Visiting Mom in hospital when she says "no"?
May 22, 2016 7:57 AM   Subscribe

My Mom is in the hospital for Acute Myeloid Leukemia (AML). She's had an infection for the past few days and isn't doing well - she's not critical or anything, but she's not looking/feeling great and doesn't want anyone to see her in this state. I - plus some other close family members - REALLY want to visit her, especially considering her condition could change quickly - but we are worried she will get upset. What to do?

I am on her "trusted list," which means that I can visit anytime - however, there are many days that she doesn't want visitors. I text Mom every day, and drop by on the days she says she's up for it. Her condition is currently stable, but this could change at any moment.

Her Mom (My Grandma) thinks we should visit her for the support, even if she doesn't want visitors on any particular day. I'd like some feedback regarding this. I don't mind if she's not able/willing to talk; I'd be perfectly fine just piddling about on my iPad and talking to her when she feels like it. I get very anxious when I haven't seen or talked to her for a few days, and calling up the nurses only brings so much comfort. I think Grandma's worried that Mom's condition could go downhill quickly. I'm worried too.

What do you think? How do you feel about unexpected visits on days where the patient is feeling unwell or doesn't want anyone to come up? I can't help but believe that the more we see her and prop up her spirits, the better. (She is ecstatic when she visit and she's feeling well..)
posted by CottonCandyCapers to Human Relations (15 answers total) 2 users marked this as a favorite
No. Respect her agency. Visit when she wants, on her terms. She's the one dealing with a terrible illness, she has to manage her energy levels, she gets to decide when she wants to spend time and energy interacting with other people.
posted by feckless fecal fear mongering at 8:00 AM on May 22, 2016 [38 favorites]

I would respect her wishes. If you need to be close, spend some time in the visitor's room at the hospital, text her and let her know you're nearby if she would like to see you.

At least, that's what I would want if I were in her situation.
posted by HuronBob at 8:00 AM on May 22, 2016 [2 favorites]

Respect her wishes. See her on the days she wants visitors.

For a minute I thought she never wanted visitors, but since that's not the case, your desire to override her wishes is somewhat baffling.
posted by supercres at 8:01 AM on May 22, 2016 [4 favorites]

For many people, even very sick ones, visits involve some semblance of obligation even if you feel like you'll be a self-contained "no hassle" visitor and anyone who is well enough to say that they don't want visitors should have that wish respected. Your anxiety is your issue to manage and you should find ways to destress yourself that don't involve going against your mother's express wishes. Suggestions

- visiting your Grandma and the two of you can work together to maybe assemble a care package for your mom
- maybe something not in-person like a facetime or Skype call if your mom is up to that?
- writing your mom a letter talking about positive things about her or the relationship
- running some interference for her with other family members who may not be as courteous as you (establishing a mailing list for family to let them know how she is doing to collecting photos of people to send to her to look over at her own convenience)

You know your mom better than we do but when I say "No visits" I don't mean "I would like you to push past my token resistance and come visit me anyhow so that I feel loved" I mean "I don't want you to see me like this, go away" You may want to read over the comfort in, dump out ring theory of support. You want your mom to do the thing (allow a visit) that would make YOU feel better and now is not the time for that.
posted by jessamyn at 8:02 AM on May 22, 2016 [34 favorites]

I'm really sorry you are all going through this. It's hard on everyone. Please respect her wishes. If it helps, put yourself in her position and imagine how you would feel if people were not listening to you because it made them feel better to see you.

I get very anxious when I haven't seen or talked to her for a few days, and calling up the nurses only brings so much comfort.

Please do not make her wishes about you and what would make you feel better. Best wishes to all of you.
posted by the webmistress at 8:06 AM on May 22, 2016 [6 favorites]

No. Visit her only when and if she's feeling up to having you there.

Visiting her anyway even when she has specifically said she doesn't want any visitors is the exact opposite of supporting her. "The more we see her and prop up her spirits, the better" might be better for you, but it would just exhaust her even more at a time when she is already trying to husband what little strength she has available.

Please, don't do it. Even just having someone there in her room playing on their ipad or talking to her is more than she can handle sometimes: there's a certain amount of unspoken "hosting a guest" for any hospital patient who has a visitor, and instead of focusing purely on herself she'd have to expend some of her precious energy on entertaining you.
posted by easily confused at 8:29 AM on May 22, 2016 [2 favorites]

As a nurse who's seen far too many sick patients agree to be visited when they really didn't feel up to seeing anyone, I'm incredibly proud of your mom for being clear with everyone about her needs and boundaries. It's so hard to not get railroaded by everyone else's good intentions when you're not feeling well. So bravo for your mom! I hope she gets the rest she needs and that her condition improves very soon.

I would be absolutely, hugely furious if I said I wasn't feeling well and didn't want visitors and people showed up anyway. I would feel disrespected and unheard. I would feel infantilized because people were assuming I didn't know myself well enough to make my own decisions. I would assume they were putting their own needs ahead of mine, and I would feel they were being incredibly selfish. It would make me think less of them.

Please respect your mom's clearly stated, reasonable wishes about visiting. Find other ways to manage your own anxiety; don't make it your mom's problem to deal with.
posted by jesourie at 8:46 AM on May 22, 2016 [33 favorites]

As someone who accumulated years of time spent in the hospital during the course of my life - pay attention to what your mom is saying.

If she says, "I don't look great today, no one would want to see me like this," explain that it will only be you or only be Grandma and that you will help her wash her hair if she wishes (a HUGELY helpful thing that nurses and aides don't always have time to do) or bring her something special to her to make her feel connected to the "outside world." If she insists that she's not up for it, don't go.

If she says, "No visitors today, okay, let's see how tomorrow goes," then you don't go. You can call the nurses to soothe your fears about her current state but part of being a patient that people can't understand unless they've spent a lot of time in hospitals is the loss of control. Even people who are usually comfortable with others in their personal space can become very careful of who sees them and what kind of access people have to the intimacy of being sick.
posted by Merinda at 8:57 AM on May 22, 2016 [2 favorites]

I can't help but believe that the more we see her and prop up her spirits, the better.

Well I mean let's not kid ourselves here. This isn't about helping her feel better, it's about helping you feel better at the expense of your mother's wishes. So don't go when she doesn't want visitors, and when she can tolerate visitors, shower her with your affection.

My wife is an ICU nurse and has told me many tales of patient's families actively impeding their recovery and treatment because they refuse to leave the patient alone. They need what rest they can get and if that means a rest from family and visitors, then so be it.
posted by Sternmeyer at 10:30 AM on May 22, 2016 [11 favorites]

When you're sick and in the hospital, you have so very very little control or agency in your life. Don't take this little bit of agency she has. Control over something makes you feel good. Please respect her wishes, and don't force yourself on her.
posted by stoneweaver at 2:27 PM on May 22, 2016 [3 favorites]

For the love of all things holy, when a sick person says don't visit, please stay the hell away. As someone who has had long periods in hospital with acute illness I can tell you how exhausting it is to have even loved ones visit. If you go, you're going for you, not her.

Ask if you can drop things in or pick up washing from the nurse's station and not see her. THAT is how you show support to the sick exhausted person.

I've been so unwell as to gain absolutely no joy from any human interaction other than from people bringing me medication or clean sheets because sweat, blood, and other body fluids have taken their toll on my energy, dignity and presentability.

Do not ever ever ever approach a person in hospital who has expressly asked you not to come. I'm almost having PTSD flashbacks remembering how terrible it was to even see my beloved husband or cherished babies when I have been very ill.

Keep in touch by text or with the nursing staff, with your mum's permission. But don't you dare allow your grandma to approach when your mum is not well enough. Others don't get to decide if it's a drain to have, even much loved, visitors. The patient decides. And I can confidently tell you that this kind of illness is not like hand holding after a surgery. This is a different situation and needs greater sensitivity. Let your mum decide when she's ready to receive visitors, and who she allows in. Or next time, she may not tell you she's been admitted and may have staff bar you from entry.
posted by taff at 4:17 PM on May 22, 2016 [4 favorites]

When you're in the hospital you can control almost NOTHING about your life. You eat on someone else's schedule, get woken up on someone else's schedule, and sometimes can't even get out of your own bed without help. It's excruciating. You can tell her once that you're happy to just be there and sit with her without talking, but if she says no for gods sake listen to her and let her control this one thing. I really can't emphasize enough how terrible it is to have so little control of your life.
posted by MsMolly at 4:25 PM on May 22, 2016 [2 favorites]

Just a small something in addition to what is said above - when you visit your mom, wear something like a wrinkled tee-shirt and old jeans, and no makeup. I read somewhere about someone being sick in the hospital and how it made them a little uneasy when people who visited were all crisp and made up. Like they can never measure up in their condition, and brought them down a bit. And how they appreciated so much a visit from a person who came as is and they felt more at ease and not worried about their own appearance. This stuck with me as probably something I'd appreciate as well?
posted by LakeDream at 4:54 PM on May 22, 2016 [2 favorites]

How do you feel about unexpected visits on days where the patient [...] doesn't want anyone to come up?
That the answer is obvious?

I'm baffled that not only could she not have made her wishes more clear, you're thinking of going a step beyond and showing up without any warning on top of everything.

How about we turn it around and you tell us in what way this could possibly be an appropriate thing to do.
(She is ecstatic when she visit and she's feeling well..)
There's an important part of that sentence I've highlighted for you.

Honestly, this post almost has to be trolling....
posted by vsync at 11:31 AM on May 23, 2016 [3 favorites]

An experience I had at work last night[1] brings me back here to add that if I were your mom's nurse and she'd shared her visiting preferences with me, I would enforce them with a ferocity that rivaled a trained junkyard guard dog. I would not hesitate to turn you or other visitors away, at first politely and apologetically of course, but increasingly less so if anyone gave me a hard time.

And if your mom didn't want anyone to know it was her decision that no one visit--so many patients fear offending their loved ones by turning down visits--with her involvement and permission I would invent some totally bogus but very official-sounding hospital policy about visitors and proceed to lie to you with a smile on my face and a completely clear conscience in order to keep you out.

My job is to advocate for and protect my patient, and that is what I will do.

Given the tone of your question, I wouldn't be at all surprised if your mom hadn't already expressed some concern about unwanted visitors and if her nurses hadn't already created a plan with her to address it.

[1] Dude. Your daughter is pushing a baby out right now. She is exhausted, in pain, and naked in body and soul. She has told you a number of times that she wants only her husband and her mother present during the birth. For the love of all that is holy, stop trying to tiptoe into the room and hide behind the curtain to sneak peeks of her progress. You are a creepy creeper and I am begging you to give me a reason to escalate this to security.
posted by jesourie at 1:06 PM on May 23, 2016 [6 favorites]

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