Coping with a long-term illness
February 18, 2017 10:00 AM   Subscribe

My husband will be in the hospital for a long time. I have a small baby. I'm having trouble coping with how to build a life around this.

My husband went into the hospital two weeks ago with what we thought was a minor glitch in a chronic illness he has already. It's not. It's cancer, and they can't even begin to assesss it yet because he developed some complications during the initial time in the hospital. I was told that even in a best-case scenario, we are looking at a months-long recovery.

I am on maternity leave with our four-month-old baby, so at least I don't have a job to worry about preserving. But I'm finding it hard to juggle all this mentally. Some competing thoughts that have particularly been an issue for me:

- I'm surprised by how much time is being taken up dealing with updating other people. Numerous friends and relatives call me, every day. My sister-in-law has anxiety and is convinced her parents don't tell her everything. So she calls me instead and is never quite satisfied with the answers. People want to know 'the odds' but the doctors don't talk that way, in those terms. They aren't satisfied with hearing that everything is the same as it was yesterday. They want news. Sometimes there isn't news. Or there is, and it's bad.

- The way people treat me is sometimes hard. I appreciate hearing that I'm family and people are here for me no matter what, especially when those sentiments come from his family and not mine. What I don't like is the big, weepy embrace followed by a tearful 'I just feel so SORRY for you and for the baby!' Yes, I feel sorry too. It's a sucky curveball from the universe, no doubt about it. But I don't like feeling like I'm this pity object for everyone to sit there and look at, and I feel like there needs to be a balance between respectful grieving and having space to enjoy the baby's first year a little.

- I've had to do some things my husband doesn't enjoy, and I feel a little guilt about that. For example, I've been spending some time with relatives he doesn't care for. I've also let my mother pay for some things when we were out together and he was always really sensitive about that. If he were mentally aware of what's going on, I hope he would understand that I'm in a delicate situation here. That if he does not survive, I'll need these people...

- I have some anxiety about the practical aspects. Due to some earlier life experience, I have some issues around having no money and being poor. My father-in-law was able to get a power of attorney so I can access my husband's paycheque. But with that said, life will change for baby and I dramatically if my husband does not survive because he made a lot more money than I did. I'm afraid of being poor again. And asking people to help me with this feels like a step back in life. I'll do it for the baby but it feels like a step back.

- I wasn't ready to leave the baby with strangers yet. And I didn't want to go back to work full time right away. And now I'm leaving him with a babysitter to do the hospital visits and work won't be an option. Mommy guilt...

I have a therapist but it's one more thing to leave the baby with someone for. I'm looking for some been there, done that advice...
posted by anonymous to Health & Fitness (18 answers total) 2 users marked this as a favorite
 
Very sorry that you are going through this. As someone with a family member who is going on several months in the hospital, we had a lot of success setting up a CaringBridge website (https://www.caringbridge.org/). It's made for exactly these kinds of situations and allows you to post updates in one place that others can check, and somewhat cuts down on the constant updating of people because you can point them all to the same place. It also gives people a place to comment, which I've found they appreciate, and gives them a way to express support without having to get in touch with you directly. You can enlist a friend or family member to help you with posting the updates, and you can choose how accessible to make the site.
posted by sparrow89 at 10:19 AM on February 18, 2017 [20 favorites]


I'm surprised by how much time is being taken up dealing with updating other people. Numerous friends and relatives call me, every day.

I have some advice that I was not able to take myself, but I hope you will be able to:

Of all the people hounding you, there ought to be some of them saying "Oh, I wish there was something I could do/Let me know if there's anything I can do, anything at all." you know the kind of thing. *Many of them don't mean it BUT don't worry about trying to figure out who's sincere. You'll know as soon as you ask for the smallest thing.* Pick one of these people, if you've got one, and tell them absolutely yes they can help: they can be the main contact person to give out all the medical updates to his friends and relatives. & then you only have to keep one person informed, not ten or fifty. Being the person who takes the phone calls is one responsibility you should be able to give away.

this only works if you have a person you can trust with sensitive information who really means it when they offer help. One terrible thing that can happen in your situation is you put off taking people up on offers of help for as long as possible, and then a day comes when you actually really need a relatively small favor and you give in and ask, and they don't come through. But it shouldn't hurt to ask.

What you really need is a friend who really likes getting mad in a righteous cause (LEAVE HER ALONE, YOU'RE MAKING IT WORSE) -- an anger proxy for you the way you're being a proxy for your husband when he can't manage his own care. There is absolutely nothing you should feel guilty about but even so, it is helpful to outsource the kind of thing that might make you feel guilty.

I hope he would understand

He would, he will, anybody in the world would. You can and should talk to anybody in the entire world that can help you or make you feel better in any way at all.
posted by queenofbithynia at 10:43 AM on February 18, 2017 [47 favorites]


This has been posted here a few times - but the circle diagram showing "comfort in/dump out" might be helpful.

I've "been there" in some ways, but everyone's experience is different. The one thing I would recommend is to do whatever you can to take others people's needs for comfort and attention off your plate.

If that means ignoring phone calls or texts until you deal with them, that is perfectly fine. You also don't have to hug anyone ever - from this internet stranger.
posted by pantarei70 at 10:43 AM on February 18, 2017 [15 favorites]


Designate someone else as the point person for inquiries, this person can also make requests for specific help.

People should be helping with housework, childcare, errands, and generally creating caring space for you and your husband and son. The point person can and should set the tone as positive and respectful, they can nicely tell well wishers that being maudlin is unhelpful. I just watched someone go through something similar, and every time I saw them all together, I wanted to shake their in-laws who were entirely dour and miserable to interact with. A mutual acquaintance asked how our friend was doing. I accidentally blurted out, "I wish they had nicer people around them." Seriously! Having a positive attitude is really important. Get someone to be in charge, like a gatekeeper. Let them talk to your sister-in law who should be gently directed to offload her anxiety to a therapist or a support group. Know what I mean?

Also. Get a practice, even if it's just a walk around the block every morning or evening with your son, or as easy as saying good morning every day to a new plant you place on a sunny window sill. A private ritual, just for you.

Nthing Caring Bridge.
posted by jbenben at 10:43 AM on February 18, 2017 [2 favorites]


I'm so sorry for what you're experiencing.

One practicality: It is ok for you to turn your cell phone off. I would identify a trusted family member who is a low-stress person to deal with, and have that person be the point of contact. All questions go through him/her. You do not need to be the person to provide all the support for your extended family.
posted by arnicae at 10:45 AM on February 18, 2017


Nthing Caringbridge, it was a godsend to a friend when she needed it. She (or her partner) could leave updates about her condition or whatever, and other people could leave notes for her.

Also: you are never required to answer your phone; just because you have a phone does not give anyone (like your sister-in-law....) permission to take up your time whenever they feel like it. Let all calls go to voicemail then only respond to the ones you feel like responding to (ignore the rest, other people's feelings and anxiety are not your problem); or else as others say getting a friend to be your point person and handle communications.

Hugs to you, and take care of yourself, too.
posted by easily confused at 11:01 AM on February 18, 2017 [6 favorites]


Seconding the CaringBridge website.People can access it, and you can update it as you are able.

One thing I found very helpful when my wife was diagnosed with brain cancer, was texting. It may sound so simple, or dumb, but I became the world's most efficient texter those first few months. I also leaned on friends / family to disseminate news, which they were more than happy to do. For example, I call N, wife's godmother, since she is one who speaks some english, and can also understand my poor portuguese. I tell N the news, and she tells the family in Portugal. That same night, I call my best friend K, and she in turn calls everyone to tell the news. Don't be afraid to ask for help.

There is nothing you can do about people, and their often misguided attempts at commiseration. Good gods, the comments I heard. Paste a smile on your face, get through the encounter, then let it go. It helps if you have a friend or two that you can share these experiences with...but if you don't, just try to put them in a little compartment that you can revisit if you wish. You won't wish, btw.

Do not feel any guilt about doing things 'your husband wouldn't enjoy'. You need to look after yourself right now. One thing I wish I had done is pampered myself a little bit more...it's so hard to do when you are the one in charge of all the things, but in hindsight, it would have made a huge difference.

Hope this helps. Memail me if you want/need to.
posted by PlantGoddess at 11:02 AM on February 18, 2017 [3 favorites]


Of all the people who are most certainly offering to help you, pick the dragon of the bunch: organized, sharp teeth but strong diplomacy skills, and ask her to be your spokesperson. Have her get a gmail account and google voice number, and you redirect everyone to her. She can set up the email list, she can answer the calls/listen to the voicemail, she can politely tell your SIL that you are not to be the target of her anxiety at this time. She can also manage the gofundme/errands assignment/laundry rota.

If you were my friend, I would do this for you. It's not actually that much of a time/energy investment for someone who's not connected in a primary way to the crisis.
posted by Lyn Never at 11:05 AM on February 18, 2017 [8 favorites]


I am so sorry this is happening. I have had an husband accidentally in the hospital but with like 90% less severe/scariness than what you have (not the same at all), and I also have an anxiety disorder, so I think I can provide some advice from my experiences:
- i always couched what i needed to make it easier for others-- waiting for someone else to say "do you need anything" so I could respond "well if it isn't too much a bother I'd really appreciate if you could go to the grocery store in the next 4 days and get some milk..." now is the time where you don't have to do that and NO ONE WILL CARE. seriously, set up a CaringBridge or a special FB page or a special Twitter account or an email group of friends (pick the one easiest for you and invite everyone who says the "if i can do anything to help" thing) where you can say "hey dudes I need 1 gallon of 2% milk and a box of 24 Huggies size medium, delivered to my house between 5-6 pm today." or "I need someone to come and watch the baby for 20 minutes at noon today so I can take a shower." or "i need someone to come do laundry right now." Being direct with your needs and letting others handle the logistics is scary for an anxiety person but there will be a core group of people who follow through.
- Let go of the "who is paying" thing. Times of crisis are when you don't have to keep accounting. I guarantee your husband would be OK with you letting your mom buy groceries or a meal or shoes for the kid during this time even if under normal circumstances he would be livid. Also your friends will be giving you things that cost money and things that are intangible like their time and love. What comes around goes around, and in the future you'll be in the donator spot and can give your own money or love or time.

I want to give you major props for having power of attorney and access to your husband's money. That is a super important task and you already finished it! You are awesome, and being that aware about financial issues at this stage in this situation bodes well for your family's future. You are doing everything right in this area from my perspective.

If you are in Los Angeles feel free to memail me and add me to your group of "people to do stuff for you" as I would be 100% delighted to get to help you. I hope you are able to get some good advice here. I'm sending internet hugs from a stranger.
posted by holyrood at 11:09 AM on February 18, 2017 [14 favorites]


I'm so sorry you are going through this. I am going through a family medical crisis as well right now, and although I don't have a child to add into the mix, I empathize with your feelings of being overwhelmed and uncertain about how to deal.

Here is the thing I have learned in the past week: there are people whose job it is to help you. Some examples:

- Your hospital will have a social worker you can meet with, who will help you find practical resources in the community (maybe the hospital has on-site daycare so you can visit your husband without the baby; there may be a volunteer organization that brings home cooked meals to women in your situation; etc).

- There are medical concierge services that you can hire (some even bill insurance if you can't afford it out of pocket) to manage talking with doctors, collecting insurance and past medical history information, scheduling appointments with specialists, looking up long-term care options, etc. My hospital recommended one that is local to Seattle but I was also just introduced to a new national one called Wellthy.com

- If your employer offers an EAP, call them up and see what resources they have available.

- Hire a house cleaner, mother's helper, etc so you can give time back to yourself and not have to worry about house chores. I would even go so far as to say that if you feel like you can't afford these services but friends are offering to help, tell them you need help with hiring some help (or ask them to do the work themselves). Usually asking for money is seen as rude but in this case I think it's okay.

Also my biggest piece of advice is to be honest with your friends and family. This week when people ask me how I'm doing I bluntly say "I'm not doing well, things aren't going well, and I can't really talk about it right now." I know this will feel rude at first but people shouldn't be forcing you to share information or express emotions on demand.

Wait, I lied. My biggest piece of advice is don't feel guilty about any decision you make right now. You are doing what you need to survive and that's okay.

You can get through this and it sounds like you have a caring community to support you when you are ready for it.
posted by joan_holloway at 11:43 AM on February 18, 2017 [10 favorites]


You don't have to leave the baby to go to your therapist. If you want that time alone, that's totally understandable, but you absolutely can bring an infant to your sessions if that's what it'll take to make them happen.
posted by teremala at 11:46 AM on February 18, 2017 [17 favorites]


My husband was diagnosed with cancer when I had a 6 month old and a 3.5 year old. Memail me if you need to talk.
posted by fancyoats at 11:55 AM on February 18, 2017 [3 favorites]


Find someone to be your principal update contact from those that ask to help.
Have relatives visit and help with your baby as long as you can stand them and they aren't going to put your baby in jeopardy.
Accept dinners and visits and support from whomever you want to. You need just as much support as your husband does, because yeah - you have suffered just as much emotional trauma. You have a nuclear family and uncertainty and you have a lot of contingency plans your brain needs to work through. People help.
posted by Nanukthedog at 12:37 PM on February 18, 2017 [1 favorite]


pick the dragon of the bunch: organized, sharp teeth but strong diplomacy skills, and ask her to be your spokesperson

This is great advice. I fit the description above and would be very pleased to take on such a role for a friend.

One thing I have seen that worked really well in such a situation is having the spokesperson set up an FB Group for "Team [Person]." They can post updates and refer well-meaning people to that group so they can see others who care and coordinate offers of help.

Sorry you are going through this. It's very okay to look after yourself and your child in this and let other people worry about the rest, e.g. too bad your SIL is anxious but she's just going to have to find another way to manage that.
posted by rpfields at 1:19 PM on February 18, 2017 [6 favorites]


I regards to poverty, in the midst of all of this horror and stress you need to talk to the HR people at your husband's workplace. He may have employer-provided life insurance; that's fairly common. They may provide illness benefit or similar as well. You really, really need to find out what's in your husband's benefits package. If your husband will be off work for a year, he may qualify for SSDI which would be a help.

Don't worry about letting your mother help you. Your husband is in hospital being taken care of and getting the help he needs. You need care and help, too. How you are taken care of when you are caring for him and for your child isn't really his call right now.

I'm sorry your family is facing this.
posted by DarlingBri at 6:52 PM on February 18, 2017 [2 favorites]


Accepting help is hard for me too...
However I did tell people who offered vague assistance that I would be taking all offers at face value. In other words if you offer to take a day off to help- I will assume that you are able to do so. This is how I was able to identify people who really would and could help. I didn't judge- but I wasn't in a position to try to figure out whether an offer was reasonable or not. If you offer, be ready for me to accept.
Take care and take comfort, solace , and even joy from wherever you encounter it- this can only help you and your spouse.
posted by calgirl at 7:18 PM on February 18, 2017 [1 favorite]


The web site LotsaHelpingHands does communications like CaringBridge, but shines with scheduling tasks & meal needs that you list for others to claim.

Good luck.
posted by wenestvedt at 8:37 PM on February 18, 2017 [1 favorite]


If you haven't done so already, I will suggest you read the emotional labor thread on the blue. I have a serious medical condition. The thing where people make you feel like a pity object? The main point of that is that your life is so in the toilet, it makes their problems look good in comparison. It isn't about you at all. You need to learn to disengage from that dynamic. Most of the people who do that would not help you if your life depended on it.
posted by Michele in California at 10:10 AM on February 25, 2017


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