Life, Managed

“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.

Disease Management

“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.

Kid Management

“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.

Freedom Management

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.

Wine Management

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.

Finance Management

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.

Turning the Corner

Look who wanted to go out to dinner today. Yes, he chose going to the local grocery store a mile down the road, our little Giant Eagle. And he decided it was dinner time at 2:30 pm. When we came home, he took a nap. He just woke up and looked at the cable box. “4:56?!” he said. “What time did you think it would be?” I asked. “2:00 pm,” he said. So logic is not always prevailing. But Mark, my Mark, is a little bit more here than he was yesterday, and a little bit more here than the day before that.

For weeks, I’ve felt like I’m sliding across ice, looking for anything to grab hold of.

I think I found it.

Recovery

In between appointments, we rest. Sometimes, instead of eating dinner, we rest. Often, instead of washing the dishes or folding the laundry, we rest. In the last 10 months, Mark has had four surgeries that were all cranio-somethings and included ear to ear incisions. He’s had his skull base reconstructed. He’s had part of his skull removed. He’s had a thigh muscle transplanted from spot A to spot B. He’s had to recover over and over again. Regain strength. Sustain a will to do so.

This afternoon, we watched the next episode of “Lost.” Jack, the main character whose hero status hides a deep cavern of insecurity, trips and ends up plummeting over a cliff. At the last second, he grabs a root and dangles over the edge. “I don’t think he falls,” Mark turned to me to say. “I think he finds the strength within himself to pull himself back up.” The scene played on. John Locke is suddenly there, lying on his stomach, reaching to grab Jack’s hand. Together, Jack scrambling and clawing, and John straining and pulling, Jack makes it back to the top.

Sometimes struggle is loud. Sometimes, it is very, very quiet.

This week was better. In between the struggling, we rested.

Unanswered Questions

It has not been a good week. The transition of Mark from the hospital to home has been rough. How we find the energy to get through each day is unclear. How we get logistically get through each day is unclear. Like gadgets running on a tangled mess of power cords, my reality and Mark’s and the kids’ has been unplugged and replugged in so many times that it’s impossible to sort out how it’s all working at the moment. I’d say it’s working, but not that well.

Yesterday, Mark had a follow-up appointment with the ENT plastics surgeon who did the bulk of this surgery. The doctor came into the examination room and sat down in the chair right next to me. “How are things going?” he asked. I didn’t expect that moment of humanity. Like the raw nerve that I am, I felt immediately stripped to the bone,. I fought back tears. “It’s hard,” I said. “Mark’s doing really well from a surgical point of view,” he said. I knew that. It’s the answer, and not the answer. At all. The medical part explains everything, and it explains nothing.

The Early-Onset Alzheimers (EOA) Support Group on Facebook, and the raucous EOA Zoom Support Group out of NYC, remain the main places where I can connect my reality to anyone else’s. Traumatic brain injury support groups might be more relevant, my brother Dale, a physical therapist, told me. And of course, Mark’s recent rehab stay was exactly there: the traumatic brain injury unit. But it’s the EOA caregivers who are loudly present online, daily, saying HELP ME I AM DYING HERE. The response from the crowd is quick: I hear you. Everything you are doing is your best. This is the worst. You are not alone. We all feel alone. To my recent query — “When your LO is being a jerk to the caregiver, is it worth it to talk to them about it?” — the yes’s and no’s and do-whatever-feels-best balanced each other out. Along with the suggestions for trying CBD products, which I invested some money in this morning.

Because listen, I am trying so, so hard not to lose my mind. Many times a day, I revisit my daily happiness plan. It’s always modest. Bathe. Keep trying to read a book. Get the kids to watch Mark for 30 minutes and water the garden. Yesterday, the happiness plan included my first hike since Mark got home. A new and very competent caregiver arrived to the house. I oriented her to a few things I’d left out in the interview. Which hospital to send him to if she needed to call an ambulance. “If he codes, what are your wishes?” she asked, glancing at the refrigerator in a look I recognized as searching for the DNR. I left. I hiked into the park like my life depended on it. I stopped and ate my protein snack. I pushed on. I stopped by the creek, peeled off my boots and socks, and watched a heron descend awkwardly into a sycamore while I splashed my toes in the water. I took photos of some cool fungi and listened to music. I stayed in the park for two hours, long past my level of energy and the amount of drinking water I had brought.

I came home to the new caregiver reporting that Mark had just been “nasty” to her and to the visiting occupational therapist. I listened. I problem-solved. I apologized. I tried to let my recently freed toes carry enough weight in my tiny world to counterbalance Mark’s twisting moods. I went on Amazon and bought myself a new mushroom identification guide. I took their recommendation and bought another book called “Life’s Edge: The Search for What it Means to Be Alive.”

Mark wants independence. He wants nearly no communication, and he’s giving nearly none as well. I follow him room to room, silently, as he wheels about. I try to figure out what he wants and needs. Today, he did not want help when he slipped and fell back, trying to get out of the bathtub he insisted on using rather than the safer shower chair option I had set up for him. He did not want me to remind him, as he bathed, to wash his chest which has a line of dried blood down it from when he scratched open his neck incision a couple days ago. “Yeah yeah,” Mark says in quick cadence, like swatting a fly when I say, “Try not to touch that,” as he picks at his drain incisions, his temple graft, his neck incision.

We’ve been recently re-watching the TV show “Lost,” which Mark loves. The fiercely independent, loner, lonely character, John Locke, fights any attempt to restrict or define him. “Don’t tell me what I can’t do!” he insists, he yells, when anyone tries to limit him. Over the years, Mark has repeated that line many times, with humor. Now, I hear it in his fight for independence everyday.

Mark never washed his chest. The dried blood will be there for another week.

The worst time this week: Night 3. Mark woke up at 11:30pm, got into his wheelchair, wheeled into the kitchen and turned on the coffee maker. “It’s the middle of the night,” I said, following behind him. He ignored me and drank a cup of coffee. He wheeled himself to the couch and laid down and went to sleep. I laid down on the loveseat. I woke up a while later to Mark getting off the couch and trying to walk to the recliner. I jumped up to spot him. “YOU’RE NOT HELPING!” he yelled. When he was safely in the recliner, I went back to sleep on the loveseat. I woke a while later to the the crash of him falling, having impulsively decided to walk back to the couch.

I forge ahead with making the tiniest happiness plans that I can every day. Mark was okay with today’s plan to get sandwiches for lunch and sit in the car by Canonsburg Lake. We sat eating silently, watching people fish and kayak. We watched the herons living their solitary lives. We watched gaggles of geese, family units combined on land and then separated out on water. Moms and dads with their goslings in loose groups in between.

When we came home, I held on as tightly as Mark would tolerate as we walked slowly into the house. I reminded him gently to take each step up with his bad leg first, as the physical therapist has taught him. As he does not do, often, and falls crashing onto his left knee in pain.

I recently read on the EOA group a meme-of-a-post, something about the succession of roles we take in relationships over time. “Friend, Girl/Boyfriend, Spouse, Caregiver, Nurse.” When unsure of your role, when you have to caregive your loved one, the meme goes, always go back to the earliest place you can access in that list. I’ve thought about that a lot this week. Because “caregiver” and “nurse,” well those are obviously where I am. Can I back up to wife? Girlfriend? How can I be a friend to Mark? Could reorienting within these roles better help him? Or me?

A decade or two ago, I was wading through attic boxes and came across some of my old elementary school assignments that my parents had held onto. There was a journal in which every few days, I had to diary about things I had done. I wrote about going piano lessons, to a friend’s house, to church. I was a young mom when I was reading this, and it made me laugh out loud. Omitted from my writing was any mention of how I got to any of these places, which would have been my mom ferrying me to them. As well as planning them. Reading it when I had two young kids of my own, I recognized how we can overlook and take for granted the folks who make our lives functional. As well as rich, fulfilling, and happy.

Mark does not, can not, see what I do for him. The sixteen appointments — and that is not an exaggeration — that I arranged for him last week, all related to keeping him alive and helping him get better. The one appointment I had for myself, to take a walk in the park, the benefit of which was upended by Mark’s behavior. The empathy part of his brain is shut down. Maybe it will wake back up one day. Maybe not. I can’t let that change how I interact with him, how I take care of him. But I do have to fight how bad it makes me feel, everyday.

Who am I to Mark? What role would he put me in? Friend, girlfriend, wife, caregiver, nurse. I can only hope he’ll find a way to see me as a friend, at least. It would be a start.

Resetting

Both of my children are trans. They are adults, not children. They are 23 and 24. Their stories are their own, and they are unique. My heart is wrapped tightly around each of them. I remember with one of them, when they told me, and then told me again, and then desperately tried again to explain to me … finally something made sense. I was going to go there with them, or I would be sending them off into a life I would never truly know, with a wound slashed so deep that it would stretch from me to them. “I don’t know where you are going, but I’m going there with you,” I remember saying. It may have been my greatest leap of faith, ever. When you have a trans kid, or two trans kids, you have your skin peeled back and then you grow a thicker one. The old skin is the expectations that culture puts on you, your upbringing puts on you. Subconscious. Friends. Family. Religion. Workplace. Gender identities that slip past the narrow boundaries our society allows are deeply threatening to many. Surprising. Confusing. The new skin you grow is understanding. Empathy. A love with a fierceness great and wide. When your kid comes to you and says, this is me, please see me, the choice is clear. You rise or you fall. Too many parents fall. You? You see them. And you hold on tight as they carry you to places you’ve never been.

I feel this way, on the eve of bringing home a wheelchair with Mark in it. I have only one choice. It’s to go with him. He is there. I would imagine that he is just as scared as I am.

I could rise or I could fall.

Me? I am rising.

I will give it my all.

Panic and Preparation

Today. The occupational therapist trained me in wheelchair transfers from bed to chair, wheelchair to toilet, wheelchair to shower chair. Tomorrow, the physical therapist will teach me how to help Mark with steps. The patient care technician, changing Mark’s bed linens, said, “It’s exciting that he’s going home so soon.” “Well, to him,” I replied. My actually mood? This photo.

I’m deep into purchasing solutions. Makes me feel like I’m doing something. More grab bars. A shower chair with a back and arm rails. Shower wands for the two possible bathroom showers he might use. An alarmed mat to put next to his side of the bed so I can sleep without the terror of not waking up when he tries to get onto the bedside commode. A bed railing to help him get up safely. A bell he can ring if he needs something.

Someone just offered me a portable ramp, so Mark will be able to get out onto the patio and sit in the sun. Someone offered to help teach Matthew to drive, which I sadly must pass on to another adult as I can not be sure I could do it anymore.

I am many phone calls into looking for caregivers. I’ve tried to create an elevator pitch out of a story that is a long and tragic novel. It’s hard to summarize. I’ve struck out with agencies but have found a couple women who may be able to come in next week for parts of a few days. I’ve talked to the boys and told them how their dad he will look. How he can and cannot move. The new level of supervision he will need. That I will train them in how to do this when it is inevitably their turn. That today he kept asking me where his keys were. “But how will I get the car out of the [hospital] garage?” He asked over and over, no matter how I responded. Listening, answering, redirection, distraction, diversion. The options available.

I am on high, high alert. Poised for the storm. Trying to prepare. Batten down the hatches. Prepare the fallout shelter. Breathe. Breathe. Breathe.

No Title

I can’t come up with a title for this post. I found out today that Mark is being discharged with a loaner wheelchair, and a permanent wheelchair will arrive in a couple months. Will he ever walk again unassisted? Maybe. The therapists don’t know. For now, the one remaining muscle that attaches his quad to his knee is not firing. He can walk for about two minutes, tops, before the knee gives out. He cannot walk safely, at all, without a person right next to him to catch him in case he falls. He only needs assistance when walking, not when sitting, but with his frontal lobe injury, he impulsively decides it’s time to get up and do something. He still has a 24/7 one-on-one aid in his room, watching him. When he comes home, that job will be mine and the kids.

When he went into surgery, my greatest fear was that he’d have a stroke. That he’d come out with a greater level of need. I thought we dodged that bullet. We did not.

Tonight, I removed the living room area rug. I rearranged the living room furniture, the kitchen table. I removed Mark’s dining room chair. Our wonderful neighbor, Rob, is here installing grab bars for the toilet and a child-proof gate for the top of the steps so Mark doesn’t accidentally tumble down.

Mark is coming home on Friday.

In a wheelchair.

I am trying to figure out how to get him safely into the house.

I can’t believe it.

I’m not prepared.

Here’s how I felt today, when I heard it:

I.

Give.

Up.

Quick Update

Mark will likely be discharged on Friday. He’s making progress in many ways. He’s compliantly working with PT, OT and speech six days a week. He’s still refusing his heparin shot and bloodwork, so his need to stand his ground in order to feel he has some control over his life is intact. At least he’s accepting his other medications. His mood has leveled out quite a bit, thankfully. In some ways, the parts of this post-treatment phase that are about frontal lobe injury are familiar to me. I’ve navigated from where he is now up to a better baseline before. So while I did burst into tears when the case worker told me they were preparing him for discharge, I do know that I can adjust to having this version of Mark home again. In this case, being familiar with it is not necessarily a positive. The tears were because I know, from experience, that it will be a lot. For me and for the boys. The tears were also because Mark cannot walk unassisted, period. The reason for this is surgical. There’s two muscles, I have learned, that connect your quads to your knee. One of those is where it belongs. The other is now living in Mark’s forehead. His knee now buckles when he walks, and it does so unpredictably. Will his other muscles figure out how to compensate? I have no idea. So for Mark to get up every morning, for him to get to the couch, for him to get to the dining room table for meals, for him to get to the bathroom, will require a person holding onto him. This is a new level of … well, I don’t know the right words for it. I’m too tired to come up with them. You can fill in the blank. Bad? Hard? Absurdly bad? Absurdly hard? Mark is coming home. I feel like I should be preparing. And I am, to the best of my ability. In between bouts of lying in bed and staring out the window, trying to figure it all out.