Deathbed support for 30 year old friend - what can we do?
August 29, 2014 11:19 PM Subscribe
A dear friend (female, early 30s) is at the end of her battle with cancer. Our circle of close friends is spread out all over the country. We've been sending gifts, visiting, pooling money together for cleaning and dog walking, etc for a year. But we're in the final month or two, she's in pain (just now starting to turn to palliative care) and I'd love some ideas on how we can support her and her husband.
There is a Facebook group where people are constantly posting little supportive messages. We all have signed up for stem cell match programs, etc.
1. We've been sending books and art and stuff, got her an iPad, Netflix, etc. There is a current fundraiser that has raised thousands of dollars already and we've had a few other thousand dollar+ fundraisers. Are there things we should be sending now that would be more useful for both her and her husband?
2. Should people try to visit? She has been refusing visits from friends that live nearby, but when they show up, she grudgingly receives them. We all worry that if we fly to her that it will be difficult and overwhelming for her. She will say no if we ask. Her husband is probably too distraught to make a decision. If we try to visit, should we go in small groups or alone? If we visit, what can we do when we are with her?
3. How can we talk about this realistically with her - both online and on the phone and in person if a visit can happen? Do we pretend that she is not dying and try to talk about other stuff?
4. There is a broader circle of people that have been donating money, sending support, etc. but only a dozen of us know really how bad it is (in our friendship circle, obviously other spheres of her life have people that know too). She did not tell us directly - she is pretty vague right now in her posts to the Facebook group - but her husband tells one of the closer group and then we all know. What is appropriate in terms of letting the outer circles know how bad things are? I assume that they would want to know, but what's appropriate in terms of her privacy? When there have been downturns in the past, I've quietly sent an email to one or two key people in the broader circle and assume that they'll tell their close people quietly too. Should we do this again?
Anonymous out of respect for her privacy.
There is a Facebook group where people are constantly posting little supportive messages. We all have signed up for stem cell match programs, etc.
1. We've been sending books and art and stuff, got her an iPad, Netflix, etc. There is a current fundraiser that has raised thousands of dollars already and we've had a few other thousand dollar+ fundraisers. Are there things we should be sending now that would be more useful for both her and her husband?
2. Should people try to visit? She has been refusing visits from friends that live nearby, but when they show up, she grudgingly receives them. We all worry that if we fly to her that it will be difficult and overwhelming for her. She will say no if we ask. Her husband is probably too distraught to make a decision. If we try to visit, should we go in small groups or alone? If we visit, what can we do when we are with her?
3. How can we talk about this realistically with her - both online and on the phone and in person if a visit can happen? Do we pretend that she is not dying and try to talk about other stuff?
4. There is a broader circle of people that have been donating money, sending support, etc. but only a dozen of us know really how bad it is (in our friendship circle, obviously other spheres of her life have people that know too). She did not tell us directly - she is pretty vague right now in her posts to the Facebook group - but her husband tells one of the closer group and then we all know. What is appropriate in terms of letting the outer circles know how bad things are? I assume that they would want to know, but what's appropriate in terms of her privacy? When there have been downturns in the past, I've quietly sent an email to one or two key people in the broader circle and assume that they'll tell their close people quietly too. Should we do this again?
Anonymous out of respect for her privacy.
If she says she doesn't want visitors, don't visit. Send cards or whatever, call, make it clear you would LIKE to visit but that you are respecting her wishes.
A few months back I was diagnosed with cancer and my doctors were talking about palliative care. When there is literally no future, it can make you really focus on the past, on everybody you ever knew or loved or lost. All of the stuff you are doing is great, but for me, little symbols of past connections would have made a huge difference. Like, something from high school, something from childhood, silly little inside-joke things. If you have a picture of you guys being dorky teenagers outside that Del Taco where you used to hang out... that's perfect. It says that you remember who she was then, that even when she's gone somebody will still remember those moments of her life.
There could be a lot of reasons why she doesn't want to see anybody, and I can't guess what hers are. But I can tell you this: if I'd had so many friends who cared so much about me, it would have made the prospect of dying a lot less painful. From the perspective of me circa June, 2014, she's a lucky lady. I hope that having such awesome, loving friends brings her some comfort. I think it must.
posted by Ursula Hitler at 12:25 AM on August 30, 2014 [16 favorites]
A few months back I was diagnosed with cancer and my doctors were talking about palliative care. When there is literally no future, it can make you really focus on the past, on everybody you ever knew or loved or lost. All of the stuff you are doing is great, but for me, little symbols of past connections would have made a huge difference. Like, something from high school, something from childhood, silly little inside-joke things. If you have a picture of you guys being dorky teenagers outside that Del Taco where you used to hang out... that's perfect. It says that you remember who she was then, that even when she's gone somebody will still remember those moments of her life.
There could be a lot of reasons why she doesn't want to see anybody, and I can't guess what hers are. But I can tell you this: if I'd had so many friends who cared so much about me, it would have made the prospect of dying a lot less painful. From the perspective of me circa June, 2014, she's a lucky lady. I hope that having such awesome, loving friends brings her some comfort. I think it must.
posted by Ursula Hitler at 12:25 AM on August 30, 2014 [16 favorites]
I've been through this more than once.
I suggest you let it go, remain positive on FB, and not try to visit since she's not keen on that route.
There's a line you may cross where you are no longer helping, but intruding. This may be it.
So sorry because I've been there
posted by jbenben at 12:49 AM on August 30, 2014 [4 favorites]
I suggest you let it go, remain positive on FB, and not try to visit since she's not keen on that route.
There's a line you may cross where you are no longer helping, but intruding. This may be it.
So sorry because I've been there
posted by jbenben at 12:49 AM on August 30, 2014 [4 favorites]
Respect her agency.
No you should not try to visit, because she's told you not to.
No, you should not tell people she's dying if she hasn't told people she's dying.
No, unwanted visitors to the door should not impose on the time of an exhausted dying woman with a handful of hours left.
There is a current fundraiser that has raised thousands of dollars already and we've had a few other thousand dollar+ fundraisers.
There is only so much you can spend on nice soap, warm socks and lip balm. It is also important not to overwhelm with stuff and clutter her partner will be left having to deal with. My solution to this is to raid Etsy for samples and send tiny things... a magnet, a tiny soap, a mini-pot of lip balm, four stickers, etc.)
More importantly, however, is this money being made available to her husband? Because he's likely facing mega bills for care, standard monthly household bills, unpaid time off work, and pending funeral expenses (which are crazy-pants).
I am so sorry this is happening, and entirely sympathetic to your group intent. As gently as possible, though, I would suggest that your focus switch to doing everything practical you can to help the person she's closest to - her husband - be as present and supportive as possible. Caring for him as he cares for her may be the best way to serve her now.
posted by DarlingBri at 2:06 AM on August 30, 2014 [12 favorites]
No you should not try to visit, because she's told you not to.
No, you should not tell people she's dying if she hasn't told people she's dying.
No, unwanted visitors to the door should not impose on the time of an exhausted dying woman with a handful of hours left.
There is a current fundraiser that has raised thousands of dollars already and we've had a few other thousand dollar+ fundraisers.
There is only so much you can spend on nice soap, warm socks and lip balm. It is also important not to overwhelm with stuff and clutter her partner will be left having to deal with. My solution to this is to raid Etsy for samples and send tiny things... a magnet, a tiny soap, a mini-pot of lip balm, four stickers, etc.)
More importantly, however, is this money being made available to her husband? Because he's likely facing mega bills for care, standard monthly household bills, unpaid time off work, and pending funeral expenses (which are crazy-pants).
I am so sorry this is happening, and entirely sympathetic to your group intent. As gently as possible, though, I would suggest that your focus switch to doing everything practical you can to help the person she's closest to - her husband - be as present and supportive as possible. Caring for him as he cares for her may be the best way to serve her now.
posted by DarlingBri at 2:06 AM on August 30, 2014 [12 favorites]
It is definitely important to respect her wishes. Don't visit if she doesn't want it, but send cards and letters and pictures and anything you think might give her even a momentary bit of distraction or pleasure or a laugh. Let her know you're thinking of her that way. When you call, take her lead when it comes to talking about anything, including her health. If she doesn't want to talk about it, don't. Talk about what she wants to talk about. If she doesn't want to talk, tell her you love her and will call again soon and get off the phone.
Also, I agree with DarlingBri: If there is something that might make her husband's life easier, aim to do that. If he confides in one or two people about her current struggles, I think it's disrespectful to break that confidence, so don't pass on the things he says to you about his wife's health (or anything really) unless you have his explicit permission to do so. If there's money donated or raised, hand it over to him/them saying that it is to be used for anything they might need.
I'm sorry you're losing your friend. I've been in the exact same place where you are and it sucks. In the end, it didn't matter what or how much I did for my friend, it never felt like I was doing enough or doing the right thing even. That seems to be part of the nature of this kind of grieving.
posted by GoLikeHellMachine at 3:07 AM on August 30, 2014 [1 favorite]
Also, I agree with DarlingBri: If there is something that might make her husband's life easier, aim to do that. If he confides in one or two people about her current struggles, I think it's disrespectful to break that confidence, so don't pass on the things he says to you about his wife's health (or anything really) unless you have his explicit permission to do so. If there's money donated or raised, hand it over to him/them saying that it is to be used for anything they might need.
I'm sorry you're losing your friend. I've been in the exact same place where you are and it sucks. In the end, it didn't matter what or how much I did for my friend, it never felt like I was doing enough or doing the right thing even. That seems to be part of the nature of this kind of grieving.
posted by GoLikeHellMachine at 3:07 AM on August 30, 2014 [1 favorite]
What you can do on Facebook is post, "Remember the time when we..." stories and hopefully they can be shared with her and remind her of good times you had and how much you love her.
What you shouldn't post on Facebook are messages like, "Think Positive!" and "It's all in the Attitude!" or any other platitude/feel good message that implies that if she changed her mindset she'd get better.
posted by kinetic at 3:55 AM on August 30, 2014 [12 favorites]
What you shouldn't post on Facebook are messages like, "Think Positive!" and "It's all in the Attitude!" or any other platitude/feel good message that implies that if she changed her mindset she'd get better.
posted by kinetic at 3:55 AM on August 30, 2014 [12 favorites]
Echoing some of the above comments:
When my wife was dying and I was her main caregiver, some friends bought me a few months of personal training visits. Helped my wife because it helped me cope, and in turn I was better able to help her; better resilience, better mood, etc. Got me out on a regular basis to do something to help take care of me, helped my perspective, made me a bit fitter. I'm still doing it.
I like to joke that as a present to my wife they had her husband refurbished. Kind of true though. I also know that from day one of the personal training I felt better able to cope, to stand up to the daily crises.
The way they managed it was to ask my wife if she'd like for them to do that for me, and at that point one of the things on her mind was about how I'd be without her - and so it was sort of "for her" too. Knowing I was (with a bit of prompting) taking care of myself was something she was able to let go about. In point of fact I'd probably not have managed to institute it myself. As time has gone on and I've continued, it's done all the things you'd expect in terms of keeping me moving through my grief and so on, but it also in some semirational way feels like something I can keep doing for her.
Just my experience, of course.
posted by aesop at 6:00 AM on August 30, 2014 [26 favorites]
When my wife was dying and I was her main caregiver, some friends bought me a few months of personal training visits. Helped my wife because it helped me cope, and in turn I was better able to help her; better resilience, better mood, etc. Got me out on a regular basis to do something to help take care of me, helped my perspective, made me a bit fitter. I'm still doing it.
I like to joke that as a present to my wife they had her husband refurbished. Kind of true though. I also know that from day one of the personal training I felt better able to cope, to stand up to the daily crises.
The way they managed it was to ask my wife if she'd like for them to do that for me, and at that point one of the things on her mind was about how I'd be without her - and so it was sort of "for her" too. Knowing I was (with a bit of prompting) taking care of myself was something she was able to let go about. In point of fact I'd probably not have managed to institute it myself. As time has gone on and I've continued, it's done all the things you'd expect in terms of keeping me moving through my grief and so on, but it also in some semirational way feels like something I can keep doing for her.
Just my experience, of course.
posted by aesop at 6:00 AM on August 30, 2014 [26 favorites]
I have also been through this. In our case, some members of the close circle of friends dealt with their grief by going into a kind of hyper over-drive of helpfulness that ended up being intrusive and placing an added burden on our sick friend. She was very private.... did NOT want other people doing her laundry, dropping in unannounced, showing up at the hospital, etc. At the end we collected money and gave it to her SO to use as they needed. I think we are culturally encouraged to DO things in face of loss and illness. But sometimes we just have to accept and acknowledge that nothing we do will make the loss and illness go away - it's hard.
posted by aunt_winnifred at 10:37 AM on August 30, 2014 [2 favorites]
posted by aunt_winnifred at 10:37 AM on August 30, 2014 [2 favorites]
I would suggest rather than visiting do personal videos. Sort of having your side of an enjoyable conversation remembering positive memories. Use a smart phone, and then post, or send to her husband. She will be able to watch them when she feels up to it, or not. And assuming all is positive and good, be there for the husband later too.
posted by Kitty Cornered at 3:09 PM on August 30, 2014 [1 favorite]
posted by Kitty Cornered at 3:09 PM on August 30, 2014 [1 favorite]
Be very clever and using available and simple on-line tools set up a way to always be ready with a person to deliver dinner [use non-return containers] or set up a pre-paid account with a local restaurant [s]. And see if anyone agrees that a recorder might be a nice idea those last weeks.
posted by Freedomboy at 6:09 PM on August 30, 2014
posted by Freedomboy at 6:09 PM on August 30, 2014
Offer housecleaning, prepared meals, other practical services to SO. Don't ask your friend. Sometimes people just want to be left in peace. That is frustrating for those of us who are about to lose someone we love. But it's not our death.
posted by Bella Donna at 2:08 PM on August 31, 2014
posted by Bella Donna at 2:08 PM on August 31, 2014
I am so deeply sorry to hear you are going through this. It's so cruel.
Just been (am still very much) going through this with very close friends. Organizing a meal train is great, massages (if she can handle them) are great for both of them, get someone to come to the house- it's a stranger, my friends was okay with that (obviously a massage therapist who is aware and comfortable in this situation) . Get her favorite restaurant to pack up her favorite meal with table settings and all if she can still eat.
If she doesn't want to see old friends, respect that wish at all costs. Do not intrude. Send bagels, flowers, stupid videos you have of her, pictures of her and her husband when they were young. Do not intrude. It will be painful for her to be seen not as she wants you to know her, it will be painful for her husband to not have every single one of her wishes followed. It is hard for you I am sure, but you just have to live with that pain and let her have whatever she wants. It's about her now- 100% all the time.
And take care of that husband. As Aesop says above, my experience is that a rigorous gym schedule is something that might just keep a grieving spouse from going nuts. Seriously. Get one of his buddies to offer to go with him, maybe? I don't know. It's like working the program or something. Because this one thing, that helps cope with stress, is also regular and constant. It will not leave or die. It can be trusted. And it will wear him out and hopefully let him sleep at least a little...sometimes. And help him find a great therapist and be willing to listen if he has dark things to say and...just hug all your people. Life. Ugh. It's so damn short.
And get everyone to go to the funeral. Get her husband as much help as he needs organizing and making it a celebration of her life in whatever way he wants it to be. Just be kind, be generous, accept anything weird he might want to do, tell funny stories about her, stand up and be heard as someone who loves/d her. Let her family know how important she was.
Again, my heart goes out to you. Young folks dying is hard as hell to watch. You (and they) will be in my thoughts.
posted by metasav at 8:54 PM on September 1, 2014
Just been (am still very much) going through this with very close friends. Organizing a meal train is great, massages (if she can handle them) are great for both of them, get someone to come to the house- it's a stranger, my friends was okay with that (obviously a massage therapist who is aware and comfortable in this situation) . Get her favorite restaurant to pack up her favorite meal with table settings and all if she can still eat.
If she doesn't want to see old friends, respect that wish at all costs. Do not intrude. Send bagels, flowers, stupid videos you have of her, pictures of her and her husband when they were young. Do not intrude. It will be painful for her to be seen not as she wants you to know her, it will be painful for her husband to not have every single one of her wishes followed. It is hard for you I am sure, but you just have to live with that pain and let her have whatever she wants. It's about her now- 100% all the time.
And take care of that husband. As Aesop says above, my experience is that a rigorous gym schedule is something that might just keep a grieving spouse from going nuts. Seriously. Get one of his buddies to offer to go with him, maybe? I don't know. It's like working the program or something. Because this one thing, that helps cope with stress, is also regular and constant. It will not leave or die. It can be trusted. And it will wear him out and hopefully let him sleep at least a little...sometimes. And help him find a great therapist and be willing to listen if he has dark things to say and...just hug all your people. Life. Ugh. It's so damn short.
And get everyone to go to the funeral. Get her husband as much help as he needs organizing and making it a celebration of her life in whatever way he wants it to be. Just be kind, be generous, accept anything weird he might want to do, tell funny stories about her, stand up and be heard as someone who loves/d her. Let her family know how important she was.
Again, my heart goes out to you. Young folks dying is hard as hell to watch. You (and they) will be in my thoughts.
posted by metasav at 8:54 PM on September 1, 2014
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When one of my good friends had cancer a few years ago, she really appreciated practical help. A lot of other kinds of support felt too draining.
In other words: keep doing what you're doing. Ask her husband if he needs help with anything.
I am so sorry that your friend has to die so young.
posted by ablazingsaddle at 11:48 PM on August 29, 2014 [3 favorites]