Advice Needed- Dealing with a looming death

[Aggie_Ama]

My family is unfortunate to have two people with incurable cancer. One is my husband's dear aunt who has cancer caught too late, it has already reached the bones. The other is his step-mother who had lung cancer they believed to be heading to remission. Instead it has produced two new spots on the lungs (too fragile from previous radiation to biopsy but assumed cancerous tumors) and has entered the blood. I am not sure about the aunt but his stepmom has been given 3 months to 3 years. The 3 years is only if another round of chemotherapy buys her extra time.

She is doing the chemo but has started planning her funeral, getting her things in order and last night asked my husband to assist with getting things in their home/garage ready for his dad to be a widower.

How do you deal with death when it is hanging in the room, just mocking you? His grandfather had cancer but we didn't get to see him after he went to hospice, it took him in a quick couple of weeks not months. My only experience with death has been unexpected (heart attacks, accidents and murder) I do not know how to help him with knowing it is coming.

[OakLeaf]

oh man. No advice, but hugs and prayers for you, your DH and all concerned.

[Possegal]

Man I wish I had an answer for you. I've said on here more than a few times, my eldest sister is battling lung cancer right now. She is stage 3b non-small cell. This means that she has had lymph nodes in the middle of the chest, on the opposite side of the tumor, test positive for cancer. She has no metastases outside the chest at this point, so treatment although unlikely to be curative, is to keep the tumor in check and hope it doesn't escape out of the chest. Lung cancer likes to go primarily to the bones, the adrenal gland, the liver or the brain. So every scan I hold my breath as I read the reports and look for something in any of those areas.

I work in the field, so I am all too aware of the odds and the numbers. When she first met the oncologist, he told her that her stage of NSCLC has a median survival of 22 months. That basically says that at 22 months, half the people with her stage and type of cancer will be dead. We are at 13 mnths now. Those first few weeks were very tough on her and everyone in the family. Now, I guess you could say we have fallen into a groove of living 3 months to 3 months (when they scan to look for disease progression), hoping for the best but always remembering what we are dealing with. A good scan, I say OK, we have 3 months, what should we do? She's going on a long weekend trip this week with my brother in law. She's got a few things on her "bucket list" that I'm trying to arrange for her. She is going to be at the finish line of the Livestrong Challenge this year, which my family and I ride in her honor. I never thought last year that that would be the case, but she's fighting hard and doing pretty well, so she plans to cheer us on!

I can tell you from my experience, one thing you have to do is let the person 'get their life in order'. Don't do what I think most folks want to do, which is say "oh don't talk like that" and try and avoid it. It is sad and painful and so terribly difficult, but I always let my sister talk about the end. I've promised her I will make sure her family gets through it, I will make sure she doesn't suffer, I will do whatever she needs me to do and I let her talk about all those things. We don't dwell, but it isn't far from our minds.

I told her the first week she was diagnosed that she should live each day like she doesn't have many, while we fight with everything she, I and modern medicine have to get her more time. It becomes all about buying more time.

Not sure if that helps much, but I do feel your pain. I always figure that either way of dying (unexpected or drawn out terminal illness) have their pros and cons. The pro of this type of death is that you have no reason to have anything left unsaid. It is a small gift compared of the pain of watching someone battle for time, but try and take advantage of it.

Good luck and prayers to you and your family.

[Flybye]

SO Sorry to hear about your situation.

There are some good resources at this link:

http://www.hospicenet.org/

Also, at this time of year there are a lot of benefit rides, walks, and fun runs. Would it help to do one in each of their honor?

Rent all of the funny videos that you can. Celebrate the last of their lives with them. It sometimes seems so unfair that life keeps moving on while someone is dying or after someone has died. I think that would be the most difficult thing to deal with as a terminally ill person. Sorry, wish I could help more.

[Tuckervill]

I love Possegals advice. Don't avoid talking about it.

My dad's twin had cancer the last 3-4 years of her life. I never got to see her much before that, but those last few years were great. She was very up front about it. We helped her write her obituary at one family gathering. It wasn't sad at all.

I learned one thing about this kind of thing while my son was in Iraq. I was so devastated by it all. It's a little different than an impending death, because I truly was not the victim--but I felt like one. And because I felt like the victim (a mother facing the possible loss of her child), I really was not capable of taking care of other's emotional needs around the issue. I couldn't stand to be around my mother, who was also a basket case about it. I needed her to care for me, not ook out her stuff on me. I only wanted to be around people who were there for me. It sounds really selfish, and maybe it was, but I needed that space for myself.

So I would say don't go around all teary-eyed in their presence, and don't be over-solicitous towards them. Treat it as a fact, and let them lead you. Smile, be yourself. Be real.

Karen

[Irulan]

How do you deal with death when it is hanging in the room, just mocking you? His grandfather had cancer but we didn't get to see him after he went to hospice, it took him in a quick couple of weeks not months. My only experience with death has been unexpected (heart attacks, accidents and murder) I do not know how to help him with knowing it is coming.

Perhaps a change of attitude ? Instead of "death mocking you" perhaps embracing the idea that every one dies at some point, and that it IS inevitable? Work with the family, as stated, to get affairs in order and to celebrate the life that has been lived. Death doesn't have to be a horrible finale, it can be another ( big) step on the road of life.

I.

[Geonz]

When my father's cancer came back after a 16 year remission, he made a video. ONe line from it really stands out: "The best way to die joyfully is to live joyfully." People honestly did drop by to cheer themselves up. With my mother it was more difficult; she didn't want to leave without some things taken care of. We talked about them and in the last week frequently gave her permission to leave us and told her hte things we'd be sure to take care of.
We are all going to die. Death is here... regardless. It's kinda like that huge hill on a bike ride - the more you look up the harder it is; if you keep the pedals moving and shift gears at the right time, you'll get through it.

[Brandi]

I have a very good friend who lost her sister to a rare cancer at a very young age and had it loom over their families head for about a year. They celebrated her life the whole year as much as they could. And were around her every minute they could be but never stopped living their own lives which is what she wanted and told them this.
It was not easy when she did pass. But everyone got to say thier good bye's and that is something we don't always get to do, so in some way that seems cool that you will get to do that. No regrets you know.
My prayer's are with you and your family as well. I hope it is an easy transition for all of you.

[wannaduacentury]

My family is unfortunate to have two people with incurable cancer. One is my husband's dear aunt who has cancer caught too late, it has already reached the bones. The other is his step-mother who had lung cancer they believed to be heading to remission. Instead it has produced two new spots on the lungs (too fragile from previous radiation to biopsy but assumed cancerous tumors) and has entered the blood. I am not sure about the aunt but his stepmom has been given 3 months to 3 years. The 3 years is only if another round of chemotherapy buys her extra time.

She is doing the chemo but has started planning her funeral, getting her things in order and last night asked my husband to assist with getting things in their home/garage ready for his dad to be a widower.

How do you deal with death when it is hanging in the room, just mocking you? His grandfather had cancer but we didn't get to see him after he went to hospice, it took him in a quick couple of weeks not months. My only experience with death has been unexpected (heart attacks, accidents and murder) I do not know how to help him with knowing it is coming.

{{{{Aggie Ama}}}}} There is no good way to deal, you just have to bear it. My dad died last may from pancreatic cancer and I watched him wither away. I know it's hard, do the best you can, spend as much time as you can with your loved ones. Many prayers to you and your family. Jennifer

[milkbone]

I'm so sorry for you, my prayers and thought are with you...

My father died of cancer 3 years ago, (doesn't seem that long though), it was a sudden diagnoses and too late for any treatment. I am the baby of the family and they kept it from me for a couple of weeks before I ever knew, they gave him a few weeks to the most 3 months...he finally passed after 6months in a wonderful hospice center...it wasn't easy, and knowing/looming was heartbreaking but I was thankful for it in a way, to have those moments to talk, to share....but it in no way made anything any easier when he did pass.
I know someone else said it, just listen, be there, be the shoulder to cry on, he might even get angry, just try not to take it personally. Try to embrace the time you have with them...

Hugs...my prayers and thoughts are with you.

[spokewench]

It is hard, hard hard and I wish you luck with how you deal with "living with impending death" I too am dealing with these sorts of things now too. I have two brothers in law who have stage 4 colon cancer and my father is 90 and the one kidney he now has is not functioning very well so his time is limited too.

I just make sure that I am available to anyone in the family that wants to talk. I am open and accepting of the limits that being sick and taking care of the sick present for the closest people involved. You must be upbeat but not unrealistic and live the moments that you have with them with candor and joy. Do not treat them like they are dead already. It is so easy to try to avoid talking about the issues of death and sometimes to avoid the person who is ill; but mostly just be there, be open, be honest, don't be afraid to ask questions and offer your understanding and sympathy. None of us can truly understand what it is like unless we are in the situation ourselves, but we can do the best we can by being there to talk to and help.

Hang in there. That is what we all do

[Dogmama]

. My only experience with death has been unexpected (heart attacks, accidents and murder) I do not know how to help him with knowing it is coming.

You don't have to do it yourself. Hospice staff are wonderful people and can ease the transition. Enlist help.

My DH was diagnosed with colon cancer between stage 3-4 almost 5 years ago. Statistically, he shouldn't be here. Surgery led to a MRSA infection so chemo was delayed. Chemo landed him in the hospital with dehydration. A year later, he had his hernia repaired (where he tore out stitches from throwing up.) I had to learn how to be a nurse real fast, as I did sterile bandage changes, vancomysin (sp?) into his drip IV, etc. Oh, and I held down my stupid job, often doing payroll in the ICU waiting room.

I found a caregivers class where I could vent everything I couldn't say to anybody else because I was too ashamed. Some days, I wanted to just walk out the door & keep walking. I was (and am) still madly in love with him - but the pressure was unbelievable.

I would urge you to find some outside help for yourself. The airline attendants tell you to put your own oxygen mask on first before you help another. Go get your oxygen mask.

Love and prayers to you & yours...

Kim

[DDH]

Wow Kim, what a strong person you are. I don't know if I could find that kind of strength and I hope I never have to find out.

Aggie, I don't have much in the way of advice other than to be there for you to be there for your husband as he goes through this. It's a road I guess we all eventally will have to take with someone in our lives, and as hard as it is, and sad as it can be, I would tell anyone going through it to try to find joyous moments to cling to and remember.

[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.