I missed the Facebook trend. Although I originally had a Facebook account in 2004, I deleted it when I became a teacher, afraid that some student would find me or I’d somehow compromise my professional integrity by having an online persona. This ended up not mattering for teachers my age — with the exception of a few teachers who made terrible choices — but I missed the trend. Now, I find Facebook and most social media overwhelming and all-consuming.
This comes at a cost. I miss some things that my friends do — they are not as connected to me as they might be to others. I realize there are whole conversations and lives online that I don’t know about. But I accepted that years ago.
So it was ironic that when Jeff was sick… really sick… Facebook was the way to connect. Jeff was part of a patient group, which is a closed group, and which I can no longer access because I deleted Jeff’s Facebook account a few days after he died. He joined that group to learn about life-saving clinical trials or connections. I am part of a cholangiocarcinoma caregiver group. And I check that group a few times a week. I couldn’t tell you what my friends are up to online, or who is waiting for me to accept a friend request, or what’s selling on Facebook Marketplace. But I can tell you what many caregivers are struggling with.
One post hit me recently. Not at all what I expected to read, I kept rereading it, to make sure I understood it correctly.
You all sound so strong and patient. I’m not. I want to escape this hell. I want to leave and never look back…. I’m trapped… I will never abandon him though I can imagine how wonderful it would be.
Before Jeff had cancer, I would’ve been horrified by such a post. I would’ve thought how I would never say such a thing about my husband.
But it turns out that watching your spouse die is kinda like having kids: everything is easy until you do it. Once you’re doing it, things are not how you imagined. Just like everyone is the perfect parent before they have kids, everyone is the perfect spouse before caring for their dying partner.
I didn’t feel trapped in hell when Jeff was dying. Most days, I was exhausted. I knew my life was consumed by Jeff and his cancer. Everyone made a true effort to take care of me, and to make sure I had time to take care of myself. We all tried to do that for each other. But there were days when I’d close my bedroom door, and Jeff was sleeping downstairs in the overstuffed chair.
And I was relieved.
Jeff made an effort to sleep in our bed, but eventually, I secretly hoped he wouldn’t. Having him right next to me was consuming, and I never slept well. I needed to close that door and feel some separation from cancer. I knew that Jeff didn’t have the same luxury: he couldn’t close the door on his disease. But I could. So I never asked him to leave.
Because it’s one of those things you’re not supposed to say.
Jeff sensed my hesitation sometimes. Especially when he couldn’t walk unassisted. I have a specific memory of driving him to get his hair cut. We were figuring out if I should drop him off, and then park the car; or if I should put on the flashers and help him walk in with his walker; or if I should park the car, and we could manage the whole thing together. But Jeff misinterpreted my hesitation.
“Are you embarrassed of me?” he asked, clearly hurt.
“No! Of course not!” I insisted, horrified that I had made him feel that way.
And I wasn’t embarrassed of him. Not even a little bit. I felt awful for him, and privileged that I got to be with him. I wanted to help him.
But the hesitation he sensed was the small part of me that wanted him to be like he was. I wanted to pull the car up to the curb, have him jump out, and walk into the building without needing me so much. Or – better yet – I wanted him to drop me off, like all of the years I had known him, and have him take care of me for a minute.
But I couldn’t say that. Because there are some things you’re not supposed to say.
I probably also shouldn’t say that it’s merciful that Jeff only lived eight months after his diagnosis. I should say that I wished we had more time — and I do. But the thought of that haunts me on one level: what kind of pain would Jeff have been in? What kind of life would that have been for him? And on another level, the thought of it makes me feel the potential of what that other caregiver said: that I would grow to resent Jeff, his disease, his neediness, and feel like I was trapped in my own hell.
Once Jeff had his biliary drain, his process for showering was insufferable. The whole experience took about 30 minutes. We’d layer – like roof shingles – layers of Tegaderm and tape. And anyone who knew Jeff would not be shocked to hear that he was incredibly particular about how that Tegaderm was applied. Had Jeff not been sick, I would have easily said, “WELL, THEN YOU DO IT!” But you can’t say that to your husband who has a biliary drain and an incurable cancer. Because there are some things you’re not supposed to say.
So I took a deep breath — held back the eye roll — and said, “No problem. How would you like me to do it?” And in the meantime, I had a child yelling for me to wipe their butt and a timer going off downstairs in the kitchen. (All of that frustration was with the full awareness that – in Jeff’s world – he was facing the realities of mortality and spirituality and coming to terms with leaving the only world he ever consciously knew.)
Things got worse when Jeff got a PICC line after they had to remove his chemo port. Now, the shingled Tegaderm and plastic wrap had to go around his shoulder and somehow cover the enormous crevice between his emaciated collar and shoulder bones.
The thing that almost put me over the edge is that Jeff would start the shower immediately. He didn’t wait until we had starting taping or wrapping or covering. He’d walk in the bathroom; turn on the shower; and then rearrange whatever items I’d already gathered — the plastic and tape and coverings. Every time he did that, I wanted to scream, “OMIGOD! WHY ARE YOU TURNING ON THE WATER ALREADY?!”
But I never said a word. Because there are just some things you’re not supposed to say.
Jeff and I were great communicators before he got sick. I knew not to ask too many details about Jeff’s work day: not because he didn’t want to tell me, but because recounting all of the details hashed up all the emotions to go with them. I, however, wanted to tell Jeff every small detail about my work day. He would listen and ask clarifying questions. We knew how to have a fight; we knew how to have conversations about parenting, finances, and intimacy. We were good partners.
So when he got sick, and there were things we couldn’t or didn’t want to say anymore, I missed him. I missed Jeff. And I so badly just wanted to tell him everything.
After Jeff died, I met with the priest who said Jeff’s funeral mass. Barb and Randy came too. We had lots of questions about where Jeff was, and if he was with God, and what happens when you die… and most of all, how we know any of that to be true.
Toward the end of the meeting, I asked to meet with the priest alone. Barb and Randy stepped out. Once they did, I turned to the priest.
“I am not at all thinking about this now, but how would it work… if I got married again? What — would we all get to heaven when we die, and I’d look at one guy, and look at Jeff, and say, ‘So — this is weird… you two meeting each other!’?”
Asking the question felt like a betrayal of Jeff. But I had wondered it. I wondered it even before Jeff died, which also felt wrong.
“There is no marriage in heaven,” the priest said simply.
“What? What do you mean?” I asked, feeling slighted. I wanted there to be marriage in heaven. I wanted to still be married to Jeff, and to have each of us be the other’s person. I immediately felt desperate.
“Jeff has joined the communion of saints. There is no marriage in heaven because there isn’t need for one.”
And the words I said so many years ago echoed in my mind, “… ’til death do us part.”
The priest cited the Bible story about a widow who keeps getting remarried. In the Gospel of Matthew, Jesus says, “For when the dead rise, they won’t be married. They will be like the angels in heaven.”
And I thought, “NOOOO! I WANT TO BE MARRIED!”
But all I did was nod my head. Hearing that explanation left me feeling free and equally horrified.
I didn’t tell many people about that conversation. Everyone grieves differently, but I’m not sure that exempts every thought or action. My thoughts; the conversation; and my curiosity seemed to have a time stamp for some time in the future.
My aunt has asked me if I ever think about getting remarried. And the answer is that I do. But I know that’s not what I’m supposed to be doing right now. I am content with where I am and what I’m doing. My kids are the center of my life, and they should be. I have deeply involved friends who accept what I am capable of giving, and who make an effort to say in our lives. We have two families who care about us, and whom we care about deeply. And between our families and close friends, we have meaningful lives with lots of love.
“Yes, I think about it sometimes,” I said. “But I know I’m not supposed to be doing that right now. I am completely grossed out by the thought of going on a date.”
And then my aunt said, “When you can sit across the table from someone, and not wish that they were Jeff… that’s when you’ll know you’re ready.”
I long and ache for Jeff. I still sometimes resent guys my age, because I think they should’ve gotten cancer instead of Jeff. But if I could sit across the table from someone and appreciate them for them – and not ache to twist them into a version of Jeff – then that would tell me something. It would be like having two children: I didn’t love Jake any less when I had Kate; and I don’t expect Kate to be just like Jake. They’re their own people. There may be a time in my life where just the right person fits into what the kids and I already have going on. And if that’s the case, then I believe Jeff would’ve sent that person. And if we get to heaven, I don’t think it will be weird. I think it’ll be pretty simple.
I don’t often talk about this… because there are some things you’re just not supposed to say.
There are many things that I didn’t say because I wasn’t supposed to say them. And I’m glad I didn’t. I said them to someone – an aunt or a friend or family member – and that was enough. Jeff was dealing with his own realizations and loneliness and pain… I could certainly bite my tongue about him letting the shower run too long.
I loved Jeff with every cell in my body. I still do. I will love him for however long I have any sort of awareness of what love is. I used to look at him and be in awe that he chose me, and that I got to marry Jeff Thomas. And so, the things that really needed to be said — the things that you are supposed to say — were said during the 16 years that we knew each other.
I wonder what Jeff didn’t say. I wonder what he thought and felt and wondered, but never uttered anything about… because he knew there are just some things you’re not supposed to say.
A handful of times, Jeff paused and looked at me while he was sick.
“I’m so sorry,” he’d say.
“It’s okay — I don’t mind,” I’d say, thinking that he was talking about whatever I was doing: cooking or taping or wiping or cleaning.
But now, I think he was sorry for more than that. I think Jeff was apologizing for having cancer; for how stressful it was; for how we weren’t in the same world anymore. I think he was apologizing for the taping and the showering and the changing of biliary drains. And toward the end, I think he was apologizing for having to raise two children without him; for building a life together that I would have to experience alone; and for all of the future memories that he should be a part of… but now, would not.
All Jeff could muster was, “I’m sorry.” Because there are some things that you’re not supposed to say. But there are plenty of other things that are simply impossible to say at all.