Notes for the one doing the caring

Nobody ever asks the wife how she is holding up. This entry is for her, and for the daughter, and for the husband who has not slept properly in two years.

Kept by Sophia Williams, North Carolina

For about twenty years I let myself into other people's houses in the morning. I came for the person in the bed. But in nearly every house there was somebody else in the doorway of that room, in yesterday's shirt, holding a cup of coffee she had already warmed up twice.

A wife. A grown daughter who came by before work. A husband who hadn't slept properly in two years.

Nobody ever asked that person how she was holding up. Not the neighbors, not the family calling from three states away. Everybody asked how he was doing, and she was the one who had to pass along the answer.

So this entry is for her. And for you, if you are reading it at an hour when the house is finally quiet, because that is usually the only hour you get.

I'm no doctor, honey, and I never was. I'm a woman who sat in a lot of kitchens. But if there is one part of this I know, it's this part, the part nobody writes down.

3.1

The hardest chair

The hardest chair in the house

I have said this for years, and I believe it more now than when I started. The hardest chair in the house isn't the one the sick person sits in. It's the one right beside it.

The person who is unwell has a name for what is happening to him, or at least a set of appointments, and people who ask after him. When he has a bad week, everybody agrees it was a bad week, and somebody brings a casserole.

The one in the other chair has the laundry, the pharmacy, the insurance woman who puts her on hold, and a job of her own. When she has a bad week, it isn't a week anybody names. It's just Thursday.

And it is lonely in a way that surprises people. The one person you spend all your time with is the one person you cannot say any of this to.

So I learned where the true thing gets said. Out at the car, with the door half open and her keys in her hand. That is where a woman would tell me she was so tired she couldn't see straight, and that she felt terrible for saying it out loud. Then she would go back in and be fine again.

If you have ever walked somebody out to their car to say a thing you wouldn't say inside your own house, sugar, you are not the first. Not even this week.

3.2

The listening

Sleeping with one ear open

People who have never done it think the hard part is the lifting. It isn't. The hard part is that you never entirely go to sleep.

You learn the sound of your own house at night the way you once learned a baby's cry. You know the rhythm of his breathing through a wall. You doze, and some part of you stays on duty, counting. Then the rhythm changes and you are wide awake before you know why.

That is a kind of tired a full night doesn't fix, because you never quite went under. It builds over months. It makes you forgetful, and short tempered, and weepy in the grocery store over nothing.

And the ones who never complain are the ones that worried me most.

My own daddy was one of them. He smoked most of his life and tried to quit more times than I can count, God bless him. He never once said he couldn't manage the stairs. He would stop halfway up, make a show of hunting for something in his pocket, and carry on.

A person who doesn't complain does not have less to complain about. He has a rule about complaining. He tells the family he is fine because he doesn't want to be a burden, and he tells himself the same thing because the alternative is a conversation he isn't ready for.

So the noticing falls to you, because you are the only one in that house who is looking.

Then there is the part almost nobody says out loud. The guilt arrives uninvited. You snapped about the volume on the television and you have thought about it ever since. And at three in the morning your mind goes somewhere you never sent it, and does a little arithmetic about a future you have not asked for, and you lie there ashamed until the birds start up.

3.3

What to do with your hands

Something useful to do with your hands

A lot of the exhaustion is the helplessness. You would carry it for him if they let you, and instead you are standing in your own kitchen feeling like a spare part.

So here is the one job that is genuinely yours. You are the only person who sees him on an ordinary Tuesday.

The doctor gets fifteen minutes, twice a year, with a man who put on a clean shirt for the occasion. In that room he will sit up straight and say he is doing pretty good, and he is not lying. He is comparing himself to this morning. You are the only one holding last spring.

So put a little of last spring on paper. A pad by the phone, a note on your phone, the margin of the wall calendar. One line whenever something changes, with a date on it. Nothing that turns you into a nurse, because you're not one and neither am I.

The date something changed, and what it was. Three pillows instead of one. The downstairs bathroom. Two trips in with the groceries.
How far, and how many stops. "To the mailbox and back, resting once at the fence post" is a measure. "He gets winded" is not.
A cough still hanging around weeks later, and whether it sounds different than it did.
The nights he was up, and what got him up.
What he has quit doing altogether, even when he says he just doesn't feel like it anymore.

Then take the pad to the appointment. You don't have to contradict him in the room, and please don't, because that costs you something at home that is hard to get back. Settle it in the car on the way. Ask him what he wants said, and tell him what you intend to say. Then it is an appointment and not an ambush.

Say plainly what you noticed, then leave it there. What it means is for the doctor who knows his history to work out. That part was never yours.

3.4

Letting somebody in

Ask for a Tuesday, not for anything

"Let me know if you need anything." I have heard that sentence in every doorway in this state. People mean it kindly, and it almost never turns into an hour of help, because it hands the job back to you. Now you have to work out what you need, pick a person, and call and ask. In twenty years I never once saw a tired woman do that.

So don't leave it up to them. Ask for one specific thing at one specific time.

Could you sit with Daddy this Tuesday from two until four. Could you take the Wednesday pharmacy run, it's on your way. Could you watch the ballgame with him Sunday.

People can say yes to a Tuesday. Nobody can say yes to a fog. And most of them are relieved to be handed something, because they have been wanting to help and afraid of doing it wrong. Folks like being useful. They just don't like guessing.

Ask at the doctor's office too, while you are there, what exists for families and not only for patients. There is usually more help than families know about, and none of it comes looking.

And when your Tuesday comes, don't spend it at the pharmacy. Take the hour that is yours. Sit in the yard. Go get your hair done. Sit in a parking lot with a magazine if that is the only place nobody can reach you. It is not selfish, and it is not a day off from loving him. You are not being asked to run a race, friend. You are being asked to walk a long way, and nobody walks a long way without sitting down.

I'm no doctor, and nothing on this page is medical advice or a treatment for anything. What I know is that chair. If you are worried about the person you are caring for, that belongs in front of the doctor who knows the history, in your own plain words, and it is worth making the appointment sooner than feels polite. And if anybody ever thinks to ask how you are holding up, tell them the truth. Somebody should have asked a long time ago.