“I guess I’m being so serious because the situation is serious. You are taking on the caregiver position for a man who has only months to live, and there are ramifications of that which transcend the usual image of caring for someone ill.”
“All I said was that I didn’t want to join some drama club of people who didn’t know much more than I did. I don’t go in for groups or committees –whatever.” My wife was conversing with my primary care provider; I’d been given an appointment for a control examination. They would poke, prod, scan and xray me six ways from sundown now so they might better identify the damage the cancer was sure to create. Create. Now that was a malaprop because cancer creates nothing, it destroys. “As it is, I take care of my mother. She’s aged and suffering advanced dementia so it’s not like I’m inexperienced. I’ve taken care of my mother for almost a decade now.”
“And I’m certain that gives you a clear view of the mechanical aspects of the care. But this is a different situation and that must be recognized. See, your job is to provide emotional comfort as well as changing sheets or giving baths. Emotional support maybe I shoulda said. No, comfort was best. Yeah. Look, your husband is in an emotional vacuum at the moment. He’s not only wrestling with some powerful chemotherapy –doxorubicin is tremendously hard on the body– but he’s also awash in thoughts about his circumstances. Have to be tough on a guy.”
“Yes, that doxo–stuff almost killed him. We got him to the hospital just in time to save him. That’s what the ER doctor said anyway. When he came home after the week he spent in the hospital he was so thin. Thin and sunken and gray. He sleeps and sleeps the most of the day. He’ll wake up and just lay there a long while before he will do anything. Then he turns on the TV or picks up his Kindle. But give it an hour or so and he’ll be asleep again. When I see him wake is when I will ask him if he wants food. Mostly he says no. Well, always does but sometimes I talk him into something.”
“Well, that’s kinda hitting around what I’m talking about. During those times he’s awake are the times he feels the greatest pain, suffers his most frightening thoughts, well, all of his thoughts, and in this time he will slowly withdraw if you let him.”
“Withdraw? How do you mean?”
“He’s written himself off. He had two separate doctors give him a six month prognosis. One of those doctors leads the field at the VA. Made a lot more believable by the way he feels, he believes that they’re right. All of the stuff he might look up on the Internet will simply compound and reinforce his demise. He was staged three plus-plus, and given the deterioration of bone, the number of osteo… lesions, and his monoclonal count from his biopsy all point to an extremely advanced case. So everything is telling this guy “you’re dead!” He’s gotta be whirling with the thought that he could die Jack in the Box style. The music suddenly stops and POP. Death is all over your husband like a shroud. It’s typical for people to pull into themselves in this situation when death is likely to take them by surprise. And, add to that the pain he experiences. Part of his exaggerated sleep is the body trying to repair itself, but some of it is, I think, the result of depression. I mean, the guy has every right to be depressed.”
“You make it sound so hopeless…”
“I didn’t mean to. I was trying to give you a graphic picture of your husband that showed the difference between him and your mother. By the way, I heard from your husband that she passed. My condolences. I’m sorry.”
“Thank you. But, why have you told me this? I appreciate it, but on some level I kind of knew these things. Nothing you said surprised me.”
“So that you will understand why you have to exploit his waking moments, and to encourage him to have more of them. You need to make his time awake as pleasant as you can. Talk to him about –you know, happy stuff. Tell him about the family and what’s going on. Even little details. Don’t drive him nuts, but enough to keep him feeling like he’s a part of things. Do what you can for his pain. Massage maybe. Keep him distracted. Maybe play a game, or just read to him. If he’s up to it, have sex. And don’t ask if he wants food. Bring it to him unasked. Keep lots of finger foods he likes at hand, and when he wakes up, bring him something. It is better anyway for him to eat multiple small meals than three large ones. We do need to get some weight on him, he’s only 112 pounds and he five foot eight. Don’t think so much nutrition and cholesterol. Think fatty food. If he’ll eat McDonalds, great. Encourage him to eat anything fattening, at least until he gets up to 150 or so. Then you can balance.”
My wife sobbed heavily, twice. “If he lives long enough.”
“He’s in treatment, and other than collateral from therapy, he’s strong. Keep in mind that a prognosis is a guess. Supposedly educated but guesses just the same. Personally, I’d have never given him a prognosis like that. I’d simply tell him I didn’t know. That would be the truth. At any rate, I wanted these moments to explain to you the differences bet– well, I wanted to offer some suggestions I thought would be helpful to you.”
I listened to this as I sat there with a blood pressure cuff squeezing my left bicep and an oximeter sheathing my right index finger. I really wanted to go to sleep, but I knew I would have to wait until we got back to the car. Then I could nap on the way home, and once there, burrow into my bed. Even though I heard the conversation, it somehow went in one ear and out the other. Like the noise from a vacuum cleaner or a distant fire siren, you hear it, recognize it, but it means nothing to you. I began to wonder why I didn’t care what was being said, and slowly came to it that I did care, I just couldn’t understand. Not being able to understand it, I dismissed it. Instead of spending any more time on my failure to eavesdrop, I began to think about the pain rising in my general waist and lower back area. Checking my watch, I saw that four hours –was it four? yeah, four hours since I took pain meds. They were wearing off.
One of the funny parts about the VA medical center involves pain control. They have no problem writing a prescription for 180 morphine tablets and a similar number for hydromorphone/dilaudid. But if your pain meds wear off while you’re at the hospital, they’re very resistant to providing you with a comforting dose to carry you till you got back to your own medicine chest. I tried to concentrate on the circumstance, but I couldn’t decide if it was humor, irony, or a problem. Or all of them. A stab of pain stopped my train of thought mid-synapse. I went back to feeling the pain level rise.
At last my wife pressed aside the curtain and came to take control of my wheelchair. “C’mon, honey. Let’s get you home.”
“Thank Christ.” I thought.