Co-caregiving

Winter and the Future Moon

Sunday gratefuls: Sleep. Again. Still. Kate. Always. The sun. Also, always. A true divinity who gives life and warmth. God or goddess. My heart. Beating faithfully. My feet, meeting the ground, providing a stable base. My fingers, so familiar with this keyboard. My eyes. So much to see. My ears, even my left one who quit on me years ago. My tongue. My lungs. To whom I am sorry for having abused them in my youth. Even my now long gone prostate. You provided years of faithful service. All of it, working together, my body, my soul, my link to all.

Co-caregiving. Kate’s kind gesture on Friday night, taking me out for sushi, got the leetle gray matter going. Caregiving, as a word, has a one way dimension to it. I give Kate care. She receives it. And, that was the way I was looking at it up until Friday night. Of course, our love remains mutual and our partnership in our marriage, too. But the whole caregiving notion. Not so mutual. Not much of a partnership.

I buy, pick up and shelve the groceries. If there’s cooking, I do it. I fix breakfast often in the morning. I feed the dogs, take them to the groomers. I drive Kate to her doctor’s appointments. I call the insurance company, negotiate with the business office at Anova Cancer Care, see to the cars’ repair and maintenance. I do the laundry, pick up. Open boxes, move stuff from one place to another. And on and on.

And, I see none of it as a burden. None. Part of loving someone. Doing what’s needed. Always. That does not mean I don’t get taxed by it. I do, especially when I’m tired as I have been this week. I feel like I’m doing it alone.

I’m not. Kate is a co-caregiver. She supports me as I do these things with kind words, dinners out, understanding me when the stress boils over like it did last Tuesday. And, no, this is not a pretty papering over of a difficult situation. Her role is every bit as important. Mine has a large physical component to it which hers does not, but our mutual need for love and acceptance is key. Mutual.

This is, for me anyway, a paradigm shift. Caregiving is not one way; it’s mutual. If it’s not, the psychic load on both parties can get overwhelming. Being a passive recipient of care is difficult. Agency is one of the defining marks of our life. Until it isn’t. Not easy to bear its diminution, its outright loss. Shifting into new roles and maintaining them over a long period of time is also hard. There’s a learning curve. No bleach with the colored loads. Don’t forget toilet paper and napkins. About four minutes a side for thick ribeyes, but pay close attention.

Love picks up the burden and makes it a joy, a gift. We’re doing what we need to do for each other, just with a different mix of roles and responsibilities. The more physical caregiving cannot be shared, that’s the whole point; but the stress and the constancy of it can. A hug here. A kiss. A thank you. Helping the other to see when matters get too hard, when the stress nears its worst. How important? Critical. Necessary.

Co-caregiving. Of course there will be caregiving situations where this is not a realistic expectation: dementia, a chronic illness with constant pain, mental illness; but, in the majority of the ones I’ve known, co-caregiving is not only possible, it’s necessary.

Someone less thick than me might have come to this insight a year ago, two years ago even. There is, though, an element of shock, displacement, dislocation that goes with a partner’s sudden serious decline. That shock, if the illness or need continues, can turn to grief over what was, fear for what might be. I’ve experienced all of this over the last couple of years.

The shock and the grief have their own needs, often, at least in my case, obscuring insight. And, of course, the shock and grief applies to the ill partner, too. They’re having to adjust to a life much, much different than their normal one. The mutuality of the shock and grief, different, yes, but strong and demanding for both, can also obscure insight into what’s needed, what’s going on.

We’re two years plus into Kate’s Sjogren’s problems which saw her lose weight down to 77 pounds. She couldn’t eat enough to sustain herself. We’re sixteen months away from her bleed which saw a cascade of procedures, treatments, diagnoses, doctor’s visits. Lung disease and a blocked artery to her mesentery slowed her recovery. She’s better now, but far from well.

My radiation is long past. The Lupron continues. My COPD has proved manageable. I’m calm about my situation, believing I’m cured, but still uncertain. Summertime.

Things have quieted down enough, the shock and the grief mostly in the past, that we can see our situation more clearly. Co-caregiving is the result of that clarity.