Michele had grown increasingly disruptive and violent throughout August. Whatever truce we’d achieved with her medication was clearly over. She’d developed a routine of rearranging the furniture and tossing picture frames from the walls. I’d all but abandoned using the stovetop because she would remove the gratings from it and walk around with them, menacingly swinging them if I tried to take them away. The outside doors had to be barricaded at all times because she would attempt to run away. She wouldn’t eat unless she was positively starving, and was spitting her food back at whoever tried to feed her. She’d begun to undress inappropriately. The swearing had grown worse. Everyone was scratched or bruised or both.
I spoke with her neurologist about what was happening, and in particular, the speed of her decline. He agreed that it seemed like a new stage of whatever this was, and started making arrangements to have additional imaging studies done. Even though we wanted to believe that her issues were dominantly psychological, we were both worried by the discrepancies in her brain scans we’d seen earlier. I made an appointment for Michele to go see him the day after Labor Day, a little more than a week away.
We didn’t make it.
On August 30, just before daybreak, Michele woke up in a panic, unaware of where she was or who I was. After a long while of screaming and destruction and dishing out more than a few bruises, she gradually came around and cried briefly as I dressed her and myself over what she’d done. I kissed her and held her, telling her over and over that I loved her and it would be ok, as I waited for the morning medicine to fully kick in.
She spent the morning pacing restlessly, unable to be still for more than a minute or two. Every attempt I made to distract her only provoked more violence, toward me, toward the dogs, toward anything that was in her path. I gave up, and let her walk, following behind her, putting things back as she would move or shuffle them.
I followed her for hours that morning, stopping only long enough to prepare us a simple lunch. She wouldn’t sit to eat, so I followed her around, giving her bites of her sandwich in-between acts of destruction. The emergency meds I’d hidden in her lunch slowed her down as I had hoped, and she collapsed on the couch. Exhausted, I sat back in my chair to catch a little rest. I dozed off.
I was awakened by the sound of her screams and a rain of blows. Even as I struggled to get up, she kept at it, until at last I was able to stand. She seemed to recognize me then, and her face softened, and she was back. She hugged me as if she’d not seen me in a long while, and then began an anxious frantic babbling. Her eyes seemed to beg me for help. I gave her an additional dose of the emergency meds, then dialed 911.
For the third and final time, police and paramedics came to our house. Michele panicked when she saw them, and lashed out to attack them when they came near. She was quickly restrained and sedated. I cried when they put her in the back of the squad car, and took her over to the hospital.
Her neurologist had her admitted to the neuro-intensive care unit. The tests we’d discussed would happen the next morning. Patiently, kindly, he explained to me that the onset and severity of the issues she was exhibiting had to be either a mechanical or chemical issue. The best course of action, now that she was hospitalized, was to get some answers.
She was there for the next 11 days, thoroughly sedated and restrained to the bed for almost that entire time. Every test imaginable was run, and with each arriving result, a terrible realization started to come into view. Her brain had suffered significant atrophy, especially in the temporal and frontal lobes, the centers of speech and behavior. In comparison to imaging done earlier in the summer, the change was evident and dramatic. There was no denying it. It wasn’t purely psychological, as I’d so desperately hoped. The D-word, dementia, came up again and again. But what kind of dementia was this, her neurologist wanted to know? Alzheimer’s? Frontal-lobe? Lewy Body? A spinal tap showed the terrible hallmarks of unwanted proteins.
But in my head was another D-word. The worst one. The one that for months I’d been secretly fearing and denying. Death. My beautiful, beloved Michele was going to die. She was in fact dying. We didn’t know what was causing it. And it was accelerating.
I sat by her bedside, stricken by the awful revelations, feeling helpless and lost, holding her restrained hand, looking again and again at her impossibly beautiful face, as she lay there, dying.
On the ninth day, she startled awake when she lifted briefly from the sedation fog, and I asked her what she wanted. She managed a single word. “Home.”
With new imaging studies and other tests run and the drug regimen adjusted up once more, Michele was stable enough to be discharged from the hospital. I cannot tell you how emotional we both were, as I pulled into the driveway. We walked in the door hand-in-hand, and just inside, we held each other and laughed and cried, as our dogs jumped around us. The smile on her face was heaven itself. I barely went to work at all that September. Though the day sitters came to be with her, mostly it was just she and I together throughout that long month, trying to repair and rebuild, trying to hang on to what remained of us.
We immediately settled back into our routine of every evening coffee drives. We’d frequent our favorite haunts, but sometimes we’d just get in the car right before sunset and drive west for miles and miles, listening to her favorite music, chasing the sun from the sky, riding back with all the stars out.
We grocery shopped and went out to eat, when her mood and the drugs permitted. We cooked together, after a fashion, she “guiding” me while I prepared the meal, and we ate every meal sitting side-by-side. She always enjoyed cooking, and would smile and raising her eyebrows and laugh as I made a few deliberate missteps, just to see what she’d do. Normal seemed like a possibility. For a couple of weeks, I couldn’t even believe that she had been hospitalized.
There were, of course, follow-up visits, weekly, to the neurologist and the psychologist. The imaging done in the hospital was repeated, each time showing a new worrying concern here or there. She began to lean a little off-center when she stood, and her steps were more deliberate.
As the sun would start to set each day, I had a narrow window to give her medicine, to ensure a smooth evening. Missing that window opened up the possibility of agitation, and occasionally, a little more.
But I had a new emergency drug in our growing home pharmacy: a prescription of fentanyl patches. I had to use them on her a couple of times, and each time they scared me. They took a little longer to come into effect than other drugs, and lasted much, much longer. With one on, she would sleep deeply for 12 or more hours; she would get her rest, while I stayed awake the entire time, making sure that she was just sleeping, and still breathing.
September gave way to October, and Michele continued to decline, her physical symptoms more pronounced, her mood, more erratic. The drugs weren’t leveling her out as much as they had been only a few weeks earlier.
She was just a little agitated one evening after dinner, and after giving her an additional dose of Xanax, I suggested that we go for a ride. It was a warm evening, and I put the top down. We rode down and parked by the lake, and the sky was striking. She was relaxed and smiling, and we drove on up into the northern reaches of the county, passing horse farms along old Indian trails, singing and holding hands. Soon enough, she fell asleep, and I kept on driving, alone with my thoughts of her, and what might be going on.
We were a few miles from home, when she woke up suddenly and panicked. In a blink, she had unbuckled herself and was trying to jump out of the car. I slowed and stopped the convertible quickly while holding her by the pants waist. All the while, she was struggling and crying. She simply didn’t know where she was or who I was: she only knew that she wanted to get away. I calmed her momentarily by just hugging her close to me and saying her name and my name over and over. With that little reprieve, I got her reseated and buckled in. I held her seatbelt at full tension as I drove slowly home along the backroads.
I think my heart finally calmed down when the garage door closed behind us. An uneasy night followed, with Michele unable to rest for more than 10 to 15 minutes at a time, despite the drugs (and without the fentanyl). I called her neurologist late that evening, and he arranged to meet us the next morning.
At an appointment the next morning with her neurologist, I replayed everything that had happened. The options weren’t good. The imaging definitely showed atrophy, and it was clear that she was developing a tolerance for the drugs. We’d talked previously about using electroconvulsive therapy (ECT) as a potential treatment option, if the drugs weren’t working or her behavior situation worsened. She’d reached that point, he felt, and with my consent, he made arrangements for Michele to be admitted to to a psychiatric hospital for evaluation and perhaps ECT.
We stopped by the Krispy Kreme and got a dozen donuts on the way home. It was our guilty pleasure, then, to stop for them after every doctor appointment. I left her downstairs eating donuts while I went upstairs and packed her bag. At sunset, we drove away again, stopping for coffee, singing and holding hands, as I took her over.
After getting her settled into her room on the ward, I took her with me to a quiet spot and pulled two chairs close together. The medicine they’d given her to calm her was kicking in, and she looked at me, peculiarly, flitting between alert and faraway almost with every word I spoke. I held her hands in mine as I told her that I loved her but she would have to stay there with those nice folks for a little while. I promised her I would visit her every day, and before she knew it she’d be come home again with me. She started to cry then, and I saw in her more awareness than I’d seen all month.
We stood there alone in the middle of the ward, holding onto each other, holding onto the last of normal, while the nurses and patients moved and flowed around us. A nurse distracted her with the promise of pudding, as a security guard showed me out. I stood on the other side of the locked door, watching my beloved through the door’s narrow reinforced window, until I couldn’t bear it.
I broke down when I got home, swallowed whole by its new emptiness. Normal set with the sun that Tuesday evening, October 13th.
“Behavioral variant frontotemporal dementia,” they told me. They had every right to think it, too, for Michele showed all the classic signs of it: radical changes in her behavior, general apathy and severely blunted emotions, and an almost complete deterioration in her ability to speak and understand language.
They were wrong, though. As her neurologist and I chased the cause of her dementia that fall, we were often wrong. She showed so many symptoms of so many different things, but never a complete set of any one of them. All the while we puzzled, Michele grew worse and worse.
After the obligatory 10 day stay at the hospital, with more imagining studies done and yet another level change in her drugs still underway, she was accepted for a period of respite care at a nearby assisted living facility with a separate memory ward. She had her own room that I filled with photographs that she loved. I hired private sitters to be with her 24-7. The plan was for her to stay at there for three weeks, while she adjusted to her new medications.
She only made it 13 days.
“Please come to North Fulton Hospital right away,” the emergency room nurse said. My heart sank and raced as I thrashed through all the possibilities.
I arrived at the ER to find her heavily sedated, sporting a nasty long cut above her eyebrow. Her sitter told me that she’d suddenly thrown herself face first into the door of her room. I wasn’t surprised: the drugs weren’t helping at all, she was getting worse, and I could see it in her eyes during my nightly visits.
Michele had spent almost the entirety of her time in assisted living just barely under control. She’d been disruptive with the other patients there, and mealtimes had been mostly a disaster. Her sitters only got peace when she lay down to sleep in the evening. Once more, she was admitted into neuro-intensive care.
The doctor and I sat in his office, a few days later, spread all her results out in front of us and reviewed all the evidence. The latest round of imaging showed considerable atrophy of her temporal lobes, and general atrophy elsewhere in her brain. The drugs were only working at levels that completely sedated her. Protein tests of her spinal fluid weren’t conclusive enough for Alzheimer’s, and she was both very young for its onset and her genetic analysis revealed no known genetic mutations for it. Still, we couldn’t rule it out. She’d not had a PET scan done yet, so one was ordered. Since that test was to be done in a trailer that was brought to the hospital only once every week, she would have to be stable enough to endure it.
I reminded her neurologist that she’d had a chronic runny nose off and on for the last year, and that it had played a big role in her development and cure of sleep apnea. I wondered whether she might be suffering from a brain sag due to loss of spinal fluid through some problem in her sinuses. In a research paper I’d found, I’d read that frontotemporal brain sag syndrome could account for the behavioral symptoms we’d seen in her. We had our diagnostic plan then: if she was stable, she’d get a PET scan, and we’d get an opinion on it to see if it showed the kinds of plaque build-up typical of Alzheimer’s; if not, she’d get a cisternogram, a nuclear isotope injection/multi-day imaging study, to check for a leak in her spinal fluid.
I went to my car to drive home that evening, and the sunset caught my eye. It was so vivid, and so was I. For the first time in a long time, I felt as if we might finally have a way to know what was troubling my beloved.
On the morning of the PET scan, Michele was very combative and disorderly, and in no shape to be transported to and from the trailer, let alone lay still long enough for the scan. It was the single best thing that could have ever happened. The isotopes were injected into her spinal fluid, and the cisternogram imaging sequence began. The next evening, as her neurologist and I sat in front of a computer screen in a dark office in that hospital and watched the results come up, we saw before us something unmistakeable: a clear clinical probable cause for her symptoms. She had a big serious problem alright, but it wasn’t a leak.
Bad news can sometimes be good news. That big serious problem put onto the table a potential cause for all her troubles, one that I’d only dared to hope for. On November 19, 2015, we discovered that she had a significant blockage in the ventricular system of her brain. Michele had hydrocephalus, and the pressure was building from the spinal fluid trapped there.
Among all of the many terrible, terminal possibilities that had swirled around us for the past year, she now had a chance to be cured. I hugged her neurologist, and then, overcome, I ran down the hall to her room, to hug her.
Knowing about a problem is not at all the same as knowing whether it can be solved. A diagnosis of hydrocephalus sounded like bad news, and it was, but it was also very good news: there is a condition called normal pressure hydrocephalus (NPH). Eighty percent of the time, people who suffer from this are misdiagnosed as having Alzheimer’s or some other dementia, and that’s a shame, because it is one of the very few causes of dementia that can be treated or even reversed.
After the joy of the discovery wore off, I met with her neurologist to discuss her options. He walked me carefully through a very difficult conversation. The speed of her decline and the behavior changes suggested that the pressure was affecting very critical parts of her brain. With the blockage and her enlarged ventricles, he said, Michele’s condition would continue to worsen and she would die. There were a couple of surgical options, to attempt to clear the blockage or to install a permanent shunt, but given her uncertain mental condition and the rate of decline, a neurosurgeon might not consider her to be a candidate. If she had the surgery and if this was truly NPH, she might not recover.
I sat across from him quietly, silently repeating the same two sentences to myself: She was going to die unless she had brain surgery, but she might not survive it. She might never be herself again even after surgery, but she might. The neurologist knew exactly what I was going to say. Even if there was the most remote possible chance, I had to take it for her, because we loved one another and she would have done the same for me. I just looked at him and said, “What’s next?”
“Let’s find out if she has NPH,” he replied.
I’d come across NPH earlier while doing research into what could have been causing Michele’s dementia, but it didn’t seem likely, because there is a group of three symptoms that generally signal it, and she was showing only two, dementia and incontinence. She hadn’t shown the third one, the cardinal sign of NPH, a visually distinct change in walking sometimes called a magnetic gait because it looks as if a sufferer’s feet are sometimes glued or stuck to the floor. However, by that point she had been sedated and in the hospital bed for almost three weeks. I hadn’t seen her walk since the end of October. Would she now show the gait disturbance? There was only one way to find out. Her neurologist ordered a temporary reduction in her sedation, and Michele started coming around. Very carefully, two nurses got her into a sitting position, and then slowly helped her onto her feet. I’d been taking videos of her off and on since she started her decline, so that I could discuss any abrupt changes with her doctors. I filmed her as she took her first, halting steps in November. The video showed, as clear as a bell, that she had the gait disturbance. The diagnosis of NPH seemed all but certain. Now, we had to figure out if she would be a good candidate for getting the shunt surgery, and that meant that she had to have a spinal tap removal of a much-larger-than-ordinary volume of her spinal fluid. If her symptoms lessened or reversed after the spinal tap, chances of the shunt surgery helping her would be viewed as significant. But we had a problem: the cisternogram that showed the blockage had required that she have a radioisotope injected into her spinal fluid as a tracer. Not enough time had passed, and her fluid was still too radioactive to be safely withdrawn via the tap. We had to wait for another five days. She continued to worsen.
“Remember,” the neurologist said to me as at last I helped him roll Michele into position for the spinal tap, “the change won’t be immediate, and whatever happens will wear off in a few days as the fluid builds back up.”
I assured him I was ready for anything, and he performed the procedure, the equivalent of five normal spinal taps. I sat back in the uncomfortable recliner in her room, there to stay with her, to await.
Late the next day, it happened. Michele awoke. Slowly, slowly, she became more aware. Her speech started to improve. She regained the ability to walk almost normally. It seemed as if the clock had been rolled back a couple of months. But it did not last.
As the neurologist mentioned, the recovery began to wear off. With indescribable sadness, I watched her lose again her abilities, as her body remade all the spinal fluid that’d been withdrawn, and the pressure returned.
I sat in my car late one afternoon at the end of that November and reflected. She’d clearly benefit having the shunt surgery, as the temporary relief given by the spinal tap had shown. The surgery would be risky, but the risk was worth taking. And maybe, just maybe, she might make a near complete recovery. For the first time in what seemed like forever, I allowed myself to think it, to feel it. I had hope for a future with my beloved.
The hope I’d felt about our future was too soon grounded by our reality. Her positive awakening after the spinal tap gave way to the same cognitive state as before, as the pressure built back up. The imaging results from the PET scan showed results consistent with Alzheimer’s, but also could be interpreted as what you’d expect from someone with hydrocephalus, which she clearly had. She needed surgery to relieve the blockage, but given all of her conflicting imaging results and the like, the neurosurgeon wanted to rerun the test. Given her condition, we’d have to wait a few weeks to do that. She was too ill to return home to wait.
On Dec 2, 2015, she was moved from neuroICU into her private room at a dedicated memory care facility near the hospital. It would be her home for the next two months. People who are in memory care are suffering with different stages of their illnesses. Some of them are very mobile and coherent, and they spend their days walking around the facility, doing crafts and other activities, eating their meals seated together but alone with their thoughts, watching televisions tuned to old sitcoms, awaiting visits. Other, more gravely ill folks keep exclusively in their rooms, unable to get out of bed, and needing constant care. Michele was somewhere in the middle. I had to hire private sitters to be with her 24 hours a day, for the limited permanent staff at the facility didn’t have the ability to keep up with the ever-changing needs of the twenty or so residents. She walked constantly, unless she was made to sit to be fed or was crashed out on some chair, for either her illness or the medicines that kept her illness under control made her either restless or sleepy. I visited her usually twice each day, in the morning just after she’d had her breakfast, and in the evening, just after dinner. I often spent our visits telling her stories of our past, holding hands, and walking with her endlessly around and around the facility.
As the pressure grew, she grew worse. She lost a lot of weight, because she wasn’t eating much. Her vocabulary, already down to just two interchangeably used words (yes and no), vanished, and she became mute, relying only on fleeting gestures to communicate. She lost all real expression and mostly just maintained a neutral blank look.
Worryingly, she had a significant leaning toward her left side, so much so that walking had become dangerous for her. Two weeks after she arrived, she was wheelchair-bound, and our visits evolved into a new routine, of me pushing her around the circuit of the floor. Some of the residents, who before would walk with her when I wasn’t there, would follow us as I pushed her, and I’d have to race us a little ahead of them so that I could whisper in her ear all the lover’s things that I’d always said to her. Every so often, for a while, I could tell she was understanding them, because she’d blush or reach to hold or pat my hand.
The week before Christmas, I wheeled her out to my car. I easily lifted her thin frame from her wheelchair and buckled her in. I put on her favorite playlist, the one we always would listen to when we would take our night rides, held her hand in mine, and took the long way over to the hospital so that she could undergo the second extended lumbar puncture.
The procedure is extremely painful, as anyone who’s had a spinal tap can attest, and I couldn’t bear to watch. Even though she was very weakened, it took five people to hold her still enough for the procedure. After it was done, I stayed with her overnight, watching her sleep, holding her hand. It was the first night I’d spent with her in more than a month.
I have a video of her that I took the next morning, as she woke up. The change, even though it was still very early, was remarkable. On the video, I said “Good morning” to her, and she turned and smiled at me, my first smile of December. I asked her if she wanted breakfast, and she says “yes.” The video shakes a little then … I was crying with happiness.
On December 23rd, she was discharged and went back to memory care. Even though I’d been cautioned that the second test typically does not have the same degree of results as the first one, Michele defied the odds. Although it was more slowly arriving than before, she improved dramatically in her speech, posture, and behavior. In the days after the procedure, she was not just out of her wheelchair, but walking swiftly and fiercely everywhere, and climbing into her bed and onto couches without assistance. Best of all, this response proved that regardless of any disease process that might be going on, she was a great candidate for the shunt surgery. It was a Christmas miracle.
The brain surgery she needed to save her life was eight weeks away. There was nothing to do but wait, as she once again awoke, and then fell. Christmas 2015 came and went. We sadly celebrated without her at home that morning, then all went to see her. She’d not yet left the wheelchair, but she was able to follow us modestly as we gathered around her and gave her some of her presents. The full awakening effect of the extended spinal tap was yet to occur.
In a few days she became more mobile, and more of a challenge for me and for her sitters as she did. She walked incessantly past the faux village shops and up and down the halls of the memory care facility. My visits with her were more of quick walk, following her around, most of the time with her seeming to wonder who was this semi-familiar strange man chasing after her. She’d soften and warm to me, though, because I always brought her a frappuccino.
Sometimes, I’d discover that either the pressure or the drugs she was taking would make her lean one way or another. Even though there were handholds ever present throughout the facility, she would wear a gait belt, and soon she’d slowed enough for me to walk alongside her, me carefully holding the belt with one hand while holding her one good hand in my other.
We glided that way, the too-young couple, slowly working our way around, past the always open doors of the residents’ rooms, past the tables where older versions of ourselves patted one another’s hands or smoothed thin hair, aglow with romance, but one always sadly aware of what the other wasn’t. We took our turn at those tables too, same pats, same gazes, as they would waltz to their old favorites, at peace with their fate, old lovers, holding hands. In that most despairing of places, faith and hope and love, deep abiding love, was everywhere.
There are always moments in life that you think of as boundaries. The lines you cross. Doors that cannot be left open. Moments that require you to commit, fully, with outcomes unknowable, safety not guaranteed.
Her mom and I picked up Michele up on the morning of February 9th, 2016. I believe that all she knew was that it was cold that morning, and that two kind strangers were taking her out for a ride. We knew different. We were taking her over to the hospital. It was the day of her brain surgery.
Though it was a very short distance to cover, the ride seemed to stretch out. Once we arrived and she was checked in, time continued to run wrong as we waited for her name to be called.
The clock continued to run down as we helped her undress and get into her gown, as the nurses conducted their pre-op rituals, as we met with the surgeon and the anesthesiologist. I held her hand as the meds kicked in and she slipped into the carefree. I kissed her forehead and told her I loved her and walked away from the Michele I’d known, to join her mom in the purgatory of the waiting room, committed fully, beyond frightened.
Time stopped. My heart quit beating, and I took flight, passing through walls, searching, finding myself beside her and yet somehow above her as she lay there in on the table. She and I waited together as nothings in a no-place, where time couldn’t be. I saw the surgeon’s covered feet on the floor before me. I looked up but I could not read his face.
He appeared in the waiting room too soon. Michele's mom and I froze. “The surgery went smoothly, she’s doing fine, and she’s in recovery. We’ll move her to the ICU as soon as we can, and you’ll be able to see her then.”
We cried as he left us, and time kindly sped up, and sooner than we thought possible, we were at her standing by her bedside. I held her hand and kissed her and sat down in that glass-fronted room, ignoring everything except her, my beautiful beloved.
Her brief second life began with a single word on the morning after her brain surgery. Michele slept for more than 18 hours following the surgery. During that time, she was moved from neuroICU into a less critical care ward. She would waken briefly for the frequent blood tests and monitoring, but would quickly fall back asleep. I worried the nurses about this, but they assured me that this was to be expected.
While she rested, I waited beside her in her room, wide awake. I did not want to miss a thing.
Her neurosurgeon stopped by to check on her, and assured me that the shunt was properly in place in her right lateral ventricle. He traced the drainage line he’d carefully routed down her neck and across her chest and told me that it was emptying into her abdomen as expected. He cautioned me that we likely would have to stop by his office a few times to get the pressure relief set appropriately. What else could I say to him? I thanked him for saving her life.
Her neurologist collected me, and took me again to that radiology room where months earlier we’d made the discovery of her hydrocephalus. He showed me the latest imaging, done pre- and post-op, showing the perfect placement of the shunt, and we talked about her prognosis. He’d never had a case like hers, and it might be a while before we knew where she was. He told me that we were now in uncharted territory. We walked back to her room, and I hugged him and thanked him for taking the chance on her.
I kissed her as she lay sleeping, settled into the recliner right by her side, and weighed everything that had happened, every big and little thing, everything that had brought us from our ordinary comfortable life to this scary place and time. And I couldn’t take it any longer.
I broke down. Her nurse came in and sat besides me. She held my hand and just listened as I poured it all out. She got me a warm wash cloth and waited until I subsided. I never did catch her name, but I can never forget her kindness.
It was mid-morning, and the daylight was coming through the window, when I woke. Then I realized that she was stirring. I quietly moved around so that I could see her and she could see me. I said good morning and told her that I loved her. She looked right at me, and she seemed to study me for a long, long time. Then she eased and smiled so beautifully. Softly, my beloved said the one word I never thought I’d hear her say again... “Keith.”
Keith McGreggor is a professor of the practice in interactive computing at Georgia Tech. This piece is an extract from his upcoming memoir, The Vigil. The book is about the loss of his beloved wife to early-onset Alzheimer’s disease, and his journey to distribute her ashes in all the places she loved.The Vigil was written one Facebook post at a time, in a stream of consciousness manner over the course of more than a year, as he struggled to find the grace to live through the immense grief.