Saturday, February 25, 2017

For the Love of Cocoons: an Open Letter on Metamorphoses and Shifting Caregiving Roles

On February 14th, after sixteen steady months of filling the role of 24/7 caregiver to my husband, I acknowledged reaching the point of physical and emotional burnout and placed Mr. PNU in the care of Beehive Homes for a 12-day respite period.

Before I initiated this break, my role as my husband's primary caregiver nearly broke me. Only, I was too overworked to notice how the all-encompassing the breakage. I'd stopped being myself; didn't feel as Bonnie does, barely acted as Bonnie does. I think when I first brought Mark home I recognized the onset of that dissolution, but then as I remained completely invested and focused in the goal of ensuring his personhood I lost track of the process of losing my own. I would like to be able to describe what it’s like to look in the mirror and not recognize the person looking back, but the dysphoria is unsteadying enough that there are no words. My husband, half of himself, absorbed all of me, and I willingly consented to giving what I had. 

The last sixteen months I’ve been acutely aware of our public visibility as we’ve moved through the process of stroke recovery, and I don’t regret sharing this journey. The cost, however, was constant second-guessing:

Was I doing well enough at the task? Did those watching think I should do it differently? Were our spectators as aware of my weaknesses as I was? Could I be more patient? Work harder? Be any more selfless than I already was? Was I being judged when I took time for myself? Were people genuine with me when they lauded the work I was doing? Why weren’t people helping more? Was I thanking those who did help enough? Could I be less critical of onlookers? Could I ever possibly live up to the expectations of the pedestal on which I was placed? Did I really even give a rat’s ass what outsiders thought? Were they right that we were being punished, or being taught a lesson? Did I believe in the God the believers around me embraced? Was God even there? Is there a soul, or as Mark is convinced, are we simply flesh, bone, and the electro-intensity of synaptic impulse? Were people interpreting our shifting faith as failing? Could I possibly think my way back through the problem-solving that took me first from my previously tenuous position in the mainstream of my faith community, to the outskirts of belief? Did I really want to go back into that maze? Did I even need the unfulfilling answers that the maze had attempted to provide? Did any of it matter anyway with the present pressing in on all sides? Perhaps that is what, if anything, I was supposed to learn, if in fact, this were a lesson in the first place. I’ve come to the conclusion I don’t need to know, and I’m certain I’ll be judged by onlookers for that. So be it. I’m not an angel. I love fiercely, but at the end of the day I take of my street clothes, lay in a bed, and fall asleep from less than celestial exhaustion. I believe in the glorious flash of now; it’s richness and possibility.

Someday, I may second-guess all of this under less public conditions. But you see what I mean. The last twenty-two months have not only been a significant transformation for my husband. I am wholly changed as well. I am wrung out from giving more than was in my physical and emotional bank account, and my credit is almost spent.

People, extended family and friends, express the desire to help often. I apologize for not knowing previously how to express what our needs were, or how we needed them met. I think that is why I have been reluctant to take a break sooner. Mark’s needs are many, and they are complicated. I knew how to do the tasks required and how to do them correctly and efficiently. I was so often frustrated in how tasks were done by others, and for good reason, that I retracted opportunities for others to help. I did it out of the best interest of my husband. His care demands exactness. I wasn’t willing to forfeit his safety and future health in order to let others participate. 

But since taking this break I have discovered one need that only our friends and family can meet, and I am going to ask it.

I met with Mark’s New Choices case manager a week ago. She and I discussed options. It was though New Choices that I was provided with the help to bring Mark home from the nursing home in the first place. Medicaid’s waiver program pays for the in-home supports we’ve utilized so far: shower aides, CNAs to help with bedtime routine, adult daycare at assisted living centers and in-home attendant care for respite, transportation in the community, equipment, medications, and continued medical appointments. Each time the workload has become too heavy, we’ve re-evaluated and luckily there is always another avenue to help me keep going, more support. This visit we determined that Mark and I can benefit from extended serviced, and if the re-evaluation is approved on top of what we are already receiving we will qualify for meal service for Mark, five hours in-home Saturday respite supports, grants for in-home therapy and adaptive equipment, forty-two transportation stops a month, and thirty-five hours of weekly attendant care.

In short, I will be shifting the primary burden of caregiving onto aides. 

I’ve planned a weekly schedule for my husband and myself that looks something like the activities of an able-bodied couple. I’ll still be taking Mark to his co-teaching appointments on the campus of UVU. Philosophy has defined us since the beginning of our relationship. I deeply value our discussions kindled by Mark’s lecturing and teaching participation. As his colleagues continue to extend opportunity, I will continue to pursue supporting his personhood in the classroom. Otherwise, I’ve set aside Friday nights for dates, Saturday nights involving family in activities, and Sunday I will bear the full task of his care. We will participate in worship service wherever and whenever he sees fit. The last few months we’ve branched out in our religious observance, and it’s helped both of us relax into living our authentic sense faith and our individual pursuit of capital “T” truth. 

Compared to the weekly schedule before I took this respite break, this is almost its inverse. I had 15 hours’ break previously, and because of the all-encompassing nature of Mark’s care, whenever my “respite” hours came a vacuum opened up that the needs of my children quickly filled. I had little to no free time. A forty-five minute morning walk five times a week. I wasn’t sleeping through the night, because caregivers don’t sleep through the night. We get up two or three times to empty urinals, get drinks of water, adjust hospital beds and blankets. I will still man the nightshift, but during the day these changes will mean that I am my own person. 

And what shall I do with my time, my sudden freedom, the confrontation with a future’s possibility? Live. Keep my mental health. Love my children while I still have two at home. Love the three who do not. Bask in color and light, sound and texture. I will write and create and contribute a voice, which once I was lifted of the weight of Mark’s care sprung to life once again. I will walk the hills and valleys, get my hands dirty in the mud, and bring blossoms home from my wandering. I’ll find opportunities to teach and be taught. I’ll feast and fast, reach and read. I’ll pray and build altars to give thanks. I’ll care for broken things. I’ll breathe at a comfortable rate and let my blood pressure settle back down to normal. Most of all, I won’t apologize and I won’t make excuses for why I am living the life I lived before my husband was wrent in twain. I’ve walked through that veil, made passage. I’ve learned I cannot live as I was before. I can only continue to love and support my husband as he discovers meaning in his new life and how he will fill it. Those choices are up to him.

So to the point of my needs from family and friends: Accept with me that I am not married to the same person I was married to the morning of April 18, 2015. I lost him. He is gone. It’s not the same “Mark,” and I don’t know what a healthy marriage with this new Mark looks like yet. Accept with me that Mark has to accept that the “recovery” has happened for the most part. There may be another 2% of abilities that return in the years ahead. But where we are now is likely as far as he’ll come toward being the old “Mark.” Accept with me that this is hard and just as great a loss, if not more so for me than my husband. He is a burden that I must carry if I want the marriage to continue. Accept with me that the humanness of this predicament means the picture will never be perfect or fair. And accept with me that I do not have to do this perfectly, that you have no idea how to do what I’m doing, and that judging me isn’t anyone’s place but my own. Trust me, I do that. Accept that love doesn’t conquer all. Accept that my personhood is just as valuable and necessary to preserve as whatever is left of my husband’s. Accept that me living my own life, largely separate from Mark is the best thing for him, for me, for my children. And accept the fact that it’s alright for me to come down off the pedestal and join everyone else.

I make mistakes every day. I need to be able to get messy in order to live right. The figuring out is the art we make of life. I love hard and deep, and I have a big enough heart for all the world if they’d have me. But I am an artist to my core, and I’m in the middle of one of the most intimidating canvases there is. 

Thank you all. Thank you, for your love, encouragement, cheering, and support. Thank you for your goodness and your roughness, your willingness to forgive, for the beautiful people you are both before and after you have found the door to my heart. I couldn’t have made it this far without you, without my redefinition of “family.” I am so very fortunate. Blessed. Thank you for the many times you reassure me that I am, in fact, enough. Thank you for meeting my own chasm of needs. I look into your eyes and I am filled with all the universe has to offer in the way of deepest peace and grace.

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