-surgery therapies and follow-up appointments, Mark’s epileptologist has decided that Mark has “intractable epilepsy,” which simply means that despite the significant drug load being used to fight his brain’s propensity for seizing, it’s doing it anyway. Two medications + breakthrough seizures = intractable epilepsy. “Every seizure is a danger, not only for falls and damage to your brain, but they can even stop your heart,” she said helpfully during Mark’s recent telemedicine appointment. “I’d like to bring Mark in for a three to seven day inpatient stay. We’ll reduce his medications while he’s under strict supervision, and then track his brain as it seizes. Then our epilepsy team will review the data and make recommendations. We’ll take it one step at a time. There could be functional MRIs and PET scans. There’s a chance we may want to do a surgery to remove the part of the brain that is causing the seizures. It’s not dangerous, because that part of the brain isn’t working, anyway.”
I quickly captured and stored her statements, locking them away in one of my many brain compartments. The only thing I kept out was that I know I am waiting for a phone call to plan the inpatient stay.
One thing at a time.
“How did it go,” I asked Matthew over the weekend, after he had watched his dad for an hour so I could run errands. “Pretty good, except he was kinda rude,” he said evenly. “Rude! What happened?” I asked. “He wanted to go outside to cut kindling, and when I tried to help him he kept telling me I was doing it wrong. He told me I was doing a terrible job and was no help. When I did something he thought was right, and he said, ‘Well you’ve finally been SOME help.” I know what this activity was about. Mark’s been perseverating over the dried flower arrangements over the past year. Occasionally he takes one, carefully wraps it in newspaper, and puts it in a big blue Ikea bag that sits on our living room floor for this purpose. He calls this kindling. Why he wanted to chop it up smaller is beyond me.
I took a long look at Matthew, a golden child who is unfailingly kind, courteous, and thoughtful. No emotion, no expression. Learned from the best. “It’s not personal. Don’t take it personally,” I said. “I’m not,” he said.
I asked Mark about what happened. “He wouldn’t listen! He didn’t do anything I asked! He didn’t do anything right!” Mark complained. “Well, perhaps because this was a new task, he didn’t understand what to do. Next time, he can do better,” I tried. “That’s not it,” Mark said. “He wasn’t being obedient. None of the boys are being obedient!” This was new, Mark using the word “obedient.” Mark, as a person, has never been what I’d call “obedient.” He’s more of a strict individualist who believes everyone has the right to be whatever they want, within the boundaries of kindness and common courtesy. This was not Old Mark talking, this was New Mark. The black-and-white thinking is brain injury talking. I tread very carefully, trying to understand and navigate Mark’s logic and emotions while achieving an outcome that would ultimately be helpful to the boys. “As kids get older, I think it’s natural for them to become less obedient. As they stretch their wings, it means they have to do their own thinking and deciding what’s right.” I was making things up and seeing if I got anywhere. “I don’t like it,” he said.
I know the boys have learned not to trust Mark’s words, not to put too much meaning on them, not to follow his direction, not to listen to any fatherly wisdom he tries to impart. Matthew, after his first week of being a summer camp counselor, was telling Michael, Mark and me about a particularly nebby 1st grader who’d gotten into several fights. Mark held up a fist and said, “Give the kid a racetrack.” The boys and I cracked up at Mark’s completely sincere and terrible advice. Sometimes the safety valve of laughter is all we have when the great loss of Old Mark being subsumed by New Mark is so vividly clear.
“How are you experiencing your dad now, compared to what he was like before all this?” I had asked Michael a few days earlier. “He’s really different,” Michael said. “Sometimes I get glimpses of what he was like, but mostly he seems like a grumpy old man.” We talked about how strange it is that we can lose track of what someone was like before, when things change so much. “I remember that your dad used to walk around the house singing all the time,” I said “Yeah, I remember that too,” Michael said. “I used to find it kind of annoying,” I said. Michael laughed. “Now, I miss it.”
Mark’s Mood Management
Needing to have Mark not cause caregivers to bolt and the children to be traumatized any more than they must be, I decided to try giving Mark CBD. The early-dementia caregiver community feels it can be beneficial as a mood-stabilizer. When my organically-grown, Pennsylvania-local CBD products arrived in jelly and tincture forms, I followed the directions and let a jelly dissolve in my mouth. It tasted subtly of earth and hemp rolled in sugar; not great, not bad. I gave Mark daily sublingual tincture each day for a week. His moods seemed to fluctuate independent of this little CBD experiment. I’m not giving up on it; perhaps it does a little something, so I still give it to Mark on caregiver days. And it was a worthy experiment if for nothing other than this: Mark’s oldest kid, Michael, who is the most risk-averse guy I have ever known, stumbled upon the jellies and, thinking they were candy, ate one. “What are these candies? They taste a little strange,” he asked. I snorted, delighted. “You just had your first CBD!” Michael, whose actual plan is to never have a single drink of alcohol in his entire life, looked alarmed. And later reported no effect on him, either.
Public Sphere Management
Mark is not unaware that his head looks a little squished. He’s not one to talk about it, but I know he sees it, feels it, and thinks about it. He does not always understand it. Sometimes he thinks he’s waiting for plastic surgery to fix it up. He’s not — the doctors and I are in agreement that nothing other than functional surgeries make sense in Mark’s situation. When I take Mark to the hospital for appointments, people stare. A lot of people stare. This started back when he looked like the guy-you-don’t-want-to-be during his radiation and chemo. He aged about 30 years in the course of three months, and by the time he was finishing the treatment, he looked more dead than alive. I watched people sneak glances as he slowly pulled his IV pole across the waiting room, as he was wheeled from chemo to examination rooms. It was a curious thing. I’d never been in a situation where I had to navigate staring, even if the object of the staring was by association. The farther away from chemo and radiation Mark got, the healthier he looked. And then the sawing away at his head began, and now no one could look at him and think he’s a normal dude.
“What’s it like to be in the neurosurgery waiting room?” Kim once asked. Every person there, patient and caregiver, is in a bad way, and probably 100% of the people in that waiting room are some combination of terrified, hopeful, and hopeless. “Mark’s the one everyone stares at,” I said. Which is true. The guy no one wants to be. The person they norm themselves against, sitting their with their brain tumors and aneurysms and stroke histories, looking at his mashed up skull probably thinking, well crap, I hope that’s not ever me. Or, at least I’m not that guy.
On the way home from the hospital last week, we did our usual aim-for-the-highest-calories-possible trip through the Chick-Fil-A drive-through. In an impressive pandemic pivot, the entire way this drive-through works is optimized for efficiency. A bevy of black-and-red clad teenagers with iPads come to the passenger-side car windows, walk alongside as they urge you to keep inching forward, take your order and process your credit card. A young woman came to Mark’s window. Normally, I yell our order and hand my credit card across Mark, who sits silently. This time, I tried engaging him. “Can I take your order?” she said. “Mark, do you want to tell her your order?” I said loudly. She looked at me, looked at Mark, and her face softened and changed. She got a little friendlier, and she talked a little slower. Mark left a few things out that I knew he wanted. “Do you want lettuce and tomato on your sandwich, too?” I prompted. “I’ll have lettuce and tomato,” he told her. “Do you want to make that into a meal?” she said. “No,” he said. “Yes,” I corrected. “Do you want to give her your credit card?” I asked Mark. He gave her his credit card.
I realized quickly, during the little colorful overalls stage I’ve been in, that the bolder I go, the less Mark gets stared at. We also get showered with positive interactions from strangers, and who doesn’t want that? When you’re in the medical dumps like we are, you’d be surprised by how nice it is to have the valet, the Pitt university student, the stranger on the escalor, the barista, the cafeteria worker, shout out a “love those overalls!” and “you’re working it out!” and “where did you get those?!” Our lives are pretty cleanly stripped of fun, and so a trip to the hospital needs to be maximized. Pulling into valet, I get Mark into a wheelchair,and we parade through like The Odd Couple, me in clothes screaming loudly that life is joyous and good, and Mark riding silently along with a look that reminds everyone that life is difficult and we are right live it on the edge, all the time.
Mark’s in a wheelchair 100% of the time at home. Well, 98% of the time. Occasionally he forgets and gets up to walk. We now own four Nest cameras. There’s the one outside the front door that famously captured Mark returning to the house after escaping from his skilled nursing facility 18 months ago. There’s one in our bedroom, so Mark can lie down without being constantly shadowed by me. There’s one in the kitchen, so when Mark wheels himself in there I can make sure he’s not up to no good. And there’s one in the living room, where Mark spends the majority of his days, sitting or lying on the couch, doing pretty much nothing.
Two weeks ago, with a caregiver onboard for four hours, I took a long hike and then went to the Little Eagle, bought a sandwich, and sat down to do some work. On a whim, I decided to check the Nest feed on my cellphone. I saw Mark’s wheelchair in the living room, but no Mark. I called the caregiver. “Where’s Mark?” I asked. Oh, he must be in the bathroom, she said. “He’s not supposed to be walking, at all, without someone right next to him,” I said. While he can walk, he cannot walk safely. He cannot control his knee yet, leaving him at a high risk for falling, which is why his choices are the wheelchair or supervised with the walker.”He’s been wheeling himself in and out of the bathroom over and over again today,” she said. “He must have just gotten up… Mark? Mark?” I listened to her go throughout the house, her voice inching up in volume and stress. “I don’t know where he could have gotten to!” she cried, alarmed. “There’s only so many places,” I said. “Oh! Oh!” she exclaimed. “He’s out in the street!” I said I was coming home immediately and hung up the phone. The Little Eagle is less than two miles down the road, and when I pulled onto the street, there was Mark walking along, with Michael and the puppy on one side and the caregiver on the other. Mark was yelling at the caregiver,”It’s not about you!” as she fretted alongside him. When we got back to the house, Mark laid down on the couch. “Oh Diane,” the caregiver cried, “this has never happened to me before! I’ve never lost someone!” It’s okay, I told her over and over, Mark’s really hard to watch. “You can fire me if you want,” she said. I gave her a hug instead.
“Do you ever get bored?” I ask Mark. “Yes,” he says. “Do you mind being bored?” No, he says. The speech therapist tries to help Mark think of things he can do while he’s sitting.”The body just hits the point where it wants to bolt,” the speech therapist said a few days later, reflecting on Mark’s sudden decision to GET OUT OF THE HOUSE NOW and trying to figure out how to keep him occupied. “How about playing cards with the boys? Would you play games on an iPad? Maybe sudoku?” Mark says maybe to some, no to others, and overall it doesn’t matter. The part of Mark’s brain that is damaged is the part that controls initiative, impulse, spontaneity, and perseveration. Mark doesn’t take initiative much anymore. Conversationally or behaviorally. The problem, if the speech therapist’s theory is correct, is that some part of him will periodically snap into MUST DO SOMETHING NOW mode, which is a dangerous place for Mark’s mind and body to go to. I try to combat this by designing things to look forward to and do everyday. Each morning, I make Mark breakfast, prepare his pills, and sit with him as we write up the day’s events on a whiteboard. Mark puts the date, which he reads off a daily calendar I keep on the table. There’s places for him to check off that he’s taken his pills throughout the day, done his sinus rinses (which he almost never does), completed his exercises. I write down what time we will eat our meals, and in between those benchmarks, I add his OT, speech, PT, telemedicine, and hospital appointments. If that doesn’t seem like enough activity, and if he has capacity for more, I’ll help him plan something. On Sunday, we drove to the lake and watched people fish, and later on we watched one episode of “Lost.” Today, we went to Aldi. He pushed his walker around slowly while I rushed to get everything we needed. That’s enough for him for a day, and then he’s back to the couch.
I posted watch-out-for-my-husband alert on the community moms’ Facebook page. “He’s the guy who doesn’t look like he should be walking alone,” I said. One of my neighbors responded that since she lives up the hill, she didn’t think he’d make it up there. “Well if he does, turn him around and head him back down,” I said.
Old Mark drank a couple beers for pleasure. New Mark drinks white wine. He can’t reliably judge a number of important factors around this activity. Time, for example. “Hey Mark,” I’ll say, looking over at him sitting on the couch sipping, a glass of wine at 9:00am, “Do you know what time it is?” Or, “Hey Mark, that’s kind of a big pour,” when he’s filled an entire water glass with wine. I’ve developed several key strategies for trying to keep him safe as well as happy. I bought wine glasses with demarcations of 4oz, 6oz, and 8oz. That helps, sometimes. When I buy a box of wine, which is what Mark always requests, I take out the bag, decant half, and then hold the valve open under the faucet and fill it back up with water. I decant the wine into empty wine bottles and then top them off with water. Luckily, Mark’s senses of sight and taste are such that he hasn’t noticed.
The system is working against us. I think it works against almost all of us. Not in equal ways — in wildly different ways dependent on demographics — but looking at our particular situation, I am confronted by this: we work our whole lives to get by, get through, earn the money we need to take care of ourselves and our loved ones. And then in the end, the system works as hard as it can to take it all back. Mark and I are privileged within American systems, and Mark has never taken one financially irresponsible action in his entire life. And so the fact that I am feeling the pressure and fear of “can we make it” financially tells me alot about how screwed most Americans are at surviving life and, ironically, end-of-life care.
Mark has a pension, an unbelievable good fortune and a relic of a time gone by. He also has good health insurance, and without that, I am 100% confident that Mark would be dead. I’ve never added up the cost of Mark’s medical care, but I did recently get an explanation of benefits for his surgery in August 2020 (and there’s been two additional just as gigantic surgeries, if not more so, in 2021), and the surgery and inpatient costs exceeded $200,000. Now that Mark has retired and I am taking a sabbatical, our income is cut in half. I am NOT COMPLAINING; we were solidly middle class before, and we are simply less solidly middle class now. Our bills are higher, because while Mark has good healthcare, it’s not free of course. Premiums and deductibles and copays and prescriptions. Some of Mark’s medical equipment is paid for, and then there’s lots of little odds and ends that aren’t. Want to come try out the new neuromuscular electric stim unit I bought to help exercise Mark’s quad? I have that. Need an extra cervical neck brace? I have a spare.
Also, I need caregiving breaks. On one of the early Alzheimer’s forums, someone recently posted the question: What do people not understand about caregiving that you wish they would? I commented, “The when someone tells you they have to care for their loved one 24/7, they mean that literally.” I currently have 12 hours of caregivers watching Mark each week. That leaves 156 hours each week for the boys and I to watch Mark, because he has to be watched 24/7 and the average cost of caregiving in our market is $25/hr.
Having been on disability for two years, Mark will go on Medicare soon. That will cost more, as I maintain insurance for myself and the boys, and we pay the Medicare premiums. And Mark will need supplemental insurance to cover coverage gaps for his medical needs.
In trying to make sure I’m making optimal financial decisions, I’ve met with two elder law attorneys and a social worker. Mark has a 401K and I was wondering whether cashing out early would be at all worth considering. The answer is no. He’d take a 40-50% tax hit on the money. And once that money is all spent, Mark can never qualify for Medicaid anyway. In the state of Pennsylvania, your assets cannot exceed — and I am not joking — about $8000 for you to qualify. That means spending down your complete retirement. Additionally, your income cannot exceed $2400 monthly, and between Mark’s social security and pension, it does. This is relevant because it eliminates skilled nursing from our options, because without Medicaid to cover it, it would cost out-of-pocket $10-12K a month, which is an impossibility. Assisted living, at $7-9K a month, would only be possible if I cashed out Mark’s 401K at that massive tax hit. “Am I getting this right?” I asked the social worker. “Yes,” he said, lowering his voice. “It’s a terrible system. I think there will be a lot more assisted suicide in the future.”
Diane Mood Management
“It didn’t really phase me to hear that Mark has C. diff,” I said to Hilary. “It could have been a rabbit-hole situation of trying to figure out why he has chronic diarrhea. At least it was figured out quickly.” “Too blessed to be depressed!” Hilary laughed back. For sure. That silver-lining thing is really often there. Sometimes it’s lurking and harder to find, but it’s almost always there.
And yet. Climbing out of the mental hole I descended into with this last surgery of Mark’s is serious work. It’s taking effort and intentionality, and I’m doing better some days than others. Some days, I can see the joy in the little things again. The black and turquoise damselflies darting in front of me on the hiking path. The black raspberries ripening. The days Mark goes to sleep at 5:30pm, leaving me with an entire night to myself. The friends and family that have gone out of their way to visit. I can sometimes find the humor in things, like yesterday’s UPS delivery of the “Wound Welcome Kit” from the home healthcare company. Maybe at birth we should all get Wound Welcome Kits, I thought. There’s a temporal joy I can periodically feel come across me, like the gentlest of breezes on your skin. For fleeting moments, some days, I think, this is not a bad life.
Then there are the other days. The days that Mark is more out of it and I don’t know why. The days when hearing someone talk about going to a movie, or taking a vacation, or having a cookout with friends, feels like a crushingly sad mirror held up to my life. I try to remember to breathe. I try to get lost in watching the birds at the feeder, or Downton Abbey on Netflix.
I was talking to friends the other day about our kids. The world is complicated; can our kids be hopeful? “Well,” I said, “I want them to be hopeful if being hopeful is appropriate.” This is a good summary of why my life is very confusing and difficult right now. Mark’s head gouging event was very disturbing and alarming. I could not believe the damage he did to himself. This felt different than him deciding, unwisely, to take a walk. What am I hoping for? Is it appropriate to hope for anything?
I have found myself trying to find a settling-in place to orient to Mark. The friend, girlfriend, wife, caregiver, nurse. With the chaos of his illness, perhaps what I have to do is NOT find a settling-in place, but maintain fluid movement through the continuum. Perhaps I have to let go a tiny bit more of that sense of control that most of us have, that allows us to get to the next day, and the next, and the next, without utter terror of our mortality.
I continue to try to figure out the best way to help Mark. Mark the person, not Mark the patient. A few stories I’ve heard from friends and family recently rattle around in my mind. The 80 year old uncle who despite his multiple strokes, inability to walk, and constant diet of whiskey and cigarettes, still lives independently. The story about the 92 year old grandma who insists on living in her house, despite the occasional fall down the steps. Are there better ways for people like this to live? Are there safer ways? Well of course. But that’s not how these people are choosing to live. It’s their choice, and they choose this. Mark’s choice is to try to live while often working against it. Does it matter that his brain-choices are not always in cahoots with his lets-keep-living plan? I have thought that it has mattered. That I need to stick with the rational side of Mark’s brain. Now, I’m not so sure. Maybe my job is more safety net and less savior. Maybe it’s to say, okay, I’ll help you do that; I’ll not encourage that; I’ll clean up after that mistake. Maybe I have to have the strong shoulders and accept his risk that I’d not choose. Maybe that means the boys will have many more difficult experiences that they have to process, like Matthew hearing his dad be uncharacteristically cruel to him. Maybe that means one of us will find Mark, again, fallen and in need of rescue.
We work so very hard in our lives to control what we can. I had thought I’d made some good strides in letting much of that go. Maybe there’s more work to be done.
Yesterday we finally had some rain. Mark agreed to lay in bed with me. He curled up next to me. I felt overwhelmed and quiet tears came quickly. He patted my head, stroked my shoulder. Finally, he said quietly, “Are you sad because of the storm?” I’m okay, I said. It’s okay. I held his hand, and we fell asleep.