Helping male friend in early 30s through extended hospital stay?
May 15, 2018 10:15 AM Subscribe
A close friend is currently hospitalized for acute leukemia. He is going to be in the hospital for at least a month and possibly even longer, depending on how he responds to chemotherapy. He has minimal family support so his network of friends is taking the lead. How can we best help him through this?
Most of the advice I find online for helping people through chemo is aimed at older adults undergoing outpatient chemotherapy. Our friend "Brian" is mostly confined to his hospital room (to protect his vulnerable immune system) and will be for at least another 4 weeks. He's 33 years old and isn't interested in stuff like crossword puzzles, knitting, etc.
Brian has minimal contact with his parents; he has no siblings and is single. There are about seven of us close friends who are taking the lead on visiting him regularly and bringing him takeout (when requested); his friend & roommate is also bringing him items from home and helping with laundry.
Another difficulty is that because we are all in the same stage of life (early 30s) we don't have direct experience with an extended health crisis with someone our own age. "We don't know what we don't know," basically, and our friend is also just figuring this out and has said he isn't sure what to ask for or how to ask for it. We are familiar with sites like CaringBridge and GoFundMe and have offered to set up accounts for Brian, but he just says he'll think about it. We're trying to be respectful of his space and desires while also encouraging him to accept help, without pressuring him or overwhelming him. Again, we're not sure what we're not thinking of. I've been in the hospital for 3.5 days after a C-section and have an uncle who had a blood cancer, and that pretty much makes me the most medically experienced of our friend group, most of whom are young men who avoid going to the doctor unless it's dire. We're not sure how to make a hospital room more user-friendly, what else might help him kill time, what to look out for, what to offer, etc.
Some info on Brian:
-His main symptom right now is tiredness while also feeling cooped up. He hasn't had nausea yet but we are aware that + the tiredness could both get worse over time. His appetite has been normal so far, but he is already sick of bland hospital food. We bring him takeout and favorite snacks whenever possible.
-He is mobile but can't go outside and I don't think is allowed into the "general public" hospital area.
-He is an avid gamer (MMORPG type, usually) and has a decent gaming setup at the hospital, but also doesn't have much energy for games right now. Gaming and computers are his main hobbies.
-He likes movies/television and has a Roku connected to his TV, but the hospital Internet is mediocre and there's some lag during high demand times. We're going to offer him a portable Blu-Ray player.
-He is not allowed to have fresh produce or plants brought in from outside.
-He lives a very "bachelor" lifestyle (undecorated apartment, minimal furniture, not very tidy). I've offered to get some posters or pictures in his room to brighten it up and he's said that "might be nice" but I'm not sure what next steps would be. His own home isn't very home-y so things I might do for myself (adding a rug, a nice lamp, etc.) he might be indifferent about.
-I believe he already has an Audible account for audio books.
-At least one person is visiting him every day unless he says otherwise. We always check first to confirm if he's up for it and he's been good about letting us know if he doesn't want visitors. But his preference so far has been for people to come over, "otherwise I'm just sitting here thinking about my own mortality."
Thank you in advance, MetaFilter!
Most of the advice I find online for helping people through chemo is aimed at older adults undergoing outpatient chemotherapy. Our friend "Brian" is mostly confined to his hospital room (to protect his vulnerable immune system) and will be for at least another 4 weeks. He's 33 years old and isn't interested in stuff like crossword puzzles, knitting, etc.
Brian has minimal contact with his parents; he has no siblings and is single. There are about seven of us close friends who are taking the lead on visiting him regularly and bringing him takeout (when requested); his friend & roommate is also bringing him items from home and helping with laundry.
Another difficulty is that because we are all in the same stage of life (early 30s) we don't have direct experience with an extended health crisis with someone our own age. "We don't know what we don't know," basically, and our friend is also just figuring this out and has said he isn't sure what to ask for or how to ask for it. We are familiar with sites like CaringBridge and GoFundMe and have offered to set up accounts for Brian, but he just says he'll think about it. We're trying to be respectful of his space and desires while also encouraging him to accept help, without pressuring him or overwhelming him. Again, we're not sure what we're not thinking of. I've been in the hospital for 3.5 days after a C-section and have an uncle who had a blood cancer, and that pretty much makes me the most medically experienced of our friend group, most of whom are young men who avoid going to the doctor unless it's dire. We're not sure how to make a hospital room more user-friendly, what else might help him kill time, what to look out for, what to offer, etc.
Some info on Brian:
-His main symptom right now is tiredness while also feeling cooped up. He hasn't had nausea yet but we are aware that + the tiredness could both get worse over time. His appetite has been normal so far, but he is already sick of bland hospital food. We bring him takeout and favorite snacks whenever possible.
-He is mobile but can't go outside and I don't think is allowed into the "general public" hospital area.
-He is an avid gamer (MMORPG type, usually) and has a decent gaming setup at the hospital, but also doesn't have much energy for games right now. Gaming and computers are his main hobbies.
-He likes movies/television and has a Roku connected to his TV, but the hospital Internet is mediocre and there's some lag during high demand times. We're going to offer him a portable Blu-Ray player.
-He is not allowed to have fresh produce or plants brought in from outside.
-He lives a very "bachelor" lifestyle (undecorated apartment, minimal furniture, not very tidy). I've offered to get some posters or pictures in his room to brighten it up and he's said that "might be nice" but I'm not sure what next steps would be. His own home isn't very home-y so things I might do for myself (adding a rug, a nice lamp, etc.) he might be indifferent about.
-I believe he already has an Audible account for audio books.
-At least one person is visiting him every day unless he says otherwise. We always check first to confirm if he's up for it and he's been good about letting us know if he doesn't want visitors. But his preference so far has been for people to come over, "otherwise I'm just sitting here thinking about my own mortality."
Thank you in advance, MetaFilter!
Best answer: It sounds like you're doing a lot of good things already! Respecting his wishes, trading out roles, visiting regularly.
I think that video not connected to the hospital internet is key. Video is great for passive entertainment.
In general, while convalescing, your body is doing a lot of work and it's hard (and can be frustrating) to do things that are more mentally engaging. Read short stories rather than novels, if you know what I mean. So rather than a retrospective of the films of Tarkovsky, DVDs of sitcoms are perhaps a better choice. I watched a lot of Chopped.
It might also help him if he switches gaming some from MMORPGs to types of games that are less reflex-based and less directly intense; recuperating is a great time to get into Civilization or other turn-based games, as well as potentially less focused games with a pause button.
One dimension you haven't mentioned is his clothing; the more you can dress like a human and the less like a patient, the better it is for your spirits. Ask about slippers, etc.
One other thing, which I'm not expert with as much as I've pretty always been the one in the bed, is to make sure that you guys (the friends visiting him) are taking care of yourselves. This is a long haul, and caregiving is difficult work. Make sure that you guys don't get burned out yourselves, even if that means slowing the pace a little.
posted by Homeboy Trouble at 10:31 AM on May 15, 2018 [6 favorites]
I think that video not connected to the hospital internet is key. Video is great for passive entertainment.
In general, while convalescing, your body is doing a lot of work and it's hard (and can be frustrating) to do things that are more mentally engaging. Read short stories rather than novels, if you know what I mean. So rather than a retrospective of the films of Tarkovsky, DVDs of sitcoms are perhaps a better choice. I watched a lot of Chopped.
It might also help him if he switches gaming some from MMORPGs to types of games that are less reflex-based and less directly intense; recuperating is a great time to get into Civilization or other turn-based games, as well as potentially less focused games with a pause button.
One dimension you haven't mentioned is his clothing; the more you can dress like a human and the less like a patient, the better it is for your spirits. Ask about slippers, etc.
One other thing, which I'm not expert with as much as I've pretty always been the one in the bed, is to make sure that you guys (the friends visiting him) are taking care of yourselves. This is a long haul, and caregiving is difficult work. Make sure that you guys don't get burned out yourselves, even if that means slowing the pace a little.
posted by Homeboy Trouble at 10:31 AM on May 15, 2018 [6 favorites]
Best answer: Seek out a support group. They’re especially good resources for “we don’t know what we don’t know.” Your situation may be unusual but it’s probably not unique—someone has gone through it before. Ask a hospital social worker about support groups.
posted by Smearcase at 11:03 AM on May 15, 2018 [2 favorites]
posted by Smearcase at 11:03 AM on May 15, 2018 [2 favorites]
Best answer: Comedy, whether YouTube clips, funny sites, movies, etc. I would stay up late when I couldn’t sleep from steroids looking at silly stuff friends sent. Tablets worked better for me than a laptop, but I didn’t have a PIC line, so they were using one arm/hand or the other. Agree on clothes - I got a bunch of stupid t shirts and wore them at the time. Maybe a Kindle unlimited or Steam subscriptionor something? Streaming music subscription? Nthing headphones, plus earplugs. A good eyeshade so he can nap during the day, too. Keep the chow coming but watch if his tastes change - I got “metal mouth” from my chemo and avoided what had been favorite foods for months after because of that awful taste.
Definitely keep him company as requested, see if he needs help keeping up on bill paying/apartment stuff (like cleaning before he goes home), and make sure he has some help after he’s out, because he might need it even more then.
And Jimmie Holland’s The Human Side of Cancer is a good read. It’s ok for him to feel crappy and be worried, but if you notice that it becomes consistent and overwhelming, encourage him to talk to his healthcare team about depression.
You are awesome friends and Brian is lucky to have you! He might like The Fully Sick Rapper videos.
posted by OneSmartMonkey at 11:13 AM on May 15, 2018 [1 favorite]
Definitely keep him company as requested, see if he needs help keeping up on bill paying/apartment stuff (like cleaning before he goes home), and make sure he has some help after he’s out, because he might need it even more then.
And Jimmie Holland’s The Human Side of Cancer is a good read. It’s ok for him to feel crappy and be worried, but if you notice that it becomes consistent and overwhelming, encourage him to talk to his healthcare team about depression.
You are awesome friends and Brian is lucky to have you! He might like The Fully Sick Rapper videos.
posted by OneSmartMonkey at 11:13 AM on May 15, 2018 [1 favorite]
Best answer: Being too tired to do anything, but also bored out of your mind is a big thing in hospital. If you're in with something life-threatening, that bored space can get very depressing with thoughts of your own mortality. So as everyone has said above, things which don't require a lot of thought, or a lot of attention span are great. I posted an AskMe about books that fitted this sort of situation recently. I've liked playing Ascension on the iPad when I've been in hospital - I think that games which are based off board games are much more forgiving of a shortened attention span than most other computer games.
posted by Vortisaur at 11:24 AM on May 15, 2018 [1 favorite]
posted by Vortisaur at 11:24 AM on May 15, 2018 [1 favorite]
Best answer: Bring chargers with the longest cord you can. Being able to charge your device (or not worry about killing your battery watching a video) while not having to shift positions in bed is super helpful.
posted by The demon that lives in the air at 11:33 AM on May 15, 2018
posted by The demon that lives in the air at 11:33 AM on May 15, 2018
Does he have an iPad? The new 9.7" works with the Apple Pencil if he's into drawing at all. I'm an artist and disabled at home and I'm in LOVE with the iPad I just got. It could be great for gaming too for stuff that requires less concentration. Way easier to manage than a laptop. Can a group of you pitch in for one? If he does cellular on it (which of course will need to be added to his phone plan if that is affordable to him or could be added on a friend's or family's account) then the wifi situation will be mitigated. Get one of those tri-fold magnetic cases for cheap so it can be easily propped up on a side table.
posted by Crystalinne at 11:57 AM on May 15, 2018
posted by Crystalinne at 11:57 AM on May 15, 2018
Building on the answer above, a third-party stylus like the Adonit Pixel will work with most other iPads including the mini. Along with the Procreate app and YouTube how-to videos can keep a person occupied for hours.
posted by tamitang at 1:25 PM on May 15, 2018
posted by tamitang at 1:25 PM on May 15, 2018
Best answer: If he's got access to a tablet or a phone, he/you can download Youtube Videos for him to watch offline later. If he likes video games and doesn't have a lot of energy, watching youtube videos of gamers playing (and narrating/responding to chat) can be great. We watch CohhCarnage videos while drawing/working - it can let you enjoy getting immersed in the game and feel like you're in good company without expending that much energy.
Best wishes to your friend and to you.
posted by Geameade at 3:23 PM on May 15, 2018
Best wishes to your friend and to you.
posted by Geameade at 3:23 PM on May 15, 2018
Also, not sure if you already have this, but here's the ring theory of crisis support in case it's useful for explaining to circles of friends/supporters.
posted by Geameade at 3:27 PM on May 15, 2018 [2 favorites]
posted by Geameade at 3:27 PM on May 15, 2018 [2 favorites]
I'm so glad you and your friends are stepping up for Brian. Good on you guys!
posted by james33 at 5:26 AM on May 16, 2018
posted by james33 at 5:26 AM on May 16, 2018
Response by poster: Thank you everyone for your suggestions - I have marked the ones I think we're most likely to implement in some way (not that the drawing suggestions aren't a good idea, he's just not into art). We might discuss getting him a refurbished iPad that we trade back and forth with new uploaded content each time. He's understandably strapped for cash but also embarrassed by and resistant to expensive gifts, so that one is harder to navigate.
He went public about his diagnosis on Facebook yesterday so I am hoping that helps increase the number of people able to help with visits. I made a private FB group for some of our core friends so we can coordinate a visiting schedule, care tasks, and bounce ideas off each other for what he might need.
Main priorities right now are getting him video content he can watch independent of the hospital WiFi, bringing him a condiment kit so he can season hospital food, we're setting him up with a food delivery gift card (local equivalent to Seamless or DoorDash), and I'm going to get some posters printed of scenery around his/our favorite camping location on Lake Superior, for his room. My husband is visiting him later this week and will run some of the other ideas by him to see what he thinks.
posted by castlebravo at 7:53 AM on May 17, 2018
He went public about his diagnosis on Facebook yesterday so I am hoping that helps increase the number of people able to help with visits. I made a private FB group for some of our core friends so we can coordinate a visiting schedule, care tasks, and bounce ideas off each other for what he might need.
Main priorities right now are getting him video content he can watch independent of the hospital WiFi, bringing him a condiment kit so he can season hospital food, we're setting him up with a food delivery gift card (local equivalent to Seamless or DoorDash), and I'm going to get some posters printed of scenery around his/our favorite camping location on Lake Superior, for his room. My husband is visiting him later this week and will run some of the other ideas by him to see what he thinks.
posted by castlebravo at 7:53 AM on May 17, 2018
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He seems to have reasonable digital kit. In his place, I would want a good set of headphones to block out the hustle and bustle when needed to.
posted by SemiSalt at 10:27 AM on May 15, 2018 [2 favorites]