Advice Needed- Dealing with a looming death

[bikerz]

Amanda, I'm sorry for what you and your family are going through.

A friend of mine posted this list of things to do on her blog, after her nephew died of brain cancer. I found these comments to be very helpful when a good friend of mine was dying, both in practical and emotional terms.

Ten helpful things that people can do or say in times of extreme crisis or grief

1. Bring food, without asking. Leave it at the door with a note, if you don’t want to disturb. And bring food that can keep (frozen stuff that can be re-heated can be as good as a warm dish, since they’re not obligated to have an appetite right then and there).

2. Bring food in containers that DON’T NEED TO BE RETURNED. Can’t stress that enough. Otherwise the house will become a veritable Amway Depot of tupperware, pots, etc., each of which represents enormous generosity (which is good) but each of which needs to be returned. Or even stored somewhere. (Which is yet one more stressor or problem to solve.)

3. Step up, or if you can’t, find someone who can step up and organize other people’s generosity on behalf of those you’re supporting. Oddly, as everyone who’s lived through (or, bless you, are currently living through) a huge family crisis will know, a landslide of generosity, while an enormous boon, still needs to be fielded. And if you’re working on trying to save someone’s life, or trying to make out the smoky remains of a world that they just left, figuring out whether or not you need another plate of lasagna can often put you over the edge. Someone else who loves and knows you and your home can and should field the calls on the lasagna for you.

4. Employ the internet to aid in the support. You can find pre-fab sites that enable families to have an online “guest book” of words of support; more and more, simply starting a family blog can do the trick, especially if its design enables a user’s including additional pages, such as privacy-protected phone lists, calendars to organize who’s bringing what food when, etc.

5. Support the supporters. In other words, look carefully at the sphere of people who are affected by the crisis or loss, identify those who are doing the most work in supporting the key folks, and then support them. If you don’t feel close enough to the affected people, but want to help, rest assured that the helpers are spreading themselves as thin as they can and could use someone to buy them groceries, walk their dog, etc.

6. Unless they’ve asked for no phone calls, call. Leave sweet, short messages; just say you’re thinking of them. You could certainly ask whether they need anything, but that’s almost a formality. It’s the work of loved ones around those in crisis or grief to work really hard to try to figure out those needs. Unless they have superhuman powers, folks in crisis or extreme grief are unlikely to (a) be able to articulate just exactly what they need, and/or (b) be able to return your call for hours, days, weeks, months, maybe years. Take no offense, of course, but also by all means DO THE WORK OF GETTING BACK IN TOUCH WITH THEM, consistently. Even if they don’t have the energy to call back, they still benefit from the reminders of your concern. And when they are up to answering the phone, they will need your love.

7. Attend to the little creatures who may be forgotten or under-tended in the wake of the crisis or grief. Meaning kids, pets, even plants. Anyone who has lived through (or, bless you, is living through) crisis or extreme grief will know that kids show signs of stress and grief differently — differently than adults, and also differently than one another (see some of the links at the bottom of this post for more on this). But don’t think that because they aren’t crying, or talking about their feelings, they don’t feel the distress around them, and/or aren’t in distress themselves. So volunteer to be with them, restore their daily routine, etc.

8. Pay extremely close attention, however, to the changing emotional needs of the folks you are trying to help. These needs can be logical or illogical; predictable or unpredictable. It matters not. Until their world begins to rotate on its axis in the proper direction (and during crisis and in extreme grief it most certainly does not), it is not anyone else’s place to quibble over how to help them. So for example, if taking one of their kids out of the house for an afternoon at Chuck E Cheese’s seems like a good idea to you, and even to the kid, but it destabilizes the parents who need to have all their chicks counted and in the nest, try to think of some way to help divert the kids at the house.

9. When you’re far away and can only send your goodwill in a note or a gift, don’t worry about what to say. Really. Telling them the simplest truth is good enough: You are so sorry. You want to help in any way you can. You will be in touch. Many people may become quite upset if you say “I know just what you’re feeling” unless it’s really, truly, the case. Grief over loss is so, so idiosyncratic. Siblings, probably even identical twins feel differently over the same loss. No loss is the same. Your efforts to try to understand how they feel, and provide love, are good enough.

10. Be patient; indicate that patience to them. Help them to know that months and years from now, you will still be there. The worst thing in the world for a person to hear, when they’re struggling in the wake of a crisis and paddling across an ocean of grief, is “You should be feeling better by now!” As utterly obvious as that might seem to be, bizarrely, too many people hear that message. Either directly or by implication. They’ll be done grieving when they’re done. Meanwhile, help them find ways to live with their phantom limbs; sit with them; listen to their stories; help them feel fine about crying all they need to — if they’re the crying type (and help them feel fine about not crying, if they’re not). Hand them a hanky. Bring them water so they don’t dehydrate. Take a deep breath.

[Possegal]

I started a blog for my sister when she was first diagnosed. I had her look at it at first before going 'public' so to speak. She was OK with it, though I'm cautious to not say too much and we've yet to have a really bad scan, so I haven't had to cross that bridge yet. I'm privy to all info, being the medical person in the family (someone once called me her medical bodyguard, I loved that) I'm at dr appts and I'm teh one that does most of the calling and talking to them, they give me the copies and disks of all the reports and she calls me before doing anything. So I know it all, but realize that she doesn't need everyone to know it all.

But, the blog has proven to be quite helpful. Most of our cousins are in Canada and this way they can follow along with what is going on. Her friends get updates faster and without worrying about calling and not knowing if the news was good or bad. All and all, I'm glad I did it and would recommend it to other families spread apart and dealing with something like this.

There really have been some great insights from this group, what a great thing message boards can be!!

Now this reminds me I should go update my sister's blog, as today was her final Cyberknife treatment and I'm sure folks would like to know that.