Giving Care (Madeleine’s Notes)

I like to think that I function at a fairly high level—all things considered. What I mean by that is that it’s been three years since my husband was clearly unwell and not getting any better. It’s been over two years since he was tracheostomized and lost all ability to speak. It’s been more than a year since he became “locked in,” unable even to spell words using eye movements. It’s been more than six months since the church, for which he had worked faithfully for close to 40 years, dumped him into Medicare and left us without any home nursing services.

This is cast iron church policy. It’s uncontestable. Until January 1 of this year we had (through Aetna) 70 hours per week of skilled nursing support. Since January 1 we have had no help from the church whatever. Once they are certifiably disabled, Lutheran pastors are discarded into the Medicare system. End of story. No “Good Samaritans” at the Board of Pensions of the ELCA! Tending the disabled is incompatible with their concept of stewardship—being a “neighbor” be damned. (Luke 10:29 ff.) WWJD (What would Jesus do)? Why get the sick and the hurt off the books as fast as possible!

Nevertheless, I mostly do OK. I teach some, write some, enjoy the friends who have stuck by me, have wonderful support from family and am grateful for the financial support of a nationwide network of contacts. I am grateful that Gary looks good, loves me, lives well, isn’t in pain.

I think it’s easiest for all our supporters to appreciate the monumental physical job my husband’s care entails. His ventilator and circuits, his feeding tube, even the catheter that runs through his abdominal wall—these are obvious, visible. The strain of turning him every hour, of getting him out of bed, is easy to observe. The mysteries of bowel care and bedsores, the management of dozens of medications, the bathing and hair washing, shaving and mouth care, the detailed maintenance of all holes and the machines and the tubing may be harder to envision.

Small wonder the whole project is certified as acute care and something only an ICU can manage (if very badly) in a hospital. Still, I have never left Gary alone with the ICU staff, even at Cedars. They aren’t careful.

Some supporters have an idea of the intellectual and creative care I have sought to render. Convinced that Gary retains all his intellectual faculties, I encourage visitors. I download recordings for him to listen to on his IPod—newspapers and journals, lots of books and NPR shows. I look for movies and TV that he likes. I struggle to make sense of the Brainmaster technology and hook him up for hours every week—hoping against hope that he can learn to signal with brain waves and return to some sort of communication.

So, these are the hands-on things I do. There’s also scheduling and supervising the people I hire to help. There’s shopping for the dozens of supplies and the monumental bill paying.

I cope with all of this fairly competently. Make some mistakes and overlook some things, but basically cope. I have found a number of people to work for us who sincerely care and who understand the humanity of our situation.

What I find utterly draining, even devastating, is the call to explain the whole saga to some new person over the telephone. People who sincerely want to help often advise me to call somebody who “helps with hospice” or “the Jerry Lewis people.” Well-intentioned would-be advisors will suggest I try this agency or call that service. I have made many, many such calls. Every time I end up in despair. In tears. It takes a day just to bounce back. Often the people I reach pass me along to somebody else to whom I’m expected to tell my story. Or I get a voicemail and they call back at their convenience when my fingers are in my husband’s rectum. Nobody has helped at all. Why should I lose another day to despair?

Three times since January an agency has assured me they can help. A nurse comes to the house for an “assessment.” Many pages of questions—asked deadpan—include things like whether my husband enjoys gardening or whether he can climb stairs. Then it turns out their agency doesn’t handle patients on ventilators. But that is clearly his situation. It’s in all the documentation. I made it clear on the telephone.

After cutting off all support, the ultimate church lady, an RN who works for the ELCA Board of Pensions, sent me hundreds of names and numbers of nursing agencies who could help us. The list was totally useless. The help she offered was completely bogus. I made a couple of dozen calls only to realize how, cruelly, she had sent me on a fool’s errand. (Her help was like giving a treadmill, with much fanfare, to someone with no legs, promising a new life as a marathon runner.)

The same dame, three months later, sent along the name and number of a wonderful contact she was sure would be able to help. I called her wonderful contact, explained everything, cried on the phone. She was a very warm and compassionate person. She never got back to me at all!

Are these people wicked? Are they stupid?

To care is to give—time, money, concern. You cannot care thoughtlessly or idly. It takes effort. Sometimes terrible effort that hurts your back and wrenches your elbows and keeps you awake at night.

So many people report that they pray for us. Particularly, it seems, the people who never visit or call or email, never ask what they can do—these are the people who, when I run in to them at church, claim to be praying for us. It may be mean or it may be uncharitable, but I have come to suspect that “prayer” without “care” means nothing at all. To claim to be praying without caring is blasphemy.

And care is costly.

The lessons for a church that prays loudly and often for the sick and the hungry, the destitute and the dying, but is all too often locked into a “self-care” mindset, that avoids the “negative energy” of people who are suffering, that looks to justify its own neglect with myriad explanations and priorities.

The lessons of this life we are living are terrifying!

To pray for others is a serious responsibility. It commits you to care for them. If otherwise, if it’s just asking God to care, it’s idle and irresponsible.

Of course GOD cares!

I’m probably not supposed to post this. A former friend warned me that when I get angry I turn people who want to help away. Manifestly we want our victims uncritical and passive. We doubtless don’t want to hear that our prayers are blasphemous and that our claims to care are idle and irresponsible. On the other hand, I may, through this dire experience, have achieved something like a prophetic competence and perhaps those who have ears may hear something useful in my diatribe. I can always remove the post...

M