how can I support a close friend with a terminal illness
June 25, 2014 8:17 AM   Subscribe

A close, long time friend just got the C word from his doctor. This is not a good prognosis, it's perhaps weeks/months to live. He and his family are more than likely going through various stages of fear and emotional paralysis, just my assumption as I've yet to speak with them personally, just got the news. How can I best support them from a distance?

I don't know that there is some set of rules you can follow to help people in this other than lending your emotional support and keeping your own beliefs, phobias and attachments about dying solidly in the background. If there are sites that might help me have a clue about this, that would be helpful.
I hope to go see them soon. My friend's been facing the potential for this turn of events for the past year, now it's looking much more real that he's on the air strip taxiing unexpectedly towards his end. He is more than likely experiencing various physical symptoms and emotional states related to this sudden turn of events. His family is facing a crisis and emotional storm relating to his passing, dealing with his physical decline and the events that would follow.
What can I do to help them given they are half a state away and I will see them probably for a short visit?
posted by diode to Human Relations (21 answers total) 7 users marked this as a favorite
You have no information. You need information. Don't assume you know what his and/or his caretakers' state of mind and concerns are. They're often not what you'd expect. You also need to be really honest with yourself about what you have to offer.

Above all you need to not get in the way or make things worse. Better to do less but kindly then to bumble in and get in over your head.

Start with getting over your fear and emotional paralysis and speak with your friend. Really listen. Maybe ask him if it's okay for you to speak with his main family or friend caretakers/support, (and find out who these people are). Then talk and listen to them.

Then you will be in a position to start figuring out your visit as well as what else you can do for them, based on what they need and what you have to offer. Meals organized/delivered? Lawyer found/referred/retained? Preliminary research on hospices? Calling out of town friends and organizing phone calls or visits? Showing up for an intense short visit early on, or planning for a longer, bedside vigil type visit when things get worse? Come back and update your question. Right now, we don't have enough to go on to help you, I think. (How far is half a state away? How much money and free time have you got? etc)
posted by Salamandrous at 8:31 AM on June 25, 2014 [1 favorite]

You may find this FPP from this morning helpful.

I might volunteer to do concrete things like helping them get a CaringBridge site set up.

When you go see them, arrive prepared to help clean up, make food, or do other household things that might be slipping. Also arrive ready for ideas of fun things that people can do to take their minds off of the situation (bring cards, fun movies, etc). BUT when you get there, the first thing you should do is ask what they would like you to do. Your backup planning is just for if they are too fried to really think of a task to give you.

But I'd also be careful about the assumptions that you're making. Not everyone is going to go through "various stages of fear and emotional paralysis" on this news (especially if your friend has been prepping for this for a year). It's so good that you want to help, but don't assume that these people are going to be crippled by this, you know?

I'm sorry to hear about your friend.
posted by sparklemotion at 8:32 AM on June 25, 2014 [3 favorites]

Based on what I have witnessed with working as a volunteer for hospice, families/patients often desperately need practical support. Friends/family visits are important, but in the space between that, there are endless things that need doing: meals, laundry/housekeeping, patient care....all of this can get very challenging especially if the family/patient has limited financial resources. Since you are too far away to provide that in person, maybe you could arrange for something regular to be provided if you are financially able? A meal a week delivered? A housekeeper that comes in? Help paying for nursing care if needed? Something else you know they are struggling with?
posted by nanook at 8:32 AM on June 25, 2014 [4 favorites]

If you have any to spare, you can send cash. Illness is a huge money suck. Does your friend have children? Setting up a trust for them could be an option.
posted by kmennie at 8:33 AM on June 25, 2014

Ask them.

Honestly, ask them what they need or what you can do. Tell them what you can give them time and effort wise. Let them tell you what they need.

Don't guess. Don't speculate. Don't wonder. Be clear. Time is short.
posted by inturnaround at 8:33 AM on June 25, 2014

Call right away and say, "I've heard about your prognosis. I want to help in whatever way I can, what can I do for you?"

Then listen, and do it.
posted by Ruthless Bunny at 8:35 AM on June 25, 2014 [5 favorites]

I am sorry that your friend is so ill.

When my family members were terminally ill (also with cancer) the best thing for them was to have people keep treating them as if they were alive, and not already dead.

It seems like it's hard to be supportive long-distance, but it's really no different from your current friendship. Come for a visit if possible, but also call or email - share a laugh, share an interesting article. Continue talking about his interests, even if he doesn't seem as interested. Listen. If he asks you to do something specific to help his family, for goodness' sake do it.

Answer the phone when he calls, because in that state it's pretty damn rare for a sick person to pick up the phone and call someone, so if they do, they've deemed it's very important to them, right this minute.

He will likely try to make sure his family is taken care of through the end. Ask him (or them) to call you if they think of something specific you can do. Even if it sounds like a little thing to you (could you call the phone company about this extra charge?) it will be taking something off their plate.

Try to be a place where your friend can express emotions that he can't express at home because he is trying to protect his family's feelings.

On preview, the advice about being prepared to deal with practical matters is spot on, and whatever money you may be able to offer ($20 for gas, or $200 for groceries) will be a huge help and not forgotten.

Best of luck.
posted by vignettist at 8:36 AM on June 25, 2014 [5 favorites]

Ooof. I'm so sorry, for him, his family, and you. I've dealt with death/dying several times, both within my family and as a hospice volunteer. Pretty much everything you need to know can be summarized in a short primer:

1. It's about THEM, not you (The Ring Theory goes into more detail on this). Never assume anything - ask first.

2. Just BEING there is enough, whether in person, on the phone, via e-mail, whatever. Do not underestimate the power of contact alone, regardless of what you do/say when it's established.

3. That being said: let your friend guide you. Take "no" for an answer gracefully, if/when he's not feeling up to a visit/phone call.

4. Also let your friend guide you with regard to the conversations you'll have. Do not shy away from painful topics if that's where he wants to go. Do not worry openly/obsessively if he's choosing instead to remain positive. Be brave, open-hearted, respectful. Listen if that's what he wants... talk if THAT's what he wants. Hell, be blackly humorous if that's where things go.

5. Gifts are tricky (he may not be up for eating, drinking, seeing a movie, reading a book, whatever), but they show that you're thinking of him, just like they would with a well person.

6. Do not try to force Big Emotional Goodbye Moments (not that you WOULD... just sayin'). A rule of thumb: any emotional scene that would take place in a movie should take place IN YOUR CAR, BY YOURSELF, as you drive away.

7. While this is a terrible experience, you will be a better, more-nuanced, more-complicated person for having gone through it.
posted by julthumbscrew at 8:38 AM on June 25, 2014 [6 favorites]

Offer to cut the grass? Walk the dog? Offer to run anything over to the post office? Offer to make copies of something important (my mom had many recipes that people eventually fought over)...

In my family, when my mom was dying people brought food and it was helpful.... so you could order some meals from a mail order place so they have a few microwavable things to eat and don't have to spend time cooking (unless they want to).... That stuff might make them feel good weeks or months from now, after the person has passed and they are just tooo damn tired to cook.
posted by misspony at 9:19 AM on June 25, 2014 [1 favorite]

Also, please be aware that sometimes, just sometimes, people make it farther that the "weeks/months to live" that you've mentioned --- I've got a friend who received a totally-unexpected diagnosis of Stage 4 lung cancer; he was given "12-24 months" back in early 2009..... over five years later he's still here. My point is, assuming there is a written-in-stone endpoint isn't going to help anyone; attitude really does count for a lot, and there's no need to give his stuff away today.

And please don't make assumptions about what he and his family are feeling or any stages you think they should be going through: they're feeling what they're feeling, and that's all there is to that. They might've already accepted and moved on or they might be struggling with the diagnosis; they might be fully deployed in fighting back, hunting for the best doctors, procedures and strategies.

What can you do? Treat him as the friend he is, not as a disease. Ask him if he wants you to do anything, and do it. Bringing or cooking meals might be nice, but please note that sometimes cancer drugs also affect taste buds --- the friend I mentioned above is pissed because his meds make chocolate taste awful; another friend says her leukemia drugs pretty well killed her ability to taste anything not drenched in hot sauce. Does he need/will he need help later on around the house, like yardwork or house cleaning? If he'd like, you could find a lawyer for him: we all need to have a Last Will & Testament, even if we're expecting several more decades. (He should also get a Medical Power of Attorney made up.) Offer to help organize the other friends and family who'll be volunteering. Heck, just sit on the porch with a couple of beers and talk to him.
posted by easily confused at 9:50 AM on June 25, 2014 [3 favorites]

People sometimes need lawns mowed, cars serviced, pets cared for. When I spent three months away from my home to do extensive chemo & transplant, I needed someone to take care of my house.

Don't make any assumptions about their state of mind. They are coping in whatever way works (or not) for them. They don't need to share the burden of your own grief, but they may be comforted by a hug.

You've known this person a long time. Call, ask if you can drop by for a visit. One of the more chilling developments for me, when I thought I would soon die, was the way my "friends" seem to evaporate. I understand their position: they simply didn't know what to do. In my case, I wouldn't have wanted to endure a line of well-wishers trying to comfort me. But I sure could have used a bit more material support in the form of housekeeping (to ease the burden for Mrs Mule), in the form of yard-work and pet-sitting.

Please understand this: I realize that a situation such as this can be harder on the loved ones who are going to live than it is on the person who is about to pass away. When I thought my death was inevitable and just around the proverbial corner, I made peace with it in my own way, but I could do nothing to ease the suffering of my family and close friends. I was happy to see the support Mrs Mule got, and I appreciated the token hugs, which I understood to represent what, basically, was inconsolable grief. Speaking for myself, I found the most comfort in simple expressions of love, not blurbs about how I'd be missed.

Other than this, I wanted to know that certain loose ends were taken care of. I haven't the slightest idea what this may be as it applies to your friend. When you visit, you can ask.

BTW...I had a nearly miraculous response to the transplant. As far as I know, I'm the only MM survivor who's lived this long without a relapse. I guess others in my position exist, but they are statistically non-existent. The reason I bring this up is because I would not have wanted to hear any stuff about clouds with silver linings or any of that sort of thing. I can't speak for others. Some people want to put off looking over the edge of the pit for as long as possible, and I figure it's not up to me to try to steer them back to my version of reality. Should your friend and the family be in this frame of mind, it may be best to express your hope in the beneficence of the silver lining, and let it go at that.

Some odd things sometimes happen: be prepared for dark humor, but don't initiate light-hearted banter until you know how it works with these folks.

I hope you can see the irony in me offering you sympathy for your friend's situation. Reality beats up the living, not those who've already passed. Please know that I understand your confusion, and I do have a clue at the heartache you must be experiencing. Your pain is valid.

Treasure your memories. They will comfort you. Your friend already occupies a place in your heart that death cannot take away. This may seem trite, but it's what combines with time, to turn bitter grief into bittersweet memories. Sweetness helps keep us from wallowing in despair.
posted by mule98J at 10:27 AM on June 25, 2014 [3 favorites]

Don't give advice. ESPECIALLY don't say anything about a positive mindset being beneficial for cancer patients. This advice is from my mother, who has breast cancer.
posted by wryly at 10:32 AM on June 25, 2014 [8 favorites]

My best friend has a very serious, most likely terminal cancer right now. We're 1 year into it and here are the three biggest things I've learned:

-- Be a good listener. Be available for a lot of listening. For a whole bunch of reasons, Bestie and I sometimes go weeks without seeing each other. We talk every weekday morning. Whether it's a 2-minute check-in, or an hour long. Let your sick friend set the agenda -- is today a light convo about packing school lunches? Or a tearful slog through some depressing news about blood tests? Your job is to be flexible and accomodate either scenario.

-- Be prepared that the flurry of help, concern, communication, etc with family and friends will drop off precipitously after the first few weeks or months. I've been absolutely flabbergasted at some close friends in this circle who have dropped off the face of the planet. Don't do that, you. Stay close to your buddy. Be there. Figure out a budget or the strings you need to pull to be physically close as much as you can. When you can't be there, be present.

-- If your buddy has children, be prepared for the idea that the very best thing you can do for them is perhaps not to sit down and have a convo about "dad's dying, let's talk about feelings." They may be getting that already from dad, mom, grandma, etc. Your job may turn out to be the crazy friend who takes them out for ice cream and doesn't mention the prognosis once. Every family is different, of course. But my Bestie's kid and I have become insanely close this past year, and a huge part of my role in that is being the one who helps reinforce that life goes on. So, paradoxically, we have become closer by not having a suffocatingly close relationship right now, something which other family & friends have been unable to do with her. Their expressions of sympathy seem, to the child, to be suffocating and cloying.

Good luck with this. It's terrible. It's horrible. It's so fucking sad.
posted by BlahLaLa at 10:47 AM on June 25, 2014 [10 favorites]

Please don't tell them how incredibly brave and tough they are, sometimes they just want to feel bad or miserable or scared and not have to meet other people's expectations that they fight/be upbeat/happy. Tell your friend you are there to talk when they want to talk - and then be that person.

My dad has outlived his prognosis (adult leukemia) for several years. But one of my sisters also told me, shortly after the diagnosis, "Oh, big deal, he's still around, everyone's overreacting like he's already dead." But my father was terrified. Really scared, and unsure if he would be alive 6 months from now. (He was given less than 2 years.) He didn't reveal this to my sister because my sister was being a jerk. You don't know what you're going to get. In other words, don't try to manage other people's reactions, whether it's the person with the terminal illness, their family members, or friends. Play it by ear for them, and expect other people to, as well. That doesn't mean walking on eggshells, but this is one of those occasions in life where one person's needs have to predominate.
posted by mitschlag at 12:16 PM on June 25, 2014 [1 favorite]

Things that some dying folks in my experience have found useful (your person's mileage may vary!):

- Someone they can talk to who can handle conversations that other folks find too difficult or inappropriate, such as "this is so miserable but I don't want to burden my close family with that" or "I am so angry at my wife for surviving me" or "could you please tell the doctors this bodily thing has happened of which I am barely able to speak for embarrassment".

- Fruit and nice hand cream (that's not a dessert recipe). Lavender sachets or other natural smellies. Your friend would probably like to at least pretend they do not smell of wee or worse.

- Expertise with disabled person friendly communication technology. It's good to be able to talk to your friends and family even if your hands aren't working well or you can't see well or your cognitive powers are deserting you.

- A frank conversation about how the person wants to die, if that's something they want to talk about, and if the more immediate family are too upset to discuss it.

- Reassurance, like Yes that does sound frightening, and Yes I'm not surprised you're angry about that, and yes that sounds really difficult to deal with, and oh that doctor does sound dreadful.

- Humour; not the cancer related kind but the kind involving gentle joking around about mundane nonsense.

- Reassurance that the person is in your thoughts (and maybe those of other mutual acquaintances). Cards and notes reiterating same. Being in hospital is very isolating and it's important to know you're not on your own in there, even when you are.

- Company, sometimes, even the kind of company that is just sitting and knitting quietly or reading a book.

- Flowers (if not disallowed by hospital).

- Ability to calmly help with feeding when visiting if necessary without making a big deal out of it.

Things that have not gone down so well include:

- Books or activities that the person involved would really love, but their sight or cognition is no longer up to the task.

- Diatribes from third parties on how dreadfully the news has affected them personally and how upset they are and woe is them, etc etc.

- Crap about how positive thinking or acupuncture or prayer or experimental drugs or some shit you read on the internet might be just the thing.

Finally you may want to remember that "weeks or months to live" refers literally to not being dead. It doesn't necessarily (worst case) mean weeks or months awake and able to understand what's going on. One of my Mum's friends planned to come and visit and completely missed her because she didn't know this.
posted by emilyw at 1:43 PM on June 25, 2014 [5 favorites]

A close, long time friend just got the C word from his doctor.

Let me suggest you start a journal to deal with your feelings.

My mother has had cancer twice. My sister has had it four times. My dad had it twice (and lived when he was supposed to die both times and later died ...basically of old age, in essence). My brother has had cancer. I have multiple aunts who have had cancer. Most of my relatives have a phenomenal track record of surviving when doctors expected them to die and no one in my family has ever once used a polite euphemism like "the C word."

People who can deal with the medical piece realistically do better than those who can't even use the word for it. People who put their time and energy into researching their options, improving their diet, and doing what they can do seem to be the ones who "beat the odds." The ones who start planning their funeral seem to be the ones who go ahead and die, on schedule, like the doctors suggested they should.

So please deal with your own feelings first and don't make your emotional problem with this into yet one more problem for them. When my dad was given six months to live (he lasted another three years) and was having his latest medical crisis and my mother was spending all day at the hospital, my sister was nagging me to "call mom and be emotionally supportive" and making all kinds of noises about what a terrible daughter I was for not being there in her hour of need blah blah blah. So I made an effort to get hold of my mother (in spite of her mostly not being at home and not ever answering her cell phone, thus I had to get hold of her at home SOMEHOW) and told her "Yeah, sis felt I should call you etc" and my mother kind of went off on me about how annoying she found it when people did that to her.

Having to put up with the emotional bullshit of other people was just one more chore to deal with in an already overly burdened schedule. My mother was nicely putting up with my sister's endless fretting and calling because my sister also had cancer and she didn't want to upset her. But she let me know in no uncertain terms that if she wanted to talk to me, she knew my damn phone number. And she was busy and short on sleep and her days ran 18 hours and she was fine emotionally. (The woman grew up in a war zone and is very, very practical.)

When I was super sick, trying to deal with the emotional bs of other people who wanted to fret over me and wanted to suck away what little energy I had with their fussing and emoting was something I also found burdensome. So I was fine with being told by my mother to stop bothering her, in essence. (I had only called at all to basically get my sister off my back -- my mother's position did not exactly surprise me.)

Then, when you do go see them, aside from trying to be realistic about the practical limits of time and energy they have and the real world practical burden this is for them, try to enjoy their company and be good company. Try to be alive and present and in the moment. Try to let them know you value them as a human being and how their friendship enriched your life. Try to do something with them that will be some kind of positive experience for them, if possible, without turning it into some kind of burdensome chore they have to take on. Try to give them more of a life in the time you are together. That's all you can do with anyone, anyway.
posted by Michele in California at 2:21 PM on June 25, 2014 [3 favorites]

I'd make sure that you also have a support system or someone you can turn to if you're stressed or overwhelmed or need to unload.

I had a couple of friends that I could talk to when my roommate got cancer. It ended up being easily treatable (YAY), but still - it affected me more than I thought it would.
posted by spinifex23 at 2:40 PM on June 25, 2014 [2 favorites]

When one of my friends was dying of cancer last year, I texted her several times a day. Often I would receive a series of texts from her after she woke up after dozing off due to medications. It was easier for her than visiting or calling; her energy was unpredictable and often saved for medical appointments. It gave her something to read on sleepless boring nights.

Things we texted:

Pictures of cats
Cute dresses
How is today?
I'm scared too.
Your partner will be okay, we will be there for him.
Silly jokes
Photos of drawings and doodles
Remember when...
Mmmm cake
Street art
Colourful things
Trees, sun, sky
I love you.

posted by heatherann at 5:21 PM on June 25, 2014 [7 favorites]

I'm keeping an eye on this thread because my brother started home hospice last week. He has a 5 year old son so I've been looking for ways to enhance his legacy with his son. Some things I've thought/done of so far:

- Offered to squirrel away and restore one of my brothers cars as a gift for his son's 16th bd
- Sent him a box set of cartoons (favorites of his 5 year old self) that we used to watch on Saturday mornings with our Dad.
- Sent them a competitive game (Anki Drive) to explore & play together

While I visited last week, his wife appreciated relief from bedside duty while he and I caught up on old times. If possible, plan at least two trips with the 1st ASAP for quality time together. The plan for a 2nd trip makes your 1st departure easier.
posted by tinker at 6:35 AM on June 26, 2014 [1 favorite]

Ask for his help... my ill brother sparkled when I ask where to go for a good burrito.
posted by tinker at 8:38 AM on June 26, 2014 [3 favorites]

Response by poster: Thanks for all these comments, they are spot on. I've been thinking along these lines that are suggested here and it all gets mixed up with my own feelings, attachments, so I've tended up in a bit of paralysis. This thread is great as it crystallizes the things I need and should be doing for my friend. Yes, the c word is cancer and yes, he's still very much alive so I need to basically support him being alive and healthy in his current situation and leave all my emotional bs in the background as much as I can manage. Be a positive source of love and appreciation. Thanks all.
posted by diode at 8:23 AM on June 27, 2014 [2 favorites]

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