The road to hell and it's pretty intentions.
I'm in bed early again, this time drugged with both melatonin and a full milligram of Ativan. I usually ration these out of fear of addiction, but tonight, no holds barred.
Mr PNU tried to pull off another act of heroics, even more impressive than walking, and ended up flat on the ground with contusions on his left shoulder, elbow, and knee.
I arrived at the nursing home early afternoon with the intention of showering my husband. He'd called me early in the morning to say he'd gone to the PT gym on his own to do some standing therapy and some weightlifting. I'd asked him yesterday if he couldn't make a phone call to a family member for help with our recent $6,000 repayment fee, and he told me this morning he was feeling very worried about making the call. My husband has known anxiety as long as I have known mood instability. I know not to add to his stress, so I told him to let it go; I would deal with the matter. When I arrived at his room I found him in bed with his call light a brilliant glow.
"Do you need something?" I asked. Usually I can do anything he might need the aides for.
"I peed," he said. He's been working on calling for help to get on the commode when he needs toileting. The fact that he hadn't bothered this time surprised me.
"What have you done besides PT today? Read? Lumosity? Call people?" I asked, hoping to generate a conversation about how his day had been going to that moment.
He looked at me sheepishly and shook his head.
"Did you go to any of the activities?"
Again, he shook his head.
"What have you been doing all day?"
"Nothing," he admitted. "I've been waiting for you to get here."
I don't get on my husband's case often. He's been an absolute workhorse this week in the gym, always proactive and doing what he can to be independent. I've been open with him about feeling as though I'm wilting into a sort of slow emotional burnout, and this lack of activity "waiting for me to get there" came down hard.
"You have books, an iPad, a phone, a TV, you can get into your wheelchair at any time to visit other residents or go to activities. I'm worn down to exhaustion and you wait in bed all day for me to come and make life happen for you? Hun, how is that supposed to lighten my load? You say you want to help me any way you can, but you can't even make a simple phone call in our behalf."
"I was worried because it's not directly related to my medical costs."
I started bagging up his laundry, choosing my words carefully. "I was doing so much better before I met you, which isn't to say I'm not glad I did. But right now I'm suffering financially in a way that I wasn't before we got married."
He grew silent. I finished piling the urine and feces-stained clothing into the plastic bag, cinched it tight, and walked out. I cried all the way down the hall until an aide asked if I was alright, and then quickly pulled myself together. I hate appearing vulnerable to the aides. I'm supposed to be the poster-child for nursing home wives. When I got home I started the laundry and went back to bed for an hour until Mr. PNU lit up my phone. I let the voicemail answer it, and then listened to the message.
Hey. I did something stupid. I tried to come home, but my arm and leg fell off of my wheelchair in the parking lot and when I tried to pick them back up the chair fell over. I'm back inside now, and I think I'm fine, but the nurses will probably be calling you.
When I got back to the nursing home Mr. PNU was sitting in the wheelchair in his room, his elbow and knee scraped and bleeding. The apology was on his tongue as soon as he saw me.
"I'm sorry. I know that was stupid, but wanted to do something heroic. I wanted to come home. I made the phone call. Can you please hold me?"
I held his tense body in my arms, and he leaned his head against my shoulder.
"Do you want a shower?" I asked. He nodded.
As I soaped him up in the shower chair, gingerly dabbing at the wounds on his body, Mr. PNU explained that the fall had come during his second attempt. During the first, he'd been apprehended on the sidewalk by Joe, a friend of ours, who recognized that my husband shouldn't be out on his own. He wheeled Mr. PNU back to his room and my husband, as he does with all Melchizedek priesthood bearers, requested a blessing before Joe left. Our friend obliged. My husband told me that for the second time in a blessing he was advised not to worry about me, that I'd find my way on my own.
"But you tried to come home again?" I pressed.
"Yes. Almost immediately after Joe left. I'm sorry. I know it was stupid. I promise I won't try it again. I wanted so badly to help you."
"The small things you can do here help me far more than you coming home right now ever could," I gently told him. "And though these thing seem insignificant they build up over time so that you will be able to come home."
Then I told him a couple of stories about time I'd wandered somewhere farther than I should, because we all deserve to feel empathy, even when we make bad decisions. But I took note that even as Mr. PNU is advancing in his physical capabilities, cognitive deficits—impulsivity and lack of insight—are coming to light. Earlier this week, shortly after his first few steps with the walker, he began saying that coming home must be just around the corner. I'm teetering around the ethics of how to respond both compassionately and with realism. As soon as my husband is ready to come home, that's where I want him. But with two person assist in and out of bed, on and off of the toilet, we're still months from that goal, and being in the nursing home where he has daily access to physical therapy is ideal during the first year after stroke. So I try to help him focus on the successes he's had at the end of each day, instead of allowing him to measure himself against the mountain that still must be climbed. And I try to convince him that we have reason to be happy where we are, every day. That's part of the emotional wear on me; positive realism is not easy to conjure day after day.
After his shower I let him hold me for a long time in bed, even slipping off to sleep in his arms as he said our couple's prayer for the evening. I reminded myself that I need to cherish and be grateful for every single day we have together, and even toyed with the idea of staying there all night. But since the nurse was still conducting neuro-checks every half hour because Mr. PNU said he'd hit his head in the descent, I roused enough energy to drive the three miles of potholed road skirted on either side by havoc-strewn sidewalks through the seediest parts of town.