Occasionally I look at my husband and I tell him, "The hardest part of all of this is when I feel like I've lost my husband."
And inevitably he will say in return, "You haven't lost your husband."
At 9 a.m. I listened to a voicemail from Mr. PNU. "I can't cut my pancakes. Can you get here soon and help me?"
My eldest daughter, M—, graduated from high school last night. Festivities ran late. Because I never stop running between nursing home and the needs of my children, feeling well rested when I wake in the morning isn't an experience I can easily recall. This morning was no different. But I skipped a shower, slipped into clothing, washed my face and applied a fresh layer of deodorant to my pits, and drove the 1 1/2 miles to the nursing home by 9:30 a.m.
I encountered the second-floor kitchen aide as soon as I stepped from the elevator. He asked how I was, and I didn't hesitate to inform him. (I'm coming to accept the fact that tactlessness is the single most prevalent trait I inherited from my mother.)
"I drove across town to cut my husband's pancakes."
The aide followed me into Mr. PNU's room, where he watched as I spread the syrup and butter on the cold breakfast, and then used knife and fork with my two good hands to separate the pancake into manageable bites.
Excuses were: Indications on the delivery slip say my husband is supposed to be capable of cutting his food on his own even though the stroke has rendered his left arm useless. If he needs help, my husband should use the call light for the nurses station even though the stroke has stollen my husband's consistent cognitive capability to express his needs.
I stayed with my husband for the next four hours, aiding the nurse to change is brief twice, running errands for water, listening to his commentary of the Turner Classics Movie channel Memorial Day cinematic fare, trying to get a few winks of badly needed sleep in the bed next to him. At 1 p.m. the lunch tray arrived. I repositioned the bed to accommodate my husband with access to his bedside table, and I lifted the lid from his plate. Lasagna, garlic toast, fresh steamed green beans, a glass of milk, a glass of cranberry juice, and an oatmeal brownie. I asked if he needed it cut, and he said he could manage. He took one bite and pushed the meal away.
"How is it?" I asked.
"Isn't it good?"
"You try it and you tell me. Weren't you going to bring me a jalapeno bacon burger from JCW's today?"
I took a bite. I admit that at this point in the day I hadn't eaten breakfast and I was starving, but I thought the lasagna was delicious. For the last few days Mr. PNU has eaten less and less of his nursing home meals and has made requests for outside food to be brought in. After sampling the lunch I confronted him.
"I don't mean to make you feel bad by this, but we no longer have any income. It costs almost $14,000 a month to pay for your care here. The kids and I are reduced to using food stamps. This food isn't bad. You aren't going to be able to maintain your foodie habits and preferences while this is the case."
My husband appeared crestfallen, so I offered, "If I can eat your lunch I'll go pick up a burger from JCW. Does that work?"
He nodded and I scarfed down the lunch. Except the brownie and milk. My husband gobbled those down while I was working on the main dish. Then I left to cross town to the northeast for the burger. The car engine got hot on the way over to JCW and I swung in to Jiffy-Lube for a fluids check. I called my husband and told him that I would be delayed, but that I was hurrying the best I could.
"That's alright. I know you're doing your best. I can be patient," he said.
Forty-five minutes later I arrived back at the nursing home with burger, fries and Coke Zero as ordered. I rushed upstairs and found the aides preparing to shower my husband. They said they didn't mind waiting for a few while he ate and left me to set up his lunch. I unwrapped the burger, placed the fries next to it, and inserted the straw into the lid of the drink. Mr. PNU picked up the burger, looked at it, grunted, and put it back on the bedside table.
"I'm not hungry," he said. "I already ate my lunch, you know."
"No, you didn't. I ate it, and you asked me to get this for you."
"I know I did," he said and picked up the burger again. "I guess I'd better try to eat it so I'm not acting like a spoiled asshole."
"No, don't worry about it," I told him. I rewrapped the meal, placed it back in the bag, and excused myself without looking at him so he wouldn't see my tears. On the way out I told the nurse and her aides that they could go ahead with his shower.
I could go back tonight, but instead I'm giving myself an evening of self-care. Mr. PNU's daughter has spent the last three hours with him on her own, so he hasn't been left alone. But I'll be picking her up in ten minutes for a 7 p.m. viewing of Madmax. She agrees that taking the night off is best for me. I'm trying to allow myself to believe she is right.
Before the stroke, my husband would never have behaved as he has today, in a manner that's becoming more and more common. Before the stroke, he did everything to ensure that in our marriage we took equal share. Anymore, that can't be the case. He is almost completely dependent. Verbal. Cognizant. But very much like an infant in his needs. So although I haven't lost him, nor his love for me, I have lost the aspect of our relationship where he can build me up emotionally.
I remind myself constantly that what Traumatic Brain Injury has left in its wake is not the person my husband is, but this disability absolutely impairs his capacity to exhibit all of the personality traits of the man I married. In marriage, spouses and circumstances change, which is why we commonly vow to love for rich or for poor, in sickness and in health. I love my husband's remaining abilities, the things not lost: the warmth of his body, his presence in the world, his wit, his handsome charm. But although some days I find myself offering words of gratitude in prayer for what I'm learning from this challenge, I do not love this stroke. I do not love what it's robbed from me. I do not love what it's taken from my darling boy who lays in a bed, unable to feed, bathe, or otherwise care for himself. I do not love feeling helpless to my weakness on a day when I have very little to offer anyone and I feel guilty offering myself a break in order to provide myself with care.