Last year on Valentine’s Day my husband Mike gave me the most important gift he would ever give me. It wasn’t my favorite gift out of the sixteen years we had spent together. To be honest, I hated this gift as soon as I received it. Stranger still, on that terrible February day Mike didn’t even know he was giving it to me. In fact, neither of us even realized it was Valentine’s Day. Even so, Mike’s gift helped bring closure to an incredibly lengthy stretch of days which had, to that point, been the worst days either of us had experienced during the years we had been together. You see, on Valentine’s Day of 2021 my own Valentine, my partner of sixteen years and husband of almost three years gave me permission to allow him to die.
During the early days of the pandemic I began to notice Mike’s behavior was different. He was short-tempered. He complained he wasn’t understanding the work required from him in his new job. He slept a lot. I noticed as we walked our dogs (one of the few reprieves we had from being trapped indoors during March and April 2020) that he would meander about and seemed a bit lost. I had to encourage him to follow me more closely so we would get back to the house and continue our remote work, meetings, and phone calls. To be honest I thought he was becoming depressed. The months leading up to the pandemic were full of difficulty, some moments of joy, and also unexpected sadness. In the nine months leading up to the global shutdown I had taken on a new job. Our fifteen year old rescue dog Gatsby died (on the third day of my new job). Five days after that Mike was terminated from his career from his job of 20 years with a faltering employer — primarily due to politics which had nothing to do with him or his work. He rapidly found a new role with an excellent company managing relationships with nationally recognized clients, and working remotely, which sounded great at the time. Things seemed a bit better by the fall of 2019.
Then in November his mother, who had battled a variety of illnesses over the previous several years was diagnosed with end-stage lung cancer in her single remaining lung. She spent Thanksgiving in the hospital and then passed away two weeks before Christmas 2020. We coordinated her memorial and all of the family complications that always arise during those times. Then we took a brief sojourn to my family home in Houston for the Christmas holidays. Back in Pittsburgh we worked through the new year and then took a week in early March 2020 to go to California to visit friends and to enjoy some sunshine (which is hard to come by in Pittsburgh from January to March). While in California we began hearing the Covid-19 rumblings from Washington and New York. We returned to Pittsburgh on Saturday, March 7th. Then, as we all know, the world essentially shut down on Friday, March 13th.
In my mind depression was not an unreasonable or unlikely result of all that occurred between June 2019 and early 2020. Mike had lost his job then almost immediately started a new one working from home (not easy for a natural extravert). He then lost his mother to cancer, which was then followed by a global fucking pandemic. Of course depression was reasonable.
But in April 2020 I distinctly remember walking under the new magnolia blossoms at the bottom of our street and noticing Mike was lagging. He seemed confused and adrift. Over the next month I got him into video appointments with doctors and a psychologist. I adjusted his medications because he’d stopped taking most of them (including an antidepressant). I also talked with multiple friends (therapists and nurses) as I desperately tried to figure out what to do with a depressed person in a world where remote work and healthcare were not something any of us really understood how to do yet. My biggest unexpressed fear was that it was something physiological, but I fought that idea and kept seeking psychological help and medications.
My denial worked until it didn’t. In early May, thanks to my persistent questions and concerns, our primary care physician booked an MRI for Mike. I was terrified because by that point I didn’t believe Mike would even be able to navigate to the Radiology Department at the hospital on his own. But, due to the unknowns of Covid-19 I couldn’t go in and help him. Luckily the staff was able to help him with the use of a wheelchair, and I watched as they wheeled him away.
The rest of that day unfolded horribly and the events that took place after are far too complex for this writing. The short version is: after a long delay they called me into the hospital and sent me to the ER where Mike was about to be loaded into an ambulance to be taken into one of the larger hospitals were more specialists were available. The EMT driver told me there was an inoperable mass in his brain and Mike was experiencing severe hydrocephalus which is fluid buildup in the cranium which is putting pressure on the brain . This occurs when something blocks the normal flow of cerebrospinal fluid (CSF) from the cranium into the spinal cord. Surgery needed to happen immediately as there was an imminent threat to his life. I was allowed to be with him as they loaded him into the ambulance. I could see he didn’t know what was happening and also that he was scared. But I was told I couldn’t go with him, and if I did I would be told to leave anyway. Because Covid.
I drove home, crying and sobbing to the point of choking at the horror of having my worst (previously unvoiced) fears come to fruition. Even now I feel as if I’ve been crying since that day, for almost two years. Once I got home and pulled myself together I dug up our wills, various powers of attorney, and our advance directives, all of which we had updated a year earlier in May of 2019. I needed those because the decisions about Mike’s care were mine to make. I didn’t want the responsibility, but it was certainly up to me. The various documents made it clear that if Mike was unable to decide on his own then my role was to decide for him. The nurses and EMTs had told me to be ready to receive phone calls asking permission to perform the lifesaving surgery required to address the hydrocephalus. After reading the documents I understood I had no option but to agree. That was clear. So the calls came and I told them to proceed. I told them it was okay to open the skull of my beloved and insert cameras and other tools which would allow them to reopen the pathways that the CSF needed to be able to move between the cranium and the spinal column. It was terrifying… and then I had to wait.
Thanks to quick action on the part of the doctors, and despite the pandemic, all went well that day. Within 24 hours of his first surgery Mike was almost back to his normal self. He made a video call from his mobile phone and we had the first normal conversation we’d had for weeks. I wasn’t able to go to the hospital until the next day, which was also the day I learned “the mass” was primary brain cancer. This meant it had originated in the brain and had not metastasized to (or from) any other location in the body. He was already scheduled to have a second procedure the following day so they could biopsy the mass. He would not be able to come home until he recovered from that. The biopsy surgery took place and he came home a couple of days later. Then we waited for the pathology report that was destined to change our lives.
I have tried to write about the intervening days, weeks, and months, and I simply have not been able to do justice to it yet. There is no simple or concise way to write about someone’s death without speaking to their life. And there’s no way I can write anything about Mike without delving deep into the fifty one years that led to him being who he was when I lost him. Maybe someday I will be able to write that story in a way that satisfies me and does justice to the person I loved most in the world. The one who helped me become the person I am today. In fact, even though he’s gone my evolution continues and all the hard lessons, deep love, and surprising moments of beauty we shared are even now shaping the new man I am becoming.
But, I still can’t wrap words around the depth of everything; the pain, the joy, the terror, the love, the compassion, the hope, and the gentle madness of being alone in a house during a global pandemic while helping the one I loved come to terms with his mortality, while also quietly coming to terms with it myself. That is what took place for me and Mike between May 2020 and the winter of 2021.
(While I have not yet written the full story the way I want to I did create a Caring Bridge site during Mike’s illness. Most of the ups and downs, the fears and hopes, and the desperate cries for an unfulfilled peace and safety are all captured in my journal entries there. It suffices, for now.)
After a long, and terrible journey Mike and I arrived at a crossroads in early February 2021. Mike had been getting bi-monthly MRIs to check the status of the tumor, which had been identified much earlier as stage IV diffuse midline glioma. For many months I had avoided research about that specific cancer and related statistics, but over the course of that time Mike was in and out of the hospital with infections, radiation treatments, and a second bout of hydrocephalus. Due to all of those events I had to learn how to best help him, which meant I had to do research about the treatments he was receiving and their related side effects. Within that time of learning I soon realized my time with him was going to be far shorter than even the worst case scenarios I had initially envisioned. On average people live 11 months after this type of cancer is identified. February 2021 marked the beginning of the tenth month following Mike’s initial diagnosis.
Everything changed on February 5th when Mike had what would be his final MRI. In the consultation following the scan we were told by the doctors that there were two new, smaller tumors elsewhere in Mike’s precious brain, and the primary tumor showed signs of change — which was very bad. More disturbingly, the cancer was freely moving in his CSF. The latter issue had likely caused the second bout of hydrocephalus which had been treated with a ventricular shunt the prior November. And the buildup of cancer in the CSF was likely the cause of the slow failing I’d been watching with growing despair over the course of December and January. By this time Mike had not been able to read since June 2020. He’d stopped being able to prepare his own food by the Fall of 2020, and he had been sleeping for 18 (or more) hours a day since September. I had to help feed him because he could no longer hold the utensils correctly, and even if he held them he had trouble finding his mouth with the spoon. I helped him go to the bathroom every time, or else risk a mess requiring an hour I didn’t have to perform clean-up. I had paid help coming in daily, but the services were struggling to find staff due to the pandemic and turnover was rampant. Just bringing staff into our home was a risk. But by that late date I was far beyond my abilities to cope alone, and the additional help was an absolute must. Mike could no longer remember the names of common household objects, nor even the names of our three dogs. His frustration (because he was still very intelligent) was enough to make him shut down and refuse to speak unless he absolutely had to.
On the day of the final MRI, February 5th, as the doctors explained the changes that had occurred since the last time we’d seen them, Mike halted the conversation with the doctors before we were really done. I think it was primarily out of fear, but also out of exhaustion. MRI days were incredibly draining for both of us. The doctors had presented some options for care, and I spent the next week or so talking with them via phone, mostly while Mike slept. I did my best to determine what actions to take and in what order. Options included chemotherapy which had not been on the table prior to then, but which might have been beneficial for the free-floating cancer in the CSF. They also wanted to do a full spinal cord MRI (the early ones were only of his brain) to determine if there were tumors on the spine. Because of the free cancer cells in the CSF they said it was likely that more tumors would be found along his spine. They also said targeted radiation could be used to deal with the new, smaller tumors in the brain, which sounded good, albeit as a stopgap measure.
The problem was that Mike was exhausted and so was I. By that time getting him into the shower was a challenge, much less getting him down the stairs and to the hospital. The plan they were discussing was going to require multiple visits to the hospital, and the potential for a long-term positive outcome was virtually nonexistent.
By Sunday, February 14th, 2021 I was nearly unable to function. The variety of care options available was significant and it was clear I was expected to make the decisions about how to proceed. Mike was truly no longer at the point where I could have any deep conversation with him. He was suffering from severe exhaustion and was sleeping most of the day. The hours he was awake were for eating, watching a little TV, and then battling anxiety until he finally had to collapse into bed again. I had to walk with him everywhere for fear he would fall (which would have meant an immediate trip to the emergency room). So on that hated Sunday I dug up Mike’s “Durable Healthcare Power of Attorney and Healthcare Treatment Instructions.” This document is also known as a living will or advance directive. We had completed our first iterations back in 2012 when we were a gay couple who couldn’t marry and who wanted to protect each other as much as we could. Then we married in March of 2018 so we arranged to update the documents in May 2019. Mike was diagnosed with cancer a year later.
The documents were mostly boilerplate but we had worked with our attorney to tailor them to our own family, medical, and financial situations. At the time we completed and signed them in front of a notary in May 2019 we didn’t pay much attention to the content except to blithely answer questions which, at the time, seemed purely theoretical and completely at odds with the future we were planning together. And yet, on that May day as we, in beautiful ignorance, signed those boring, wordy documents, Mike was actually preparing me a Valentine.
On Valentine’s Day 2021, nine days after that final MRI, I was weighing so many options: chemotherapy for the cancer cells in the CSF, multiple-stage MRIs for further diagnostics, radiation for the new tumors in the brain, additional at-home care because Mike’s needs were only growing, and finally — how to get us both vaccinations if I was able to get an appointment because lines were long and Mike could not stand up for more than a few minutes at a time. The number of decisions was beyond the scope of what I could handle. I was already managing daily medications, meals, healthcare, bathroom breaks, dog care, home care workers, occupational therapy, physical therapy, speech therapy, communications with family and friends, and also holding down a full-time job. All remotely, and during an ongoing global fucking pandemic.
With no awareness of what day it was, I reopened Mike’s living will on February 14, 2021. I had not touched those documents during the intervening months following the initial burst of activity when I had provided copies to all of the various medical professionals involved in his care. When I reopened it I started reading out of simple exhaustion, primarily to give me something to occupy my mind rather than try to face decisions which were far beyond overwhelming. And in the document I found my Valentine — right there on page 6. It went like this:
“If I should suffer from severe and irreversible brain damage or brain disease with no realistic hope of significant recovery, I would consider such a condition intolerable and the application of aggressive medical care to be burdensome. I therefore request that my healthcare Agent respond to any intervening (other and separate) life-threatening conditions in the same manner as directed for an end-stage medical condition or state of permanent unconsciousness as I have indicated below.”
And there were his beautiful, blue initials next to “I agree.”
Also in the document were statements to the effect that he did not want any life prolonging procedures or treatments including CPR, ventilators, dialysis, surgery, chemotherapy, radiation, nor antibiotics. And then he said if he had an end-stage medical condition he wanted only the following: prioritization of comfort, hospice care — at home if possible, no feeding tubes, and finally: “do not resuscitate.”
I read those words and immediately burst into the most grief-filled tears I had experienced to-date in those long months. I held a beautiful and terrible gift in my hands. I didn’t want it. I wanted to toss it into the fireplace. But I also knew all of my agonizing over decisions was over. Mike couldn’t really talk to me anymore, but he was speaking to me with the clarity of an earlier wisdom neither of us had comprehended nor considered at the time we signed all those documents. He and I had given each other a gift and I was the first one, the only one, who was able to turn that gift into action. Decision-making was no longer required. The time to focus my full attention on giving him care, protection, and love had just arrived.
I nearly passed out gasping from the tears. I don’t know how long I cried. I remember our dogs being with me and I recall worrying Mike would hear me even though he was sleeping upstairs behind a closed door.
When I climbed out of the grief I called Mike’s oncologist (whom, months earlier had given me his mobile phone and told me to call him anytime, which I had done many times in recent months). I told him what I had read and said that I was implementing Mike’s wishes. He very compassionately told me he thought it was the right decision, and he made the necessary calls. The following day hospice came in to help. At first I let Mike think they were part of the service we had already been using. But a few days after hospice was on-site I sat down and talked to him during a brief interlude of lucidity, and I told him I thought it was time to work with hospice and to stop having to upset our lives with doctor appointments and long waits at the hospitals. He said he agreed. I emphasized I was talking about hospice and I asked him if he understood what I meant. He said “Yes.”
I then told him they were already in the house and were helping us on a trial basis and I explained that he would no longer have to meet and learn the names of any new people (which had been a burden due to turnover and an abundance of home therapy workers). His final care team was in place and he seemed satisfied. So I helped him go back to bed.
Sixteen days later, there in our home, I held the hand of my beloved, handsome, charming, kind, outgoing, intelligent husband Michael Shoemaker as he gasped and fought so bravely against the inevitable. I had the terrible and beautiful honor of being with him as the final moment came and went. I stayed here while he left me alone to somehow carry on without him. He found his peace at 7:19 AM on March 2nd. The same month we had first spoken with each other in 2005, the same month in which we had married on the first day of spring in 2018, and the same month I was born almost 52 years earlier. My love left me, but I was with him all the way to the end. And in the midst of the pain and numbness, and also the relief of knowing his suffering was over, I knew I had done the right thing because of the words he had left for me almost two years earlier and which I had read with new eyes just over two weeks prior, on Valentine’s Day.
Final note: It goes without saying that I recommend everyone make the time and expend the effort to put together a living will with your advance directives, as well as a financial power of attorney, and a will regarding your estate, regardless of the scale. There is a cost, but it is worth being secure in the knowledge you will leave your loved ones with the information they need to act according to your wishes. It isn’t fun to deal with, nor to think about, but it is an act that will potentially mitigate a great deal of pain and difficulty if, god forbid, the need arises in which it must be used. It has the potential of being your final gift to those you love. And that is no small thing.
