Caretaking the Caretakers

March 29, 2012 at 12:12 pm (Living, Living With Chronic Illness) (, , , , , , , , , )

Being a person with a chronic illness, I rely heavily on the love and kindness of people who, for whatever reason(s), offer me a great deal of consideration and help in order to make my life not just a liveable place, but also a worth-living place. Without these people, I would have problems with everything from eating to getting to doctor’s appointments to dealing with my emotional response to disability and beyond. It’s so much more than just making sure the Del-shell isn’t in imminent harm. It’s a complex and tiring job, even when distributed among several people.

I have a veritable cast of characters that keep the Del ship afloat. Recently, there are four people who do the brunt of the work:

  • Rave, who has taken on the bulk of the Del transport. She cleans my house, she packs me for events, she cooks meals, she handles my correspondence when I can’t, she knows more about my calendar than I do, and she is content to sit quietly at my bedside for hours just in case I might need something I can’t get on my own.
  • Fuego, who has, of her own volition, taken on the task of trying to find a nutritional approach to managing my pain and other symptoms. But beyond that, she has purchased food, offered emotional support, and been a tough cookie when I’ve needed it. She’s new to the cast, but she’s jumped in with both feet.
  • Winter. When all is lost and I can’t take another moment of life, it is Winter who talks me back into reality. I know I can reach out to him and be brutally honest with what’s going on inside my head, and he will lovingly listen and deconstruct, reframe and commiserate. And if nothing else, he’ll engage me in bitter gossip about people we love to gossip about, which always seems to make me feel a little better.

I try to do justice by these three (yes, there’s one more, be patient!) by engaging them only when I need, by thanking them and recognizing the work they do and making sure other people know about the work they do, and by offering them whatever I can in energetic or physical barter. I offer Rave shamanic and pastoral care counseling for free, as well as getting her into fun events for free; I talk to Fuego about things Fuego would probably rather keep personal for now, but also school her in Topping techniques that facilitate better relations with her partner; and I do a lot of reciprocal “being there” for Winter.

But there’s no argument from anyone in my life that the brunt of the work falls on my spouse and partner, Ninja. From dealing with all of the health insurance stuff, to making sure I have what I need to get through the days alone, to cuddling with me when I am sad or in pain, to being a boundary between me and the rest of the world when I need it, to headchecking me about waht my doctors tell me, and lots of little things in between, Ninja tries his hardest to be a loving, supportive partner to me. I know this is not what he thought he was getting when he married me, and in some ways I carry a lot of guilt around that. But he has never, not a moment, made my disability the focus of an argument. If anything he’s been the one asking me to slow down, to move slower, to think harder, before making a decision that may impact my health.

Ninja and I are not in the best place our relationship has ever been. It’s very personal to us, so I’m not going to share details about that. But I will say that even in all of this, in nary a moment has he withdrawn his support of me emotionally or physically. Even in the midst of a heated discussion, he will make sure to fill my CPAP at night and ask me how my pain is. I worry that some of why our relationship isn’t bright and shiny is because Ninja is burned out from being my caretaker.

He’s going to read that and think that this is somehow his fault, so I want to make it as clear as I can : Burnout is not a caretaker’s fault. I get burnout from my Work all the time, and it’s not my client’s fault. Burnout is a normal, human reaction to engaging our minds and our endocrine systems on high gear over a prolonged period of time. If every day is a potential emergency, our bodies try to stay at ALERT status all the time until finally, we reach the wall and fatigue sets in. A computer can only run for so long on a battery until it either has to spend some time in conservation mode or shut down completely.

What’s so difficult for people with chronic illness whose caretakers are also their romantic partners is that we desire to care for them as much, if not more, than they desire to care for us. We feel like we are takers, and our love desperately wants us to be givers as well. But I can’t do for him what he does for me. I can’t give him a weekend where I do all the cooking, take care of all the household chores, where I drive him everywhere and make accommodations for his comfort and well being. I can’t stop being sick and in pain long enough to do all the things my heart yearns to. There are days that I can’t even offer him the decency of a civil conversation, because talking will aggravate my symptoms or because I’m too tired.

There are ways that chronically ill people can care for their caretakers, but it comes with a very standard caretaking catch: the recipient has to accept the care, and see it for what it is, and take advantage of it. For example, I am often encouraging Ninja to spend the weekend away from home without me. Even when I explain to him that this is my attempt to give him “time off” from being my primary caretaker, and that it would mean a lot to me if he did this, and that I think it would do him a world of good, he frequently (if not always) refuses this. He feels his “job” is to be here with me, and even if he went away he’d be worried the whole time and feel guilty if something arose that needed his ministration. I don’t think this is unique to Ninja-as-caretaker, either. I think many caretakers would react the same way.

However, this is my plea, not just to Ninja, but to all people who are primary caretakers for someone who is chronically ill:

Please understand that the deep desire you hold to be there for us, to provide a supportive and loving environment for us free from as much suffering as possible is as strong for us as it is for you. There are very few things we may be able to do in order to fulfill this need the way we fulfill it for you, and so we ask that you be more open to accepting our care in the forms we can give it if at all possible. So if we encourage you to take time off, to pursue things that make you happy outside of our relationship(s) as lovers as well as caretakers, please accept this as you would have us accept a meal carefully prepared to our dietary specifications. See us making the financial sacrifices to allow for this getaway as a rose, carefully picked out and placed in a vase on the dinner tray. Envision us feeling warm and sated while knowing that you are doing something that makes you feel like a whole human being, the way you make us feel when you make sure we are comfortable in our own homes.

I’d love it if people could add suggestions of what chronically ill people can do to provide care for their caretakers in the comments.

Thank you, and you, and you...



  1. Eric S said,

    Well said. C went through this with me for a year well before you knew me. I see this elsewhere too and will use this in trying to help someone I know.

  2. Av said,

    This is a really hard one – while V and I were caretakers for his mother, through her increasing dementia and physical infirmity, we hit a point at which it was simply impossible to go … anywhere … without a pressing weight of stress; what was going to go wrong while we were away? What mess were we going to come home to? What tasks are we going to be catching up on for a week?

    One thing I have identified for myself – related to all my relationships, not just those where I’m a caretaker – is that when guilt or anxiety is fueling a conversation, it places a greater emotional cost on me. “I want to do X for you!” is great. if there’s a subtext of “because I feel guilty about Y”, then I end up defeated and uncomfortable before I can accept the gift or gesture. “Go away this weekend! take time for you! because I feel guilty, this is super important to me!” … yeah. I’d never manage to unwind. I’d just end up vaguely resentful that this thing that should have been me-time had become a symbol with extra weight on it.

    I know it’s a little hokey, but I think in a care/taker relationship, the ideas behind Gary Chapman’s Five Languages of Love become even more important; what’s your beloved’s language? Do they need physical touch? Words of gratitude? gifts? If you know what language touches them most, you’re more likely to succeed when you’ve got energy to out towards making an effort.

    • dying for a diagnosis said,

      I’m wrestling a lot with your second paragraph. Maybe the difficulty in translation is that when you are the caretaker for a parent or child, there’s a different dynamic between care/taker than when it is romantic partners.

      But even so, I think the issue I’m gritting on is caretaking as a guilt-fueled economy. I take care of someone because otherwise they would wither and die alone; when they attempt to offer me caretaking in exchange, it is because they feel guilty about being on the receiving end all the time. I think where I’d like to move is into a place where the care flows back and forth out of love and caring, rather than out of guilt. But I don’t honestly know if that’s possible in the situation of caring for a parent, especially if you feel like if you don’t do it, no one will.

      Maybe that’s the blessing I have that I’m not seeing; that Ninja *chooses* to be my caretaker, because he could just choose not to, and drop me off at my mother’s/sister’s place and tell them they’re stuck with me. (I’d actually rather be homeless, not because I don’t love them but my sister has enough on her plate without me as an added responsibility.)

      How would you suggest I encourage a caretaker to do something like take me-time without adding the guilt symbol to it?

  3. Fala said,

    Familiar territory. Thank you for posting this.

  4. Av said,

    I’m going to ramble a smidge, and see if it ties together at the end.

    one – I’ve identified this tendency in myself, outside of the parent/child dynamic. I have one able-bodied but high maintenance spouse and one high-maintenance, less-able spouse. When the less-able spouse takes something on as a cause, it “punches holes in my bucket” –
    “You (or we) should go do X!”
    “::stress-related nose-wrinkle:: meh. Lots of emotional start-up cost, I don’t have the capital to spend, bleh. flerf. ick.”
    “no, no! You (or we) should go! It’ll mean a lot to me!”
    “oh… maybe I’ll try.” followed by a half-hearted effort to scrape together the spiritual quarters to pay whatever tolls I’m going to find along the way.
    “You’re stalling! You should go! go! Do this!”
    “::splat:: bleh. no.”

    and so, finally, I’m cajoled into going, out of responsibility to Spouse B, and when it’s all said and done, I end up with only a few dregs of special left in the bottom of my metaphorical berry bucket, for no good reason. I honor her intention in pushing. I respect that she’s looking out for me. But it doesn’t help for it to be her cause.

    two, the ONLY fix I’ve found is communicating it clearly. “Stop. this is being a cause and I can’t handle that. Let me figure out if I have the energy for this before it becomes a Thing.” but it took me figuring out what was happening before we could sort that out.

    three, I feel like there’s a lesser form of agoraphobia that isn’t quite a phobia, but more a deeply seated discomfort related to scraping together spoons to go and be in the world when the situation at home is icky for any reason. Is it possible that “start up capital” is being part of the issue – he’s looking at the resources he has and not being quite sure they’ll stretch to cover being gone AND having half an ear open for what’s happening at home?

    four, we’ve made it one of my responsibilities to the household that I take care of me. Like, it’s an honest to gods chore on my task list. So, I DO pick weekends where it’s my job to us to dig in the couch cushions, find my motivation and go do something that’s vaguely uncomfortable because if I do, I’ll come home in a better state of mind. And more receptive to the positive stuff around me.

    It’s even better if whomever is still at home while I’m off (LARPing, visiting, lounging. whatever!) manages to do something that waters their soul. Then, I feel less like I’m abandoning my post the next time I’ve scheduled myself to be away.

    I honestly don’t know how much of htis applies, but something in your words about Ninja’s reaction spoke to me of the struggle I’ve had.

  5. Av said,


    The “sort of agoraphobia” actually turned into an issue that I had to hash out with a lot of very important people in my world.

    Sure, I -could- hop in the car and go to DC for the weekend to love on my sister or my DC boyz, or I could go up to CT and hang with a girlfriend, or accept an invitation to see a show, attend Passover, etc, etc, etc. A hundred things. all of which had the weight of “home isn’t well” pressing back on them. Before I could receive any gift of “please go. Spend the money and Just Go”, I had to figure out for myself that the wall of “home isn’t well” was worth pressing through. and sometimes I did/do and sometimes, it’s unfathomable. I might as well have been asking myself to fly without tools.

  6. Evil Voodoo Celt said,

    Even though it’s a different (and much less onerous) situation, I often am a caretaker for Stacia. It used to be more constant, but it is still always there. It took a long time for me to realize that she *wants and needs* me to care for myself, to do things that make me happy/refresh me/etc. w/o worrying (too much) about her- that this is part of the love and trust that we have built up, part of the “perfect love and perfect trust” that we swore to strive for when we were married. Even though I *have* realized it, I’m still working on the process of internalizing it and making it the basis from which I act.

    It goes hand-in-hand with forgiving myself for not being able to “fix” her. It may be that the impulse for self-neglect self-sacrifice in caregivers emanates from this- that terrible sense of failure one feels when a loved one is suffering and there is nothing, absolutely *nothing* one can do. When I talked to Stacia about this, and found out that it helped *her* if *I* was happy, that taking care of myself not only made myself a better caregiver but actually made her less miserable… it was like a door opening, just a crack, but light shone through nonetheless.

    I can talk with Ninja about this… but he’s a stubborn one. I hope it will help.

    Oh, and I know I’ve mentioned this book to others before:

    Do you have it? If not, this can be arranged…

  7. ladymandrake said,

    Thank you for posting this. I needed to see this.

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