"In Sickness and Health" might not have been said but was always implied

August 12, 2012 10:48 PM

He's sick and relying on me. I can't always be perfect in my responses or my inner most thoughts. Now what?

So my partner is fairly seriously ill, dealing with liver disease. Earlier this year, it seemed like we were 'playing it safe' by taking it seriously -- now, after ups and downs this year, we're back to 'expediting for transplant' (which, despite how it sounds, really just means that, since he's in the hospital for the third time in as many months, while they deal with the swelling and infection for which he was admitted him last week, they're doing as many of the tests as they can that would lead up to putting him on the transplant list, so, if as his other organs (namely: kidneys) can't keep up the stress, then we'll be as ready for the liver if one becomes available.

I'm not sure the details matter. What I'm trying to say is that it's a lot.

And though 90% of the time I feel like I'm dealing well with it, it's the type of situation where that 10% just feels too important to mess up, and I want to tackle it head on.

And most of it, I understand. I'm not entirely healthy either so have to take care of myself. Fortunately, everybody in my life understands that and if I need to take a breather and not be at the bedside 100% of the time, I've been able to get away with that. And if I don't always keep the best composure, that's okay too. I'm flawed and in some ways, in this situation, I'm trying to accept that I'm doing the best I can. So that takes care of about 8 of that 10%.

But question #1 remains: How can I deal with the fact that I'm not always going to be the best partner I want to be when so much feels like it's riding on me doing so?

The other 2% is harder to explain, but here's where I'm at with it.

"This isn't what I signed up for" is a phrase that keeps coming up, though not really from me. I mean, I realize that it's, for the most part, a true statement. But eventually, I think all partnerships that take some sort of traditional 21st century romantic model, whether or not they actually can/do get married, hinge on the 'for better or for worse.' And I never felt that we were any different. Still don't. But in his less strong moments, he'll say it aloud to me, and he either hints or tells me that I'm And I feel completely confident in telling him I'm not going anywhere, and that's that.

I realize that he's saying it because, in some part, he needs to know I feel differently, and I don't resent telling him that. But I do worry that I'm somehow not showing him this with my actions, and that this is causing him to feel this way.

We don't have a strong support network locally, but we do have great friends and family, and I, especially, am blessed with people who, when they check in on his health, also check in on my well being. And I always say I'm fine when I am, and if I'm not, there are those I can tell that to as well.

But the longer this goes on, strangers I meet through the hospital or acquaintances in my life who learn the details start to see me as "the put upon partner", and though a part of me appreciates people I don't really know treating me like I'm making a noble sacrifice, I feel like crap everytime it's mentioned. Like I'm some sort of fraud who can't quite live up to the standard they're setting.

For the most part, I do clear that bar, and, to be honest, I'm glad to do so. Taking care of him is something I've always been glad to do in anyway I can, and I've always felt like it was well worth it. In an odd way, this isn't even a new feeling because our whole relationship has always been, from an outsider's perspective, 'unbalanaced' as far as money or resources go. I'm the one who works full time and pays for most, if not all, expenses. (It's ireally surprising how easy for two people to live on one salary as easy as it is to live on two.) And though that part of the supposed bargain was that he 'kept the home', it's never really been that simple, and I've never wanted it to be or expected anything else from him than what he brought to the table. And now as that imbalance has become even more noticeable, I've been happy to pick up the slack. Just because I'm also doing what he used to do doesn't mean I want to be with him any less. That was never why I was willing to do what I did for him in the first place. Taking care of myself and him just feels right.

But the more I'm complemented for doing so, the more I come to resent it. Not him, mind you. Not even the situation. But it just feels so disingenuous. Because my only response is "of course, what else would I do."

But some days, some long days when I'm tired, and even some days when things seem to be going well, I'm pissed about the whole thing. Not loudly. Not entirely. But a part of me is sometimes pissed and wish it would all go away. And the more people complement my supposedly selfless acts and strength, the more I seem to focus on those (rare but non-zero) quiet times alone in my head when I just want to toss it all away and be done with it.

As I try to explain it now in words, I know those feelings aren't real. I think about a hope to walk away from it all and it's a totally fake wish. I can't imagine doing it in any real sense. Maybe I can imagine waking up with amnesia in a "Eternal Sunshine" type way -- only by forgetting his existence could I walk away from him now. But even those type of fantasies I don't think all the way through to any sort of end. I can't even imagine what that happy, easier life would be on the other side; I just occasionally wish I had it.

So, #2, how do you deal with your imperfect feelings when you're going through a rough time?

(Apologies and my appreciation if this was hard to understand yet you made the effort; I'm afraid if I don't post it now unedited, I'll wimp out and not do it at all tomorrow.)

posted by MCMikeNamara to human relations (31 answers total)

To address question #2, these are all completely normal feelings. You need people to talk to. Either a support group, therapy, or both, but a support group would really be good so you can see how everyone else in your situation is going through these experiences and dealing with these things. If you cannot find one through the doctor/social worker you talk to, try online.

You cannot be "the best", you can only do your best. And you clearly are doing that. So for question #1, it's not really clear why you need to change anything you're doing. Acceptance of the fact that you cannot be and do all things will be part of seeking help with question #2.

I'm not sure what you think is "riding on" you being the best partner, but your partner's ill health is not your fault, and you need to know that. Your inability to achieve perfection does not make him sicker. I hope you know that.
posted by treehorn+bunny at 11:23 PM on August 12, 2012 [3 favorites]

my only response is "of course, what else would I do."

That's the key sentence for me. My mother passed away when I was in my early teens and the number of friends and neighbours who complimented us for coping so well....it's not like you have a choice in these matters. You get up every day and get on with things as best you can, sometimes with help and sometimes without, always painfully aware that you'd much rather not be in the situation where you have to do these things in the first place and that nobody appreciates just how very thin the thread is by which you're hanging on.

You get over both your issues is by being nice to yourself. You are human and thus will never be perfect. And that's ok. Repeat as required. And no, you really didn't sign up for severe illness in your SO, that's just what happened. And it's ok not to be happy about that, to resent it. And it's ok to reassess if you want to and can continue to be supportive to your SO throughout this kind of experience. And even if you end up supporting your SO it is ok to resent the fact that you have to. Be kind to yourself and allow yourself to feel whatever you feel.
posted by koahiatamadl at 11:23 PM on August 12, 2012 [3 favorites]

the impression i got is that you don't have any reasons for supporting your partner - you just do it because that's what feels right. when people complement you for doing something you're not doing, it pisses you off and makes you want to rebel against it by going to the opposite extreme. that's natural. they're not doing anything weird or wrong, because they're just trying to support you, but it's not working for you. maybe stepping back a little from those triggering responses, a little bracketing and a little distancing might help. can you hear whatever they're saying and turn it in your mind into "this is how it's supposed to be, i'm here with you for the same reason you are - because it feels right. i have no idea how to say thins to you, so i'll make up something about admiring you, even though that puts an artificiality between us."

i guess besides that i would just offer the opinion that your imperfect feelings are just as "appropriate" (sarcastic quotes - appropriate's got nothing to do with it) as your seeing your partner through these experiences. they're exactly the same - you're doing what you feel is right, and it is what it is. when you beat yourself up about them, you're making the same mistake with yourself that you resent when other people do it to you in a 'positive" way - that is, putting a label on it and setting up a standard by which you can be measured, like a sale. i don't think you have to "deal" with your imperfect feelings. just have em, then say goodbye to em when they leave.
posted by facetious at 11:25 PM on August 12, 2012

When people compliment you on how you're handling this, they mean to express sympathy and praise. They're not really describing an ideal moral truth you're living up to or not, just that they feel for you. Their admiration doubtless includes a substantial allowance for troubling thoughts.

When you talk to yourself about it, you need to do the same: allow yourself reasonable sympathy for this not being what you signed up for; allow yourself a few escapist fantasies; allow yourself some praise for being awesome, in spite of the difficult thoughts you naturally have about it--maybe even because of them, since if this wasn't difficult, what would the praise mean then?

Forget commonplace moral narratives about selflessness being its own reward. The reality is it's hard and it sucks and ideally you'd never even have to. But you do it anyway, because it's the way you want the world to work.

And that's why you're awesome.
posted by Monsieur Caution at 11:30 PM on August 12, 2012 [3 favorites]

It's hard for me to put a response into words, but I think what you're doing is the hard part. It's easy to love someone who is healthy and not want to walk away. The care and love you are investing in your partner is a wonderful thing. And the other 2% of fear and doubt is so, so small. It would be present in anyone except for a saint. And it seems that when people recognize the hard work of caring for an ill partner, that is what you hear: the expectation that some private part of you won't feel scared, upset, and afraid...

It seems you're most worried that these thoughts are disloyal because they somehow aren't congruent with the rest of it... fighting the disease, being in this together. Well, they are. I'm sure that your partner is angry, sad, and upset. I'm sure he wants to walk away from this sickness. Maybe some of those feelings are spilling over onto you. Why wouldn't they? You share so much else.

Don't deal with this alone. Please talk to a trusted loved one or friend about this... there is nothing wrong with these feelings.
posted by kettleoffish at 11:31 PM on August 12, 2012

http://www.wellspouse.org/forums

You'll find a great group of people who will get it.
posted by luckynerd at 11:57 PM on August 12, 2012 [4 favorites]

I've never been in your situation, but I can imagine myself also resenting the compliments. The way that I look at it, the vast majority of people in the world are totally indifferent to your existence. The moments in your life when your words and actions matter so much to someone else are rare. In a certain kind of way, it is a privilege to play that role, and it would be nice if that could also be recognized.
posted by AlsoMike at 12:02 AM on August 13, 2012

Sometimes people suck. And we suck because with faced with emotions we don't like the feeling of - like grief, or fear, or jealousy, we respond by responding in some of the most unskillful, disingenous, self deluded and defensive ways.

I think that's what's going on with the people you talk to, who try to compliment you. Rather than saying - oh my god, what you are saying in terms of your day to day is so frightening to me - what helps you get through this, and here, I brought you some ready made meals and am totally willing to weed your lawn, just let me know.... - we deny of own fears and dread and then but our burden on the other person. - oh my gosh, you are such a saint, McMike, such a saint!

Great, now on top of all the other shit you've got to get done, you've got to carry sainthood too? Hecks no.

I think you see this for what I see this as - good intentioned, unskillful engaging, where people try to throw their fears/etc. onto you. Those aren't compliments. Those are people unconsciously lobbing their own fears onto you. When you see it coming, just realize the reason why it feels so uncomfortable is because it's not yours. See it forming from their mouths, see it flying over to you, imagine it bouncing off of your invisible force field, and smile and say, well, that's not how I feel, but thank you for your kind thoughts/words. Be empathetic, but set boundaries and find the people and things that you consider restorative. Because that burden they are unintentionally laying on you is depleting.

Other than that, would you consider reframing that thought that you have 'imperfect' thoughts? The goal here isn't perfection, but to endure, and live life as close as possible to your values, no matter what the hand you're dealt. Thinking - I'm not leaving, but I wish things were different than they are, or - Damnit - I'm tired of this shit - or whatever you're thinking isn't imperfect. It's perfectly human. You thinking whatever your thinking isn't going to make you leave. It doesn't make you anything other than a good partner whose mind is thinking the whole gamut of thoughts that are possible, because that's what minds do. And even if you did somehow find yourself in the car, bags packed, at every moment, you have a new moment to think about it again, and turn around if you feel that's best. It would be great if your partner could flat out say that sometimes they were afraid you were going to leave. And that you could say that sometimes you were afraid you were going to leave as well. But you haven't yet, and though you're beat, or cranky, or wish that someone was taking care of you, this is the hand you two have been dealt, and you want to try to face it together.

I guess I'm saying that I hope you continue to be compassionate towards yourself, your partner, and the people in your life who are unintentionally irritating the heck out of you. My mom says that everyone is usually doing the best that they can. It's not anywhere near perfect. But hopefully you don't also have to carry the burden of inauthenticity, of not letting yourself think what you think or feel what you feel. It's a thought. Or a feeling. Let it come. Let it be. Let it pass. Let it come back around again if it wants to. But don't burden yourself by judging it as imperfect, or anything at all. It's just a thought or a feeling. While the mind has a tendency to try to figure things out (Why can't I open this door? Why don't I try to turn the knob the other way? etc.) , you can't problem solve yourself out of a feeling. (Why am I feeling this? Why can't I feel differently? etc.). Just acknowledge what you think and feel and don't problem solve it.

I'll be sending good thoughts your way.
posted by anitanita at 1:15 AM on August 13, 2012 [8 favorites]

When you are in those troubled spots or people say those sort of things to you, realize this: someday someone else will be the "put upon party" and you will be the person depending on them. And when that happens, you will have a special sympathy for them based on having gone through this yourself.

Allow yourself the human moments of doubt. They don't appear to be affecting what appears to be a caring relationship that is going through the tough times of illness. When you have these feelings, acknowledge them while realizing you can survive them.
posted by Ironmouth at 1:58 AM on August 13, 2012

The world has also changed. What used to be the 'norm' as you say "for better or worse" has become so rare in our fragmented isolated lives that this acknowledgement of who you are (its not about what you're doing so much as who you are as a person) may also be highlighting this aspect of society today.

My mum was in the ICU once with a 50:50 prognosis and once she was released to a private room, I was the one sleeping on the floor to ensure the oxygen pipes and whatnot were always clear (this was not the first world fancy medical centres). My sister took to her bed with "the stress" and my Dad told me, when I complained about the imbalance, "Well, you're the strong one". I hated and resented that burden. But what else could I do?

That's the bottom line for you, what else can you do? And this gives you a strength of character (not nobility or whatnot) and integrity. The 10% you're asking about is your humanity, and here is a big squeezy hug for you.
posted by infini at 2:51 AM on August 13, 2012 [4 favorites]

my only response is "of course, what else would I do."

I think you need a few different responses to choose from here. I think that's really at the base of your question, because you're carrying their comment around with you after people say it. I like the suggestion that you imagine the comment going over your head, but I think you want a stockpile of responses that feel true for you.

Other people are better suited to come up with suggestions. But I'd start with "I'm not the first person who's been through this, and I won't be the last." This has the added bonus of reminding you that there are legions of people out there who 'get it'.

Or you could be cheeky "I'm looking forward to him returning the favor one day!" this has the added bonus of reminding people they they might be in similar straights.(frankly, I find the comment people make to be a way to distance themselves from you and him and a terrible situation -- like "you've got this, right? No need for me to hang out with all this uncertainty and pain, right?".

What would you really like to respond with? I'd be tempted to say "if one more person tells me how well I'm doing, I'm going to lose it!" carry that one with you too. Sometimes knowing you have the option is enough and you don't need to actually say it.

And stop being so damned polite.
posted by vitabellosi at 3:32 AM on August 13, 2012 [3 favorites]

Oh! And find a few responses to "not what you signed up for..."

Like "babe, I signed a blank contract so that I can also enjoy it when you become a millionaire." Or, "actually it is. No way I'd let that cute chick from your office be here for this. You see, it's got to be me --other women would be all over you if I stepped back! They're just waiting to pounce in here!"
posted by vitabellosi at 3:37 AM on August 13, 2012 [2 favorites]

But some days, some long days when I'm tired, and even some days when things seem to be going well, I'm pissed about the whole thing. Not loudly. Not entirely. But a part of me is sometimes pissed and wish it would all go away. And the more people complement my supposedly selfless acts and strength, the more I seem to focus on those (rare but non-zero) quiet times alone in my head when I just want to toss it all away and be done with it.

Everything you're going through and have articulated in your post, but especially this, I went through when my own partner became chronically ill (and, ultimately, died of it). Like you, I was the "working" partner and like you, from the start our relationship was not quite as equal as it was supposed to be, as she had made clear from the first time it really became serious that she had health problems. When those problems became acute and ultimately, unsolvable, there were times I felt the exact same thing, the desire to run away, to not have been in this relationship.

It's okay to be angry with this.

But question #1 remains: How can I deal with the fact that I'm not always going to be the best partner I want to be when so much feels like it's riding on me doing so?

Guilt is a natural consequence of love in this situation. You've gone from being the stronger partner, the "protector" into a situation in which you are no longer in control: no matter how strong you are, his life is in the hands of strangers, which only puts more pressure on you to be strong in those situations that you can still control.

The only thing that can help you with this is to gain the wisdom to accept this, which is hard, but it can also help to distract yourself from thinking about it too much, from dwelling on things you cannot control.

So, #2, how do you deal with your imperfect feelings when you're going through a rough time?

I think my lowest points were when Sandra was in a coma for several weeks, lying in intensive care. That's when I really felt guilt and fear and anger and pain. So I read a lot of comics and blogged about it, all just to not have to think too much.

For me, talking about these feelings didn't work because they only validated them, made them stronger; pure victorian repression was much better. Obsessing about pop culture or sports or whatever helps a lot to keep the demons at bay.

"This isn't what I signed up for"

He's not saying this because he's been worried that you won't be there for him, he says that because he feels guilty about needing you this much, when you deserve happiness and a healthy partner who can support you.

Always remember that you're not a saint, or a hero, you're just a decent human being who does what needs doing and as with every other chore, some days you can do it better than others and there's nothing wrong with that.

Good luck, my best wishes and thoughts are with you.
posted by MartinWisse at 3:41 AM on August 13, 2012 [6 favorites]

The hospital social worker should be a source of information for you about support groups.
posted by Carol Anne at 4:58 AM on August 13, 2012

Recently, I found myself in the same situation. Lots of misunderstandings, guilt, resentment, wrong tone of voice, barked commands and terse responses on both the well and sick side of the situation. I finally sent this in an email and that cleared the air for everyone but especially for me:

No matter how sick you are, I still have the right to have bad/grumpy/impatient days, the right to say stupid things and then apologize, the right to disagree with you, the right to be stubbornly wrong, the right to want a few things on my side of the ledger, the right to be upset about things that you think are silly and trivial.

Would you give up all of that if our places were switched? Would you always be sunny-minded and always say the right thing all the time?

I love you and really truly fear having to live without you and I hope that day never comes. I really, really hope the day never comes when I don't have you in my life and around me daily. But sometimes my actions and words seem to belie that.

posted by loosemouth at 5:20 AM on August 13, 2012 [4 favorites]

So, #2, how do you deal with your imperfect feelings when you're going through a rough time?

I think your feelings are inevitably going to seem imperfect in a situation where there is so much contradiction. A friend said to me once that it's harder to be the healthy partner than the one with the illness and that seemed outrageous to me at the time. Now, having seen more illness, I don't exactly agree but I sort of know what she meant. It is so complicated. You don't know how to act, what to do, and there is no book you can read that will tell you because everyone reacts to illness differently. You're always doing something wrong or at least not optimally. Why do you think so many families fall apart when members get ill?

As far as the things people say-- I went to get a flu shot once and the person (nurse?) for some reason asked me why I was getting one. I said it was because a family member was having stem cell therapy and she just nodded. In that moment I realized how fed up I was with all the babble I'd been hearing from other people about the situation. Another thing I hadn't appreciated before.

I asked my sick family member to tell me if anything I did bothered him, and he said emphatically, "Everything you do and say is perfect." Which was clearly not true; I think it was his way of saying I was showing up and doing my best. Anyway it was just huge; it freed me from all the self-doubt that was almost making me want to stay away.
posted by BibiRose at 5:30 AM on August 13, 2012 [2 favorites]

What loosemouth wrote reminded me-- it's still a relationship; you still have ups and downs. Currently, one of my best friends has a life-threatening illness. I'm not his caretaker at all; I drive him places sometimes when his partner has to be somewhere else. We fight and snap at each other quite often, and sometimes I'm ashamed because I know his condition is affecting how he thinks and I shouldn't take his behavior so personally. But then, our friendship always been a little turbulent; it would actually be kind of scary if that stopped.
posted by BibiRose at 5:43 AM on August 13, 2012 [1 favorite]

The platitudes you hear from people are the recycled platitudes of their parents and grandparents. They don't read. They haven't discovered that a nod of understanding, or a simple, "That's tough, what can I do to help you out?" would go a lot farther. Those platitudes are not slings and arrows, they are soap bubbles of no importance whatsoever.

Make a list of things that would help you out; a meal, or an hour of attendance or a shopping trip. When someone genuinely asks if they can help you out, have it ready. Most people are just waiting for you to ask.

Do seek a support group, even if it's just for a "Mc's Day Out" every once in a while. Taking care of a friend is always easier when there are ten or fifteen people around who can just descend and take everything off of you on a regular basis. You'd be surprised at the availability of these groups. You pay back when you pay it forward and help somebody else down the line. Our group is currently helping a guy who was seriously injured (eleven surgeries and counting) in a scooter accident. Our next task is assembling sixty-five bicycles for Needy Kids for the holidays. So, it has downs and it has ups, too.

I wish you strength, and send you a big hug.
posted by halfbuckaroo at 6:29 AM on August 13, 2012

But the more I'm complemented for doing so, the more I come to resent it. Not him, mind you. Not even the situation. But it just feels so disingenuous.

This is the first time I've seen Impostor Syndrome manifesting over being supportive in a relationship rather than as it relates to professional accomplishments, but that's what this sounds like. Everyone who's being a supportive partner in these situations feels like you do: they're not supermen, they're just doing what they need to do, and when people heap praise on them for it, as you say, it seems disingenuous, like at any moment you're going to be outed as "not the perfect caregiver." Finding other people who've been through what you're going through will probably help.
posted by deanc at 7:00 AM on August 13, 2012 [2 favorites]

I can't speak to much of your question, and I'm not sure if this even helps, but I will say that at least part of the reason people are looking at you in amazement for continuing to take care of someone and stand by them while they're sick--not about you or how you act. It's rooted in sexism, and (although I have not experienced this personally) possibly homophobia.

Seriously. People think that because you are a guy it is a god-damned miracle that you're doing any kind of caregiving at all and so the compliments often come across as condescending and inappropriate. OH MY GOD, YOU DIDN'T JUST LEAVE HIM IN A DITCH??? WOW!! AMAZING!! GOOD JOB!! It's fucking weird and I don't blame you for being resentful of it because it is, in its own way, an insult too--like they would totally understand if you just went and walked away from your loved ones because that's what people like you do. It's also somewhat insulting to your partner, like he's a burden on you. Ick.

Good luck.
posted by the young rope-rider at 7:03 AM on August 13, 2012 [2 favorites]

It is entirely possible that these folks saying "oh, good for you for not leaving!" or whatever have, well, seen someone who flaked and bailed on an ill partner before. Or they've flaked and bailed themselves. Or their partner was like my grandma, who would dissolve into a puddle of tears and basically refuse to do anything helpful as far as I could tell when her husbands got sick.

I'm with you on the "well, what ELSE would you do? I'd be an asshole if I actually left and abandoned him, wouldn't I?" thoughts, but they could just mean it in the context of "well, some folks actually don't stick it out, so congrats to you for not bailing." They may be more focused on the wishful thinking of wanting to leave in their heads if they were in that situation.
posted by jenfullmoon at 7:24 AM on August 13, 2012 [2 favorites]

Give yourself permission to be a little bit of an asshole to the strangers who compliment you because the reality is they are being assholes to you. Rather than genuinely respect and care that you are doing something incredibly hard, they are imposing on you at a time when you don't have it to give. They are most likely imposing because no one ever loved them that much and they never loved that much and they just want to touch it by proxy without having to make the kind of sacrifices involved.

I would probably give them a look that conveyed my contempt for their shallow life and let them know that this is, in fact, taking every single thing I have so I don't have it to give to them. I would view it as doing them a favor: Teaching them to give you genuine respect and care by backing the fuck off and not trying to vampirically bleed you for a little of the love their life lacks might teach them something that would put them one step closer to having that kind of love in their own life.

Let them know that real love is not remotely about being a fair weather friend and, without being so blunt as to say it, let them feel the disgust you have for their blighted soul. You have earned the right to stand in contempt of anyone who would be so disrespectful of your devotion to your life partner as to impose this way. Sorry they think love should be anything less.

You might also let them know that hoping it conveniently ends suddenly amounts to praying for his death. Again, contempt is a perfectably reasonable response to someone implying that wouldn't it be nice if the love of your life conveiently dropped dead.

Anyway, that would be my bitchy reaction. And I wouldn't feel in the least bit apologetic about it.
posted by Michele in California at 7:57 AM on August 13, 2012 [1 favorite]

how do you deal with your imperfect feelings when you're going through a rough time?

Be honest. When your partner says "This isn't what you signed up for" reply with (I'm extrapolating) No. It isn't. It's kind of hard, because I want to be perfect, to really be here for you, but some days, it's not easy. But I'm here for the long haul. I think your partner will be relieved to hear the truth, to have you admit that sometimes you feel tired or cranky, but that you plan to stick around.

It's totally, perfectly natural to be resentful of the disease and the person with the disease. It is stealing your love and your life. Ask the hospital and doctors if there's a support group for caregivers. You need and deserve support.

Nobody's perfect. Recognize how well you're doing, and the toll it's taking on you. That doesn't take away from recognizing how bad things may be for your partner.
posted by theora55 at 8:11 AM on August 13, 2012 [2 favorites]

First of all, being in your situation sucks. It's exhausting, and trying, and scary and overwhelming. You CAN'T be perfect all the time. No one expects it. People appreciate you in your imperfection.

When someone compliments you, they're commiserating with you, and giving you an opportunity to lean on them, even lightly, for just a moment.

When someone says, "It's amazing how well you're dealing with all of this," feel free to say, "I'm like a duck, all grace on top of the water, but underneath, my feet are going like crazy." Or even, "I put on a good front, trust me, I have my moments." You'll be surprised how much support you'll get.

We all do what we have to. I think a support group would do you a world of good. You'll even benefit from a visit from the hospital social worker. When hanging out with your partner, check in with the nurses and see if and when that person will be around and see if you can grab him or her for a couple of minutes. Express your fears and concerns, hopefully you can get referrals, or even a hug.
posted by Ruthless Bunny at 8:40 AM on August 13, 2012 [2 favorites]

And the other 2% of fear and doubt is so, so small. It would be present in anyone except for a saint.

Um, I am pretty sure that saints, and bodhisattva, and heroes, and all those people had at least that 2% of fear and doubt. What makes them saints and heroes and bodhisattvas etc is that they go ahead and do what needs doing despite that 2% or 5% or whatever.

I think deanc's Imposter Syndrome comment up above is worth thinking about. I am crap at taking compliments, because I almost always feel that I just did what was a) obvious, b) needed doing, and c) I could do. I also know all the stuff going on behind the scenes, how it almost fell apart over and over again, the amount of nagging I had to do, the stuff that went wrong, and, most importantly, how much I wanted to pack it all in and go home.

I use Buddhist ideas to get through these times. First, life is unsatisfactory. Creating a fiction where life is better and then comparing it to what's going on just makes the unsatisfactoriness less satisfactory. So I try and focus on what really exists rather than what I might prefer (weirdly, this helps even when I am in serious pain; not comparing the pain to my desired state of "not being in pain" makes the pain another sensation rather than OMG PAIN!). Second, this moment is the only time we have -- the past is memory and the future is imagination -- we can only act in the present. We obviously can't (and mostly don't want) to live without planning or memory, but it's a good idea not to let fears (and hopes, for that matter) for the future and guilt (or good memories) from the past take up too much of our attention. Third, try to accept what comes, good or bad. In this case, when people say complimentary things to you, whether they are a) really complimentary or not (ie just platitudes or distancing gambits) or b) make you feel better, take that as it comes. Say "thank you" and either take it to heart, if you can, or let it slide off if you can't. Hell, sometimes, when I am really pissed off and worked up and just out of sorts, I try and take a second and say "May all beings be healthy, happy, peaceful, and free from affliction." Weirdly, it helps, at least some of the time.

Other than that, do your best, and give yourself permission to feel that sometimes your best is not quite enough, but that it is what you can do. I like the idea of making a list of practical help you need, so when people say "can I do anything," you can respond with, "here are a couple of things I need; would one of them work for you?"

Good luck, and be as kind to yourself and your partner as you can manage.
posted by GenjiandProust at 8:51 AM on August 13, 2012

So. I am the ill spouse. I say "This isn't what you signed up for" as a way of venting my own guilt about being the ill spouse. Sometimes my husband says "Eh, it's the luck of the draw" when people praise him for being the well and caregiving spouse, or "I know she'd do the same for me" or similar. "'In sickness and in health,' right?" was something he said to one of my doctors that made my heart melt.

A while back, I was the (comparatively) well adult child being praised for caring for my very ill father, and before that, my very ill mother-in-law. And, yeah, it's what you do. But sometimes it gets overwhelming. So, "Thanks" and "Sometimes it's overwhelming" and "Dad is helping me a lot with my book" and "I appreciate your mentioning it" and "It's hard work, but I'm glad to be able to do it" and "I think it's brought us closer together" and whatever were my responses, but usually "Thanks, it's kind of you to mention it."

As an ill spouse myself, I don't feel my husband has to be perfect. He just has to be there and keep loving me.

Something I wish he wouldn't do would be to get angry about my health setbacks to me, because it's hard for me not to feel that he's angry with me when he's angry with my immune system. Does that make sense? Another thing I wish he wouldn't do is say "I wish I could fix this" because it makes me feel like I don't have agency, even the limited agency I have as someone in treatment for chronic illness.

But that's me. Your sweetheart may have different buttons that might get pushed from time to time. Being sick is so emotionally draining; if he snaps at you, it doesn't necessarily mean that you've fucked up, but maybe that he's overwhelmed with how much the situation is fucked up.

Agreeing with everyone that joining a support group, in-person or online, for caregiving partners might be tremendously helpful. Also, if you can, make time for yourself to recharge your batteries, whether it's seeing a ridiculous comedy or walking in the park or getting a massage or taking time for a thorough workout.

Best wishes to you.
posted by Sidhedevil at 8:59 AM on August 13, 2012 [8 favorites]

I've dealt with a very analogous situation. Although his health is stable right now, it isn't always and it has the potential to get much, much worse. What has worked for me:

1) We had a conversation, during a calm time, where I told him how deeply I loved him, and that I would never do anything on purpose to hurt or upset him. If I ever do hurt him, he is to assume it was unintentional and he is to forgive me for it because he'll know it wasn't coming from a place of malice or intent. This has at times been easier said than done, but he can usually come back around to it once he's calmed down from whatever it was that happened.

2) We had another conversation, also during a calm time, about the unfortunate reality that I am human and have my limitations too, and my needs as a person too, and his illness does not, unfortunately, cancel those out. In order to be my best self for the stuff that I *can* handle, I do need him to sometimes shield me from the stuff I cannot. What that means is, he's had to learn to lean a little on others who are on this team, as have I. For example, he had a problem recently with his arm (which was a side effect of kidney dialysis) which needed to be corrected with day surgery. I heard the word 'surgery' and freaked out, and in his mind, this was just a minor thing and he was impatient about explaining it to me. But I needed to have it be explained. So, if he could not do it, I was fine with having a conversation with someone else who could. Similarly, if he gets into depressive mode and starts ranting, I can gently refer him to his therapist for it, and that's ok.

3) There are times when the best way to preserve my energy and attention for him will be to outsource things, and so we keep a savings account so we have money for that. For example, his physical limitations prevent him from doing almost all of the cleaning. If he gets really sick again, that's going to be the last thing I want to spend my energy on. So, if we have to pay someone to do it now and then, that's not so terrible. Or if we have to get grocery delivery it's not that bad.
posted by JoannaC at 10:38 AM on August 13, 2012 [2 favorites]

Just wanted to address the comments from well-meaning strangers: by calling you a "saint" it's likely that, as jenfullmoon said, they're just trying to give you credit for being a good person and not bailing out. The latter is sadly common and the former deserves respect, but expressing this gets a little tricky due to semantic shifts.

When "awesome" starts to sound like merely "better than average", anything less than "saint" may come across as damning by faint praise. I doubt many people are really holding you up to impossibly high standards - they just don't want to say "decent person" and have it sound like "lazy slacker who isn't trying hard enough".

Anyway, kudos to you for doing the right thing and the hard thing. Good luck.
posted by Quietgal at 2:21 PM on August 13, 2012 [1 favorite]

I've been going through something very similar the last couple years (heart issues with my husband) and could have written your post, Mike. If nothing else, know that you're not alone in your situation or feelings.

I hate the compliments. What else can you say except, "Of course, what else would I do." You've signed up for better or for worse (married or not) and really mean it. And hey, the whole situation could be reversed. I don't know what your health issues are, but I'm diabetic, among other things, and it could easily be me with multiple ER visits, doctor appointments, medication changes to keep track of, and so on.

The mister mentioned several times that it wasn't something I signed up for and thanks for sticking around. I reminded him of our discussions before we got super serious regarding how much older he is than I am (he's 16 years older). I reminded him of what I said then - that I was fine with whatever was thrown at us - for better or worse, in sickness and in health. I worried too that he was saying it because he felt some sort of ambivalence from me or that I wasn't showing how much I supported him. I can only say that your continuing actions are what count, not what you may feel from time to time or even what you say. It's always your actions that really let a person know where you are in any situation.

You are not going to be perfect all the time, it's just impossible, you're only human. Please don't be too rough on yourself, what you're feeling is normal. Big hugs!
posted by deborah at 2:57 PM on August 13, 2012

My partner and I have been in a similar situation for most of our years together, twelve years in October. He'd been on disability already when I met him but was relatively healthy in spite of HIV, Type 1 diabetes, and multiple related conditions. Then the week before he was moving into my house he fell off a ladder, and everything changed. Since then there's been a lot of ups and downs, but it's been overall a long slow decline, with occasional improvements, abrupt intense crises, and lengthy adjustments to a "new normal" that never lasts long enough.

The last three years have been the worst, with numerous hospitalizations or ER visits. Last year alone he was hospitalized six times, including dealing with a stroke, a pulmonary embolism, a heart attack, and a quadruple bypass. I mention all this only to illustrate that I really know where you're coming from and I can put myself in my place.

Sometimes I feel so inadequate, other times I think about how much of my own life I've put on hold or what I might be missing out on. There are times he asks me if I want to "trade him in," like replacing a beat-up old used car. I always answer "of course not."

What it comes down to, I think, is that there will always be feelings of regret or wondering what would have happened if he or I had made other choices. The choice I do in fact make, every day, is to be here with him. I work from home. I cook and clean and walk the dogs. I take him to every doctor appointment and pick up every prescription. And I tell myself that the negative feelings, when they come, are only feelings, after all. They aren't the essence of myself, and they don't control me. I recognize them. I express them as appropriate. And then I let them go.

The one feeling that remains above all else is simply gratitude. I never know when my partner will be taken from me. Will tonight he fall and break a hip? Someday that is likely, but maybe not now. Will the cortisone injections help his cervical spine, or will we move on to consider surgery? And if then, what? I have him now, we have each other, and this moment is all that really matters. For this, every day, every minute, I am grateful.

I don't know you, and I don't know how to advise you. But I do hope, sincerely, that my story provides some inspiration, or at least a helpful way of thinking. As for the comments people say about being the "put upon partner" or being "so good" or making such sacrifices, believe me, I've been there. Someone used to call me "Saint Bob." I eventually turned that around and made a joke of it, "Look, it isn't easy being a saint!"

But I did give in and got an angel tattoo on my shoulder, too. With that, perhaps I've accepted some portion of that calling. This is, simply, what I do.
posted by Robert Angelo at 8:51 PM on August 13, 2012 [1 favorite]

I'm bad at asking for help, but I'm even worse at graciously saying thank you for that help because I'm afraid I'll say something stupid. Just wanted to say thank you to everyone who posted here. You were a bright spot in a tiresome week. And I'm taking all of your wisdom to heart -- and reading it over and over again until I've almost got it memorized.
posted by MCMikeNamara at 3:21 PM on August 16, 2012 [2 favorites]