Supporting a seriously ill loved one without being intrusive or grim

February 4, 2016 5:32 AM

My favorite cousin is in a pretty serious health battle. She's vitally important to me, to my wife, and to my kid (her godson). We've always seen her at least monthly and called her every week or so. But now she's going through the fight of her life and she's not even always telling us when she's been hospitalized or is otherwise struggling. We want to find a way to step up our support for her without being intrusive or making any grim assumptions about her prognosis. How do we do that?

My cousin is awesome. Seriously. She's funny, ceaselessly kind, smart as whip, and has spent her life being there for other people, more than I could ever detail here, let alone properly thank her for. But right now, she's going through treatment for cancer, which may be spreading. She also has Parkinson's. And Hep C. And she's a heart attack survivor. And a double kidney transplant recipient. And so on. Honestly, she's had somewhere around five times more bad luck than is remotely fair.

She's hanging in there. She's getting treatment, which is growing ever more complicated, but she's trying to stay upbeat. No one who knows what an amazing woman she is would expect any less. And she does have her husband to lean on.

But... she also doesn't tell us what's going on. We found out through the grapevine she was in the hospital this week undergoing plasmapheresis. Last month, she took a nasty fall and was taken to the ER without telling us. She's always been like this, too. There's a famous story about her going incommunicado for a week then calling her mom to ask for a ride home from the hospital. Sometimes, we talk to her while something awful is going on and she glosses over it or doesn't mention it at all. She's not opposed to us knowing these things, but she will only cop to them if someone catches her in the moment.

I don't know whether this comes from an urge to be private or, more likely in her particular case, that she doesn't like to worry people or let her problems loom too large in other people's lives. I think she doesn't want to be a burden.

Thing is: we don't mind. She's the greatest and we want to be here for her. Hospital visits, helping her with errands or this or that, just coming by to hang out more and hold her hand. We're ready.

But how do we do this without firstly, being intrusive, or worse yet, dragging into the open the awful, unspoken (but increasingly real) possibility that she might be dying? She's fighting so many things at once and it's not trending in the right direction at all. We're hoping for a rally, but at a certain point we worry about how much one poor body can take. Even so, we're not interested in lamenting her odds, we just want to help and be there with her.

What do we do? Do we just call more and push her for cues? Do we just start going regularly, invited or not? I would love to push her husband to keep better in the loop, but he's an introvert to such an extent that I cannot imagine him bringing us in like that.

Her sister and one of her brothers are gone. Her mom and dad are gone. Her older brother is mentally ill and, bless his heart, more of a burden than a help. But she's a huge, constant part of our family and we're hers these days. But if we're going to gently shoulder our way in and try and be there more for her and step up as her support network, we're going to have to go outside of some comfort zones.

What do we do? How?

posted by anonymous to Human Relations (12 answers total)

All you can do is tell her that you love her and want to support and help her in any way she needs or wants, whether it's stuff like grocery shopping or hanging out and waiting with her while she's at medical appointments. If you want your support to be about what she needs, and not what you need, that's about as far as you can take it. Don't put her in the position of feeling like she has to manage your emotional stuff in addition to her own.

I'm really sorry you're going through this. I know how scary and frustrating it can be.
posted by rtha at 5:44 AM on February 4, 2016 [6 favorites]

I might speak with her husband. Call him and ask him what you can do to lighten HIS load. He may just need someone to talk to, or he might need someone to spot him $20 so he can take the laundry to the fluff and fold.

If I were sick, I'd want someone to reach out to Husbunny to help him out.
posted by Ruthless Bunny at 6:01 AM on February 4, 2016 [12 favorites]

In addition to the above, tell her how much you love her, how much she means to your family, and how much you want to be there for her in whatever way she wants and needs. Basically what you conveyed to us. It can be hard for givers to become takers, even when justified, but impressing upon her that "what goes around comes around" may help her realize that she has earned the right to lean on people and you would be honored to be leaned upon.
posted by DrGail at 7:41 AM on February 4, 2016

I've suffered from serious illness for many years, and often struggled with my desire to just hide away from the world and lick my wounds, even to the point of cutting off friends and family who love me. Your relative might be feeling the same way. Show her all the love you can, and focus your efforts on helping with those things that bring routine and security to her life - meals, a clean house, making sure the laundry is done, etc. Avoid surprises and showing up unexpectedly. It seems like you don't know her husband that well, but these things have a way of bringing people together! He needs some care as well, definitely.
posted by backwards compatible at 7:49 AM on February 4, 2016

If you talk to her, some things she worries about might include:

- you guys exhausting yourselves taking care of her in the near term, then being too tired/overwhelmed/busy to be there for her or the people (or animals) she cares about later;

- what's going to happen to her mentally ill brother if she's not there?

- is her husband exhausted? Maybe you can do things to help _him_ out so that he can help her.

- she may not think about this explicitly, but she might get tired from trying to take care of you guys emotionally. It sounds like this is the kind of thing she just always _does_ and she may not even have a way of being that doesn't include her taking care of others' emotional needs. If you can invent one for her, that might help.
posted by amtho at 8:22 AM on February 4, 2016 [2 favorites]

I used to be a lot like that. I was reminded of two things:

1. once someone knows you're in that kind of situation, it is WORSE not to share information because people assume you're in rough shape. If she doesn't want to have to repeat things over and over again, but there is a community interested in her wellbeing, maybe you could offer to set up an email list/facebookgroup/youcaring page or whatever. If you run it, it saves her from having to distribute information.

2. it is a gift to others to let them be the ones to help sometimes. The problem is often that I honestly don't know what I need - I just can't see it. That's why everyday things (like food and cleaning and visits and sending magazines/coloringbooks/wine/playing with my kids) that I don't ask for are the most helpful. Just having them done removes a burden I didn't even know I was feeling. My mom absolutely has to be given a job to do in all stressful circumstances; it is almost always food/baking related. Whether you can say to your cousin "I love you and it is a gift to be able to help you, so please keep us informed and let me do XYZ" without her being angry or thinking you are making it about you really depends on your relationship with her. I learned that particular lesson through therapy, so I'm not sure how I could have been taught it by others, if that makes sense.
posted by dpx.mfx at 8:31 AM on February 4, 2016 [3 favorites]

Maybe you can make a regular check-in time with her husband - like once a week, or every few days, just give them a call just to say hi and see if there's anything they could use a hand with. Say you're going to be in the neighborhood and offer to pick up groceries or help pick up the house; could they use help driving to medical appointments, etc. Make each call low-stakes (make it clear you'll get off the phone if they're too tired to talk or whatever) and then just keep checking in.

If there are communication needs - like other people (friends, family) that need updates or want to help, maybe you could take charge of that so the husband doesn't have to do it?
posted by LobsterMitten at 8:33 AM on February 4, 2016 [1 favorite]

Bring food. She might have dietary restrictions/sensitivities to keep in mind with her illnesses/meds. But having something ready-made to throw in the oven, leave in the freezer if they can't get to it right away, or even just have in the fridge for microwaving portions would be very helpful. Cook extra of whatever you're making for yourselves, and bring a container-full over to their place a few times a week. Just drop it off, don't plan on staying for a visit - making it no-strings attached will be the biggest kindness.

If they have a house, mow the lawn. If you're ambitious, weed flowerbeds, maybe plant some nice annuals you find on sale, it will cheer them both up immensely to see.
posted by lizbunny at 9:01 AM on February 4, 2016 [1 favorite]

Consider -- if you are up for it -- offering to her and her husband to host a page on caringbridge.org where you (or if he or she would rather, they) can post updates. They only need to tell one person -- you -- the state of things, so there's no exhaustion of repeated information and going over and over the same info. You're probably not alone in wanting to be supportive and informed, and this is a great way for people to know when and if your cousin would welcome calls or visits, among other things.

Also, I can't favorite dpx.mfx hard enough. I'm on your side of the equation and it is such an honor and privilege for people to allow me to help them when they need it. Not a burden at all. And there's that old saying: a burden shared is a burden halved. Neither your cousin nor her husband needs to be an island of stoicism. Unfortunately, I don't know how to tell someone in a way that they can hear it that it's not a chore, it's a gift.
posted by janey47 at 9:48 AM on February 4, 2016 [2 favorites]

As someone who has spent the last few years dealing with a life threatening situation, I can tell you that sometimes you just don't have the energy to spend managing help, both logistically and emotionally.

rtha's comment about your versus her needs, and backwards compatible's comment regarding routine and security are both on the nose in my experience.

Being sick like that is oddly like being famous to some degree. You get attention you don't really want, and some people expect you to handle that attention in ways that you simply can't. It's simpler just to limit contact sometime.

My thoughts go out to your cousin. Best of luck.
posted by -t at 10:46 AM on February 4, 2016 [2 favorites]

I have a relative like this. She is, hands down, the most kick ass competent person I know. She is very polite and gracious and will thank people for their gifts and well meaning efforts, but the truth is that she doesn't divulge much because she is so much more competent than other people that most attempts to help her amount to interference and a burden for her. She doesn't like dealing with all the emotional stuff from other people when she is coping with a health issue. To her mind, the health issue is primarily hard work, not some big emotional thing.

Your cousin sounds like that might be her issue. If so, it might work to express to her your desire to give back because of how great she has been to your family all these years, maybe toss out a few suggestions of things you feel you can offer (money, bringing over food, whatever) and if she turns you down, let her know it is a standing offer, please do not hesitate to call if you think of anything you would like from us, then respect her boundaries.

I mostly just respect my hyper competent relative's wishes. Over time, this seems to have improved my relationship to her. I am at least not one of the people aggravating her during a personal crisis.

People who are hyper competent are hard to help. If you have money to spare, that might be one of the few meaningful things you can really do. If she is a great cook with special dietary needs, she may be unwilling to eat any food prepared by anyone else, even a high priced restaurant. Her cooking may be simultaneously tastier and better for her health, so it doesn't really make sense to accept something of lesser quality.

Best wishes for you and her both.
posted by Michele in California at 11:08 AM on February 4, 2016 [2 favorites]

When you're in a situation like that, managing other people is exhausting. Even if they want to "help" they want you to tell them how to help or to discuss things you don't want to discuss. You have to manage their emotions as well as your own, and I don't blame her at all for just not wanting to do it. I'd think of a few things you can do, then offer a choice of those options to her husband, with the caveat that if they'd actually be more trouble than help you're happy to do something else. You might offer to do their grocery shopping for them, or to make two days a week your days to take your cousin to any appointments, sit with her in the hospital, etc., so that her husband has a bit of a break.
posted by MsMolly at 11:14 AM on February 4, 2016 [2 favorites]