Since I mentioned Lynne’s sleeping yesterday, I want to mention that she has embarked on a new regime of conducting her own personal hygiene regimes and doing it every day. Might not seem like much, but the war between her Huntington’s Disease and her medications makes this a major victory.
I remember the first day the State of Vermont paid me to take care of my partner, with her sometimes-mild-sometimes-totally-scary disability.
On the surface, nothing changed. For two years I had been doing these things because I love her and I want her to have the life I believe God wants her to have. That does not mean miracles, it means human relationship and basic work, reliably delivered, and fully made use of by the recipient.
But what a feeling to get paid! No more putting aside something vital at home for a few hours of minimum wage reimbursement and cheerful conversation with people who do not have Huntington’s Disease. No more walking back into the house exhausted and seeing everything I had left behind.. and now I’m too exhausted to do it
No more feeling guilty toward Macy’s, my former employer, for having to call out when she’s too sick, for showing up late after squeezing in just one more little task, for declining to cover a sudden opening that takes experience and skill, in a specialized department.
No more struggling to shoe-horn into my over-packed schedule the leisure and family activities that reward her for doing all the work she does to live at the unprecedented front curve of disease management she has achieved.
It was a happy day. I dressed in good clothes, just to clean, cook and shop. I’m old enough to remember ridiculing the 1950s tv moms who wore heels to run the vacuum. Now I knew how they felt: like them, I was lucky lucky lucky to be able to make a good house for the person I love.
I remember that feeling every time I encounter socially conservative families getting more and more hysterical about the rights of unborn children, the sanctity of pregnancy. Here’s the latest.
From my rarefied vantage point as a professional caregiver for a loved one, my heart goes out to those folks every time one of my lefty friends brings another such outrage to my attention. We used to talk about “dream interpretation.” Nowadays, I watch the news and work on the new art of “scream interpretation.” That’s what I’m working with here.
Scream interpretation tells me that all this talk about protecting children is less about abortion and more about mothers and fathers who worry about caring for their children. Today I walked past my local Roman Catholic church. My parents live in an affluent parish, and some of the young mothers were joyously planting flowers around the huge churchyard. Inside there was a class preparing for First Communion, but not one of these women was pregnant. They were slim and fashionable. The contraceptive ship has sailed.
So what’s all the screaming about? The hysteria about sanctity of life, about motherhood as a worthy mission? Even — bless you, Rick Santorum — about a father’s desire to cancel a day of campaigning for president to be with his wife and well children while the baby of the family fights for life?
I think these folks are actually wishing that they could feel the way I feel getting paid to take care of my partner. Sure the affluent young mothers can plant flowers on a Wednesday during school vacation. But most young families don’t have that kind of affluence anymore — or if they do, they’re not sure how long it will last. And every time they send a sick child to day care, every time they leave a 10 year old minding a 3 year old, every time they turn a sick infant over to a grandparent instead of sitting by the bed until the fever breaks — every time that happens, these young families feel insulted. They are being denied their American Dream, by a nation which no longer even offers a language to describe it.
Leadership on the left has to stand up for the language of paying for the job most women want most: caring for their family in times of need. Step one, of course, is calling out Rick Santorum on his hypocritical gambit of using Pennsylvania public school funds to pay tor his wife to provide homeschooling in Virginia. If that’s not a “mothering allowance,” I’d like to know what it is? And naturally, since some folks are dramatically overpaid in this nation, I’d put a solid ceiling above which you don’t get this cash.
This is all I can come up with, because most Americans, of any political stripe, have demonstrated their belief that more children — unplanned at best, unwanted at worst — are not what they really want. They prove this by using contraceptives. But so far, the right has given the only language of family sanctity tat most Americans have ever heard. And every time liberals rebut them with our own scream of fear, that women will be driven out of paid employment, the hearts of caregivers explode with the pain of having been misunderstood.
Our positions necessarily speak the hard truth that not every potential child will come to life. “You could choose which ones to kill, and keep some other,” we smile. And their hearts scream in agony: “I am killing them already every day! It’s in their eyes when I leave them at day care. It’s on my mind when I leave them unattended. I am killing them every time I’m not there to make a healthy meal, walk them to school instead of dropping them off. I am killing them every day — and I hate it.”
Other countries give their family caregivers several years of paid support for doing what all of us agree is hard and complicated work. Some of these countries are developed already, but others use this as a fast-track to development because kids who have parental nurture make better students, employees and citizens. I learned about this not in Europe, but in Singapore: it was part of the “Little Tiger” era.
In today’s political climate, talking about pay for caregivers has a civic benefit. Money is how we demonstrate that something has value, how we honor an action or output across different subcultures, languages, races, even state boundaries. This is not an issue of race, of “language spoken at home,” or “where your parents were born.” This is all of us saying to all good parents, “Your children are the future of my country.”
Unless I’m a total freak, I believe that paying other caregivers as I am paid will release huge waves of tension throughout our national body politic.
Teachers will be able to teach, knowing they there is someone to help with homework, meals, routinized scheduling.
Employers in the larger economy will be able to pay those who serve or produce their product in accord with what that product or service can put back in the cash register.
Public safety officers will have allies to help implement corrections or protections that take care of our most vulnerable.
Why should taxpayers foot the bill? We pay everyone who takes care of our country: the soldiers, the law enforcement officers, the inspectors, the infrastructure builders, the teachers. And yet, who does more for our country, for any of its component parts, than parents who have the time and resources to take care of our families?
That’s how I felt the first day I got paid. I want that feeling for everyone who’s doing the work of child-raising and elder-caring.
Medical science has reduced the burden of Lynne’s Huntington’s Disease expressions when she’s awake and active. One medication lets her sit still, stand with balance, walk freely, etc. This is more than cosmetic, as muscle spasms in throat and heart are major killers in the HD collection. Other meds manage the anxiety and depression which still sends so many folks suffering with HD into isolation or suicide. And a return of capabilities further lessens these negative tendencies. All of this gives joy to those who love a person with HD, and hope to the families who know it inhabits their genetic profile.
But a heavy medication life means lots of extra sleep. When she’s up and doing, her body is a war zone between the disease on the one hand, and her intentions and her medication allies on the other. For the first year, she chose the “one quality event a day” pattern, but lately, she’s been pushing herself to stay awake all day on days which have scheduled quality time. That means on other days she sleeps around the clock.
It’s easier for me to do other things on days of getting up and taking naps. These days when she sleeps all day scare the hell out of me. My intellect observes that this is high quality sleep, with lots of deep stillness. What a joyful experience for her body, to be free of the chorea. She is putting weight back on after last year’s crisis, and one reason insurance buys the incredibly expensive anti-chorea medication is precisely this, to let the body absorb more calories than it burns. Spiraling weight-loss is another way HD kills, and it turns out to be a side-effect of the chorea, rather than part of the digestive tract anomalies, what a boon.
But as good as this deep sleep is for her, it scares the hell out of my loving heart. All day long I hover nearby, searching compulsively for the expansion and contraction of life in and out of her beautiful torso. At the depths of her stillness, I sneek little pulse-checks on her outstretched wrist, as lightly as my anxious fingers can manage.
This anxiety completely saps my ability to focus on reflective writing and ministry when she’s sleeping. There, I’ve said it. Am I sharing the joy of her body’s good day of healing? Yes. Am I unable to delegate my hopes to the bottles rattling through that drawer of her dresser and head comfortably for my computer? Yes again.
These are contradictory impulses that totally rule whole days of my life, week after week. And I can’t even figure out what kind of goal I should have for resolving the tension.
It’s been a busy few weeks for us. Lynne, my roommate, who has Huntington’s Disease, has needed extra time and attention dealing with some issues in the house. A disease like Huntington’s tangles the medical and the spiritual in a giant knot. If we’re lucky, it remains a loose tangle, like too much yarn coming out of a knitting bag, and doesn’t tighten up like one of those necklace chains which take forever to even pull apart with a pair of tweezers.
So we were fortunate, running from doctor to doctor, bringing in some new and effective medication, working out some coping techniques. And why were we able to do this, so quickly, living, as we do, without any real income? It’s because we live in Vermont, that terrifying socialist nightmare that the new Congress wants to avoid at all costs. The amount of money they are willing to spend to fight it off shows how much money they stand to lose by taking profiteering out of situations like ours.
But nevermind that now. What’s done is done. And what I want to share is how it felt to deal with the increased paperwork that is what we pay for living in this paradise of medical socialism.
I was never good at math, and if I didn’t have Ritalin, all the same terrors would still apply. Mistakes in simple arithmetic. Copying the wrong number. Misinterpreting directions, if I even managed to read through them at all. Even finding the records, from taxes and banks and savings accounts, from which the information must be gathered.
Happily, Lynne’s family gathered around. Her sister the accountant came over from Maine. Her mother hosted a paperwork work party where her senior living community more often sits for Bingo or Scrabble or bridge. Her local sister and brother-in-law hosted Lynne in their beautiful country home, giving both of us some time apart, to unwind and rebuild confidence in her capacities.
But in the end, it came down to me, filling in the forms to ask Vermont to fund me as Lynne’s Essential Person, a friend, relative or spouse who is cheaper than a nursing home for someone who needs daily assistance. My fear is that, if it doesn’t work, I’ll be ground into dust running back and forth between a retail job for cash flow, pick-up work in ministry for my soul, and this lava flow of housework that appears as we age and grow infirm, first Lynne and then myself (hopefully in that order). Best of all, said sister and one of her daughters came up and did some of the cleaning we keep putting off up here!
But we know how lucky we are to live here, where the state chooses to maintain families and households — defined however our hearts choose and our luck determines — for as long as our bodies can carry our spirits.
And so, my prayer begins with thanks.
Yes, it’s scary to stand financially naked, but the state has made a firm commitment to keep us clothed and sheltered once we display our frailty.
I give thanks also for the friendly professionals who staff the part of our government that supports families, elders, children and the disabled. They don’t just ask us for our information, they ask us how we’re doing. They send letters asking us to call and make corrections, when we make mistakes on our paperwork. They’ve bridged me over with health care while I sort out my math.
Yes, sometimes they’ve called to say I’ve asked for too much. But they always explain it clearly, and it’s never held against me. It doesn’t take me out of the system, as a late payment to a creditor would do.
I give thanks for the wonderful filing tools I’ve developed to keep this all in one place: the plastic file folders from Staples, with separate swing-out pocket sheets where each form — photocopied for future reference — sits readily available; the binders that come from second-hand stores for less than the cost of a parking meter. I give thanks that Lynne remains hardwired for clear, simple organization, casting an aura of clarity through my living space, modeling what my mind can become if I remember to take my daily Ritalin.
I give thanks for the health center nurse who spent half an hour sorting out the funding and resupply of the anti-nausea medication which is calming Lynne’s stomach and helping us fight Huntington’s pernicious weight loss.
I give thanks for the medical center admin staffs, who are deferring all billing while Medicaid sorts out whatever is holding up so many cards.
I give thanks for a place where neighbors, regardless of political beliefs, acknowledge that life is better when we look out for each other, n our streets and in our government.
May everyone be so blessed.
And may our funding come through, so I can devote myself to this little life we’ve chosen here, on the shores of Lake Champlain.