Thoughts on Caretaking and Being Taken Care Of

care taking

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A friend wrote to me recently about a friend of hers whose husband suffered a traumatic brain injury a few years ago. Her friend was struggling with the fact that she feels like she doesn’t get to “date” her husband anymore, that she is a caretaker only, and no longer really a wife, and that he’s no longer who he used to be emotionally, physically, mentally, and in other ways.

Here is my response, edited for privacy and language.

I cannot respond to your inquiry from anyplace other than my own experience, and that’s not a great place right now. It’s pretty frickin’ dark in here. I’ll try to answer your question, and forgive me if there’s a lot of useless junk about me in my response. Maybe I’ll just try to answer it and also share a lot about what it’s like being taken care of so you can help this friend understand her husband’s experience a little more.

Just came off another MS flareup with bladder and bowel issues that were the main problem, which will ruin anybody’s attitude. I’ll leave it at that, but it’s terrible. That’s even TMI for me, and I’m the one it happened to. Five days of steroid infusions seemed to clear it up for the most part.

 

So having said all that, I’ll take a crack at this. Please forgive whatever shortcomings are in this response that might seem obviously due to my own mess.

I tell aspiring therapists they should never work harder than their clients, and I wonder if this wife is working a lot harder than her husband. That is a waste of time.

I also wonder if her request is even reasonable to begin with. Christy can wish all she wants that we could date again, and sometimes we can, but some days it’s all I can do to relieve myself properly, get from point A to point B without breaking something, have a productive day at work — if I can work at all — and get back to my place on the couch at day’s end. This is not always true but there are days/weeks/months when I am, quite simply broken — emotionally, sexually, spiritually, physically — take your pick. There’s no way to soft pad that.

It’s not always brokenness in all ways at a time. Sometimes I am broken physically but my spirits are soaring. In fact it seems like no matter how I feel, on most days I love life more than most of the healthy people I know. And somehow my wife (and now my caretaker) must remain flexible, open to what I can and cannot do on any given day, even though I am usually not fully sure myself.

See what I’m getting at? This lady can say she’d love to date her husband all she wants, but if he’s not capable of doing that, being that person anymore, she needs to deal with reality. And I get how brutal reality can be and how bitter this cup can be to drink.

My next thought was how I was telling Christy the other day that every time I get sick, I tell myself, “Here we go — you’re still you. You’re still you. You’re still you.” Only in many ways I’m not for a while. I lose myself every time, so that almost every time I emerge from a flareup, I say to Christy, “Wow, I didn’t realize this, but I was really broken, really messed up.” She usually smiles and says, “I know honey. But now you’re back again!”

So we at least have that. Last night we had a nice dinner and I felt like we really connected. In this super dark place right now, that’s a big deal. But maybe this lady doesn’t even have moments like that, and if not, I feel for her. That’s very difficult.

When I was dx’d, I told Christy to run for her life. I said, “Get as far away from me as you can, because I know we said “sickness and health” and all, but this is some total BS right here, and you don’t have to ride this with me to the bottom.” Of course she wouldn’t even consider leaving.

I’m glad she stayed, for many reasons, but she’s probably the world’s greatest caretaker. She’s not sentimental like me, so whereas I get into bad space sometimes and say, “Wow, I’m falling part here Cupcake (I’ve called her that since she worked at a bakery 25 years ago and told a colleague if she could be any food in the world, she’d be a cupcake)” and she’ll say, “Yes sir, you are. But we’re going to do this together.” She refuses to let me get too self-indulgent and that’s probably a very good thing because my capacity for self-indulgence is endless. Whose isn’t, in their own way?

I know she would like some things to be different. Maybe a lot of things.

I know she wants me to work out more and try harder, and especially get more sleep and go to bed at a reasonable time. But I love nighttime, I feel like I come alive. It’s hard to go to bed at the time you’re feeling better than you’ve felt all day.

I know she wishes things for me, some which might be in my control and many that aren’t. And she has a right to! Some of those wishes are things I need to take to heart, others are fantasies that are probably never going to happen, and others are simply beyond my capabilities as I understand them, or beyond the effort I am willing to make. At least right now, maybe? And whether this woman’s husband ever articulates it or not, he knows what’s happening to him. He knows he’s not the same person anymore. He knows he has lost himself a lot of the time, and that she has lost him in many ways, and that his suffering is both for himself and for her. Of course she, also, is suffering for them both.

So is this a reasonable thing for her, for her to want to still be his lover, to date him, to be alive and sexual and passionate, to still be a wife? Certainly it’s okay to want and wish, but of course we both know we’re never going to get most of what we want and wish for. So where does she need to do the work of letting go? Probably with a lot, lot, lot of this terrible situation that is beyond her control and his.

It would be great if this lady’s husband went to a gym and got in better shape and was less depressed, and was more like the person he used to be. But he doesn’t, and he isn’t, and he may never be. Does she have a right to expect him to get in better shape? I don’t know. Even if she does, where does that right begin and end?

Something about being taken care of humbles you in a beautiful way, but it does that, first, by robbing you of all sense of personhood and dignity you have managed to cultivate over your lifetime. Granted, I have not yet faced the ultimate insult to my dignity — pooping all over myself — but it’s on the list of wonderful things I might reasonably expect to happen with this disease.

This is what it’s like, being taken care of, and I’m still not sure what Christy has a right to demand of me. And where those demands do and do not run both ways. We’ve never done this before, we’re improvising.

I’ll bet your friend, in her best efforts to take care of her husband, has inadvertently wounded him deeply, made him feel less-than or humiliated or patronized, etc. How could she not? How can you be this close to a broken human being, when you are broken in your own ways, and not wound them further? It’s impossible not to. And in his darkness, I’m sure he has hurt her deeply. It sucks, but in some ways, what I’ve just described is called “marriage.” Yes, these situations, your friend’s and mine, are unique, but not THAT unique.

So I don’t want to romanticize it, this being taken care of thing, and definitely not this care-taking thing. You learn so much, you grow so much, but it’s ugly, and you lose yourself, and no matter how much you say it’s not going to happen, your body and mind are pretty tightly tied together and you can’t help it. When your body (mind) betrays you, it messes with you on a level that’s simply impossible to explain. And then if, like me, you’re lucky enough to emerge from that a relatively whole person from time to time, you look back on that and think, “Who the hell was I?” And when you’re sick, you keep saying to yourself, “Remember what it’s like to be healthy, remember, remember.” And I can remember for a few days, at most. Then when I’m healthy again, I forget what it was like to be sick.” You know how women forget what childbirth actually feels like? I wonder if it’s similar.

I don’t know if this helps or not. I’m writing it through this haze, this cloak of darkness that still hangs over my family and over my own psyche. All I know is that I cannot do the work of separating this woman from my own issues, as they are overwhelming in some ways. And maybe that’s the best way to answer questions about care-taking anyway — with one’s own experience of being cared for, and one’s own experience with bearing witness to another as they care for you.

That’s the best I have right now. I hope you find something helpful in it.