Saturday, October 17, 2015

The second half of marriage

We've been married a year and two weeks. Twenty-six weeks have passed since we woke to life after stroke. Yesterday, he finally admitted to me that he's tired of the battle. 

We've weathered six months, two weeks of which he was nearly comatose, a nasty bought of pneumonia, two blood clots from deep vein thrombosis, depression and anxiety, and last weekend, a first grand mal seizure.

I'm tired too.

Fall brings shifts of light and temperature. My complaints about the low quality of care and lack of appropriate healing environment at the nursing home have found us in a new room several doors down from the noise of the nurses' station and the constant din of the adjacent resident's television in the old room. A radical turnover in administration at the nursing home dominated the last month of our lives. I'm still uncertain what spurred the resignation of the old administrator and head nurse, but the staff dynamic here at the nursing home has always been tense, and in the time since the resignations not much has changed. The new room is large, quiet, has a bed for each of us, and provides a lovely view of the mountains we used to hike together. But my husband still feels oddly out of place. Cared for because he provides a job for the able bodied, but not at home.

There are those aides and nurses for whom I'm deeply grateful. But I'm done with providing patience for those who do not care for my husband well.

I've spent hours on the phone and in various offices trying to get Mr. PNU cleared to come home. We're waiting for the city housing agency to make necessary ADA accommodations to our apartment, and for Medicaid to clear my husband for home care. In the meantime, I take him out of the nursing facility for hours at a time each day, provide him academic stimulation among colleagues guest-lecturing on campus at the Pie Tin, take him to therapy three times a week at Neuroworx, facilitate his participation in conferences, and help him to worship at temples. I shower him two days a week, and attempt to remedy the haphazard grooming of nursing home aides the other five. Even though our budget is laughable, I purchase him protein bars and shakes after therapy to keep his protein intake at levels Neuroworx has requested, and share hearty soups with him at the Pie Tin's library lunch counter after lectures in Religious Philosophy. We read and discuss class readings and passages from the Book of Mormon before we pray together each night.

Granted, there are hours that I spend away from my husband each day, resting, caring for my home and children, taking my own class. I'm not certain how full-time caregiving will look yet, and sometimes I wonder if I'm up to the task. But I'm weary of the stress of juggling life between the nursing home, my home, campus, and Neuroworx, and the constant frustration of having to do over the work of aides who seem more concerned in doing their jobs quickly than well. 

Mr. PNU tells me frequently that he's tired of life in the nursing home, and I remind him that coming home will not change anything as far as what he's able to do each day. That part of the responsibility is his. And that is where his weariness from the work of recovery comes into focus. 

Last night I read through a study of stroke recovery outcomes. It was the best I've encountered so far, as it takes into consideration the possibility of recovery gains beyond three, six, and even twelve months with appropriate rehabilitative resources. But it still clearly defines our present level of recovery as severe disability, and points out that after six months since the stroke there are certain elements of recovery hopes that we need to release. The left neglect is more than likely permanent. The lack of left-side proprioception (or the awareness of the body in space) is likely permanent. The use of his upper extremities is more than likely unrecoverable. We are not done fighting for more mobility, but even after hours and hours of therapy, and pushing through the odds to recover trunk strength and movement in his left leg, Mr. PNU is almost completely reliant on others to help him with activities of daily living. 

He's begun to refer to recovery as a years-long process, which means his insight into his disability is growing more clear. Ironically, this too is part of his recovery, and in a sad kind of way I'm glad to see him give up the belief that a fix is right around the corner, although it means that the very real prospect of years-long work sometimes overwhelms him. He hates it. He misses feeling like himself. He misses being able to wrap his left arm around me. He misses feeling like something more than a person to be pitied. He misses the mass of that right cortex and the nuance that it added to his life. 

In exchange, he's learning to be braver and to work harder than he ever thought he'd be required. I deeply wish this had not happened to him. But I'm proud of him. I love him. And it's okay with me that he has hard days, that he gets tired and expresses his weariness, and that, in order to provide him with quality of life for the duration of whatever remains of our trial, I chose in turn to sacrifice some of my own.

1 comment:

  1. You are a beautiful woman. You have a wonderful husband. I'm so glad you two have each other to hold and confide in each day. Stay strong!