I remember so clearly the night my husband had his first focal seizure. We were sitting in the den, each of us reading quietly, and I asked him a casual question. I looked up to his silence and found him with a shocked look on his face, moving his mouth and jaws but unable to answer my question. I instantly grew concerned and realized something was going on. Something medical. Something bad. “Can you talk?” He shook his head no. “Can you move around?” He stood up to show me. “Move your right arm. Move your left arm. Move your legs.” He could still move all the parts of his body, both sides, but he couldn’t TALK.” After a couple of minutes words started to come back. Slowly. The right side of his body was tingling, and the right side of his face was numb. Soon we headed to the emergency room. I parked the car, while he walked in under his own power and said “I think I just had a mild stroke.”
If you ever want quick attention in the emergency room, present yourself with stroke symptoms. By the time I parked the car, I was joining him back in triage where he was being whisked into a bed. He was promptly whisked in for a CT scan and after that we promptly saw the doctor. There was a visible lesion on his brain. Next, he was promptly admitted to the hospital that night and given all the appropriate medications for a person who had had a stroke. The next three days were spent with a team of doctors trying to figure out WHY he’d had a stroke, because he was not at all the typical stroke patient, being young and fit and thin with zero blockages in any of his veins or arteries anywhere in his body. One doctor on the team saw things differently: Not a stroke, but a possible brain tumor.
It all started on September 30th. Between then, and the day before Thanksgiving, he was in the hospital those first three days, had numerous appointments, MRIs and eventually a biopsy surgery. The day before Thanksgiving we got the diagnosis that he had Glioblastoma Multiforme, terminal brain cancer, and that there was no cure, just treatment. He would be a cancer patient for the rest of his short life. He was going to die.
I spent Thanksgiving Day alternating between food, and weeping in my bedroom. Scrabble, and weeping in my bedroom. Pie, and weeping in my bedroom.
And I became the family grief bearer.
Because of the nature of his illness the tasks of caregiving crept up on me slowly, as he was not immediately disabled by his illness. Because of his seizure, I instantly became his driver, and the only driver in the family, so that was a big change which waxed and waned and waxed again throughout his cancer years relative to seizures and surgeries. Other tasks increased and fell on my shoulders as he got sicker, had surgeries, electrical field therapy treatments, and as he was constantly run down from his chemo and radiation, and then finally as he lay dying. Those nitty gritty tasks are perhaps for a separate story…. But at first the biggest burden that got dumped in my lap was an emotional burden. I became the grief bearer. And I was the person who helped my children with their anticipatory grief.
My sweet husband changed into grumpy sad angry distant husband. He wanted nothing to do with my grief. He would actively leave the room if I entered it. He avoided me. He worked. And I cried even harder because dammit, he was DYING and how could he reject me like this when all I am is just so very very sad that he is dying? I felt like I lost him twice or thrice: I lost him to the cancer. I lost him because he rejected my anticipatory grief, and then I lost him when he actually died. Now, of course as all things in life are messy, this was so very very messy too. We had our bad moments, but we also had our very good moments. We struggled and we tried, but as the caregiver spouse, I was on SUCH a different page from my dying husband.
It hurt him when I would look ahead and ask for his advice about what I should do after he died. I wanted his advice because I wouldn’t have it for much longer! But perhaps I was asking too much, for in wanting his advice about what I should do after he was gone, he felt like I was wishing him away. In actuality I was trying hard to cling to every last scrap of him that he could give me before he vanished away from me. It was so hard.
Becoming the grief bearer meant we were living in two different universes from one another. His focus was on fighting as hard as he could, living as long as he could, and using his diminishing energy resources as well as he could for as long as possible. His focus became his job and the way that he showed love to us, his family, was by working. He didn’t have a lot of energy and it ALL went to his job. He would get back to work within two or three weeks of each of his brain surgeries, absolutely insisting to his surgeon to give him clearance, even though he was having to re-learn how to speak, code and type each time. I believe now that his active rejection of the grief process and his active embrace of denial was absolutely the only way he could cope. I have come to see his choosing to focus on work for the love that it was. In so doing, he provided for us then and now. But at the time, it felt really really bad. It felt like I was left alone with my grief, and on an emotional level it felt like he was already gone.
He grieved too, don’t get me wrong, but mostly he embraced denial as hard as he possibly could up until about three months before he died. And this, I think now, was necessary at the time. He was the fighter and I was the grief bearer. That was a necessary division of labor which enabled him to fight longer and harder than he otherwise could have fought.
And I wonder if this idea of being a grief bearer would be helpful to someone else whose spouse is dying. Perhaps this is one fundamental element of spousal caregiving in a terminal situation that we need to talk about. Because caregiving, although a very physical and practical thing, also has emotional and spiritual elements.
At the very end of his life, when words were failing him and he was slipping in and out of coma sleep, he handed me his prayer rope and said “pray for me”. I knew he didn’t mean I should pray to God about him, but that I should use my body and my words to pray in his stead as his agent because he simply could not.
And that is what a grief bearer does, too: I grieved for him…both for the coming loss of him, but also in his stead as his agent, because he could not.
I can only see this in retrospect. So I hope that sharing this idea helps someone.
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