Cancer sux
August 24, 2010 12:12 AM   Subscribe

It's my sister vs. leukemia, and leukemia, it seems, may win. Muddled questions from a muddled brain inside.

The only death I've ever personally encountered was my grandfather dying at 90 of liver and prostate cancer. At the end he was in a hopital bed in his living room, taken care of by hospice and my mom, cathederized and wasting away and he'd lived a long life and died surrounded by his adult kids and grandkids. This, however is different.

My big sister is 40. She has a husband and a 9 year old son. She's been battling AML for about 4 years but was told today that barring a miracle (a full bone marrow match which hasn't been found since she was first diagnosed) the cancer will kill her, and probably within a year or so.

Needless to say, I'm both speechless and have a million things to say, but more than that, I have a million questions that I don't really know how to get answered. So I'm turing to you, MeFites, who are always there for me. In no particular order, I guess I'll start with these...

- What does dying of AML look like? I know it's different for everyone, but am I going to have to watch her waste away in pain and discomfort? I'd appreciate insight from anyone who's dealt with this particular diagnosis, but please share your non-AML-related stories, too. Somehow I feel like preparing myself for what we're about to encounter will help us get through it.

- How do we help her son deal with this impending tragedy? He is the light of her life and they are veryclose. I worry about how he's going to deal with her death after spending his entire life being bathed in her adoration and attention. If you were young when you lost a parent, what do you wish had been done better/differently? I don't want him to grow up regretting how we (his family) handled this situation.

- What do you say to someone who's dying when they look at you and say "I don't want to die."? I've been dealing with this question for years and it seems like now is as good a time as any to try to come up with an answer.

I've read tons of previous posts, dealing with parents and grandparents and friends and co-workers, but anyone who can shed some light on losing a close sibling so young would be really helpful. Or anyone who has any advice at all. Or who wished they'd known something they learned too late in this kind of situation. If there's not much time left, I don't want to spend it making mistakes.

Thanks in advance for all of your help, gang. I'm working on finding a local group to talk to but I doubt they'll be better than y'all.
posted by buzzkillington to Human Relations (29 answers total) 10 users marked this as a favorite
Buzzkillngton, I am so, so sorry. I am by no means an expert, but I lost a grandmother to this. You can MeMail me if you want more specifics. I'm really sorry.
posted by deep thought sunstar at 1:00 AM on August 24, 2010

I'm so sorry. I lost my only sibling, my little sister, to ovarian cancer 7 years ago this week. She was 27. My heart goes out to you and your family.

I have several things I can offer, but I have to go back to work. I will try to get back in this thread when I get home 0700 EST. In the meantime, MeMail me if you like. I am willing to be available to you (to the best of my ability) for advice/support over through the upcoming months.

I will say this now-- you are being very smart reaching out for help/advice/support early. It won't make the inevitable any easier when it comes, but you'll at least you will already have a network of supoport built up to help you.
posted by KingEdRa at 1:23 AM on August 24, 2010 [3 favorites]

I don't even know if this is good advice, but I think often about what I would do with a similar diagnosis. My kids are 3 and 6. One thing I think I would do if it were me (have no idea if it would be appropriate for your sister) is to write my kids a letter to be given to them when they turn 18. What they can understand now is significantly different than what they can understand as adults. And, your sister may be able to communicate things to her son that he will understand better as a young adult. Just an idea. And, I'm sorry.
posted by zachawry at 2:28 AM on August 24, 2010 [1 favorite]

I lost my little sister years ago. Losing a sibling is a special category of pain. I'm sorry you have to go through this.

What do you say to someone who's dying when they look at you and say "I don't want to die."?

Maybe "I don't want to see you go" is a start? Then crying your eyes out together?
posted by Harald74 at 2:28 AM on August 24, 2010 [7 favorites]

. . the cancer will kill her, and probably within a year or so. . .

Reading The Median Isn't The Message by Stephen Jay Gould should be very high on your things-to-do-list.

It's only a ten minute read, but offers a lifetime of humanity and wisdom in return.
posted by Neiltupper at 2:57 AM on August 24, 2010 [7 favorites]

I'm so sorry buzzkillington.

I would say for her son - I'm sure the future him would appreciate lots of images, still and video. Voice recordings. Maybe you can help them sort and make a collection together.
posted by gomichild at 3:07 AM on August 24, 2010 [3 favorites]

I'm sorry to recommend another book as I'm sure you'll have a list as long as your arm before long, but I can't speak highly enough about Jonathan Livingstone Seagull.

It seems like a weird book to recommend if you haven't read it, but it's so profoundly and deeply comforting I'd urge you to read it and, if you think it is appropriate, give a copy to your sister.

In the same breath, I would urge you in the strongest possible terms to avoid the movie they made of it. Unless you love Neil Diamond.

Sorry for the brief flippancy - I am very, very sorry that you and your sister are going through this, and I wish you both the very best for getting through it.
posted by greenish at 4:00 AM on August 24, 2010 [2 favorites]

How awful for you all. My sincerest best wishes for strength to help you through such a painful time.

I strongly urge you to read this article by surgeon Atul Gawande about talks and decisions in the final months.
My Mother died quite slowly over a few years of a different disease but the decisions we took about how to care for her and more importantly what she felt was important allowed us to go down a road that allowed her the dignity she wanted and the circumstances she deserved, and significantly helped us all heal and really appreciate the time we had with her as she was facing this terminal journey.

There is an amount of evidence now that quite a number of people who don't address the kinds of question he raises in that article suffer significant amounts of depession later. This is a journey for you all, with your sister being the centre.
posted by Wilder at 4:33 AM on August 24, 2010 [2 favorites]

I am beyond sorry for what you're going through. But your post made me stop procrastinating and finally register to be a bone marrow donor. That's all I can offer you, unfortunately.
posted by kpht at 5:19 AM on August 24, 2010 [17 favorites]

I lost my older sister to breast cancer two years ago -- she was 33. She didn't have kids, so I can't speak to that. I don't know if breast cancer is similar to leukemia, but basically, she slowly lost energy, spending most of her days on the couch. She wasn't in a lot of pain, I don't think, but she wasn't especially comfortable, and she was definitely bored and irritated with not being able to do anything.

At the end, it went quite quickly. I was taken a bit off guard because she was eating right up until the end, and I had heard from other people that cancer patients usually stop eating and then die a week later. One morning we were talking about whether or not it made sense to look into hospices, and a couple of hours later, she started to have trouble breathing and died shortly after that.

I'm so sorry for you. Please don't hesitate to MeMail me if you have any questions or if you need to talk to someone who's been there.
posted by cider at 5:52 AM on August 24, 2010

Regarding your second question, remain friends with your brother-in-law. I have seen people shut off a portion of their family after the loss of a "blood relative," and it has never made sense to me. Mourn with him, but also invite him to your house for dinner. Take him and his son to movies or events with your family. Make it clear to him that you view him as a part of your family.

If, later, he chooses to remarry, support that as well—I doubt your sister would want him to remain alone forever—and keep him and his family close to you.
posted by sonic meat machine at 6:37 AM on August 24, 2010 [9 favorites]

I'm sorry.

How do we help her son deal with this impending tragedy?

No matter what, it is going to epically suck. However, for most of human history it has been absolutely normal for children to lose their parents youngish -- to disease, to war, to accidents, to lack of medical help. Children can and do survive this and go on to lead happy lives, and for much of human history they had no choice but to survive it. There is no question that it will be the most awful thing he ever experiences. But there is also no question that he can get through it. A friend of mine lost her mother around that age, and I think one of the ways her family handled it badly (and there were some complicating issues; the mother died of AIDS from blood transfusion in the 80s when it was a heavily stigmatized "gay man's" disease) was that they treated her like she COULDN'T survive it ... so my friend was sure she couldn't. It took her years to come out from under that belief.

The hospital and/or local cancer organizations should have resources for families facing this (I have worked with a local one as an estate attorney, helping cancer patients understand their wills, etc.), including counselors and resources for helping children. I would definitely make copious use of them.

What do you say to someone who's dying when they look at you and say "I don't want to die."?

"I know. I don't want you to either."
posted by Eyebrows McGee at 6:37 AM on August 24, 2010 [2 favorites]

There are many possible responses to the statement "I don't want to die". I personally believe that people should retain a sense of humor even when dying
(the last words of Oscar Wilde: "either that wallpaper is going or I'm going")
and the following occur to me:
according to the Rolling Stones, you can't always get what you want, or,
in that case, I won't kill you, or,
I'll see what I can do. A serious response is also possible, which would be something like, the tragedy of the human condition is that nobody wants to die yet everybody does.
posted by grizzled at 6:46 AM on August 24, 2010

I can't even begin to put myself in your shoes. I am so, so sorry you and your family are going through this. The only question I can provide an answer for is this:
If you were young when you lost a parent, what do you wish had been done better/differently? I don't want him to grow up regretting how we (his family) handled this situation.
I was very young when my father died (I was 5, old enough to remember him, but young enough to not remember very much), and "in order to spare me the pain of loss" the rest of my family acted as if he had never existed. Then his entire family disowned me and my brother. I have no photographs of us together, no anecdotes to think about, no idea at all what he was like as a person (and still no contact with my grandparents, aunts, uncles, cousins etc on that side). I suspect your nephew will have much stronger and richer memories of his mother than I have of my father, but I urge you to talk about your sister with him. Tell him as much as you can, not just about her death (which hopefully will be a long time from now), but about her life. What she was like as a person in all kinds of situations- what kind of movies she liked, what kind of cake she liked best, what kind of sister she was when you were growing up together, how she hated the smell of [whatever thing]. Point out that he has the same artistic skill that she had or smiles the same way (or what have you). Give him an opportunity to know her, regardless of what happens. The radio silence is deafening, and when the adults refuse to talk about something it can become nearly impossible for children to ask.
posted by Eumachia L F at 6:48 AM on August 24, 2010 [2 favorites]

I am so sorry.

If there's one thing I really wish I'd understood when my father-in-law was dying (lung & throat cancer), it is that the timeline you're given is really, really just a best guess. We were told at the end, when he went on hospice care, that he probably had 4 -6 months, but he died in weeks. That was really hard on my husband.

I am so sorry for your family.
posted by endless_forms at 6:49 AM on August 24, 2010

Or who wished they'd known something they learned too late in this kind of situation. If there's not much time left, I don't want to spend it making mistakes.

I am so sorry too, buzzkillington.
And I think your approach here is absolutely fantastic.

It's ten years since I lost my beloved big sister (a long battle with bone cancer; her children were just hitting their teens at the time).

I still flinch - with bitter shame - remembering one mistake.
I thought my smart, rational sister wanted my real opinion of an alternative "therapy" a very, very annoying weepy and flaky friend of hers was pressing upon her towards the end. So I was vocal about my reasons for "knowing" it was a con - and my sister became enraged and very upset.

I was wrong - because I didn't listen to her properly.
She didn't remotely want me to tell her there was no medical rationale for "color cancer therapy".
She didn't need my witless negativity. She didn't care that her friend with the recommendation was - and still is - a silly, smothering fool. She wasn't rejecting any conventional treatment to try to book the color cancer therapy sessions.

If I'd listened more carefully, I would have heard her asking for me to say something like "well, you never know...".
Basically, I was indulging my own anger about the failure of conventional medicine to save my sister - by rubbishing what I knew to be expensive nonsense. (Which it was: and, in the end, the color therapy practitioner simply didn't turn up for the home visit appointment at my sister's house - because the practitioner said later, she was not feeling particularly well herself.)

My advice is simple: always listen to your sister carefully.

And having just read the amazingly thoughtful & helpful New Yorker article linked by Wilder (above), I can second its wisdom. This bit jumped out - the author is writing about doctors - but the surgeon's words apply to everyone taking the journey "with your sister being the centre" of that journey (as Wilder beautifully expressed it):

"There is no single way to take people with terminal illness through the process, but, according to Block, there are some rules. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them the best chance of achieving it. This requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much".
posted by Jody Tresidder at 6:55 AM on August 24, 2010

I'm so sorry.

In terms of seeing her die in pain and discomfort - try and tap into whatever hospice or palliative care is available in your area as soon as possible. In many cases, you don't have to wait until someone's last days to be involved with a hospice - they may have outreach workers or day centres. From what I know of it, hospital care tends to be aimed at keeping people alive as long as possible, whereas palliative care is entirely aimed at a "good death" - doing everything possible to alleviate pain, discomfort, sickness and fear, and listening to the needs of patients and their families, rather than assuming that the doctor always knows best.

They will also be able to give you sound advice on how to help your nephew, now and later.
posted by penguin pie at 7:10 AM on August 24, 2010 [1 favorite]

Oh, wow... I'm sorry. Your sister and nephew are lucky to have you around.

I lost a grandparent who took care of me every day before and after school at this age. I freaked out when I was told (she was in the hospital and it was serious, but no one expected her to die right then.) It upset my dad (her younger son) so much that he had me stay with friends of the family (actually friends of Grandma, who were also mourning) for a week while everything was taken care of; I wasn't allowed to attend the funeral and I don't think I've ever been to her grave. I wish it hadn't gone down like that; she was my favorite person on earth. Also not helpful: I was religious and my father is anti-church (especially my church, because it is my mother's church.) The "we can't ever talk about that, you'll have to walk to services by yourself if you want to go" era started here. Our relationship kind of fell to pieces, really; this was about the time when I was into deciding what I really believed and it was horrifying to know that he thought everything I had picked for myself was stupid.

I just remember feeling lost and powerless and more than a little disrespected by the adults around me (plus sad, etc.) I was a brainiac kid used to these power struggles, but the death and resulting changes (we moved into Grandma's house not long after this, my dad started dating seriously, everything of Grandma's disappeared into boxes...) made it all worse.

An adult who asked what I wanted and tried to help me get it, and listened without having an agenda and/or crisis of their own, would have been really nice. And a sense that it's okay to behave in ways that are unexpected (I was apparently kept from the funeral because I didn't cry enough - this is what my dad says now - though I remember a fair amount of screaming, that might be from my nightmares of the moment he told me.)

Oh, and it would be better not to break any bad news in car in a parking lot. The seatbelts and close quarters contribute to the "I can't breathe" sensation.
posted by SMPA at 8:17 AM on August 24, 2010

I lost my father to AML this May, 13 months after his diagnosis. I am likely one of the posters whose AML-related questions you have read before.

In my father’s case, he had been the recipient of a bone marrow transplant in October, but his leukemia relapsed in March. Additional rounds of chemotherapy were attempted, but at a certain point, there was nothing that could be done to keep him alive short of almost daily blood infusions. His death was very rapid once he discontinued the blood infusions – he received his last infusion on a Friday and passed away on Tuesday afternoon.

In the final weeks of his life, he was very tired. His appetite failed. He was a very courageous fighter and an excellent patient, so he was always trying to do whatever the doctors recommended, including eating when he didn’t want to and resting when what he wanted most was to stay awake and spend time with us. I would encourage your sister to do the same – the eating especially was important.

He was adamant about dying at home, so once he had resigned himself to the fact that it was not feasible to continue treatment, he signed up with hospice. My experience and perceptions of the AML dying process therefore are very much colored by the fact that he was in the home – I imagine the experience would be different in a hospital.

He was not in pain in the way that I have heard patients with other types of cancer often are. He was uncomfortable from being in bed for so long, because after about Saturday evening he no longer had enough energy to get out of bed.

He was bleeding internally and there was a fair amount of discomfort from coughing up blood. As his caregivers, his wife and I had to deal with most of the assistance when that would happen. I would strongly recommend that if you and the rest of your sister’s family (especially her child) don’t want to view this sort of thing, arrangements are made ahead of time to have another caregiver present. Our hospice arrangements only provided for infrequent visits from the staff to provide guidance on morphine delivery and moderate assistance with other tasks; the majority of his final care was up to us, and even though I was comforted knowing we were giving my father the dying experience he wanted, it was not something I was prepared for.

My father had been prepared for death in that he had made a concerted effort in his final weeks to tie up all loose ends. He certainly did not WANT to die, but he had accepted and dealt with this reality from the time of his diagnosis. When he began the active dying process, it was clear that he was having conversations in his mind with people who had already passed. Maybe your sister can talk with a therapist or social worker who can help provide comforting thoughts on the process of dying. I certainly know that I never felt equipped to offer much in the way of positivity to my dad with regard to his death, other than to promise him I would honor his memory and all he had meant to me by living the fullest and happiest life I could. I think it comforted him to know I would find a way to go on, even though I’d certainly never, ever let him slip from my mind.

We began giving my father morphine on Monday morning, and by the end of evening he was in an unconscious state. I truly do not think he ever was in pain, and as I said before I don’t think AML is typically as cruel on the body in its final stages as other cancers. I know that is not much comfort, but hopefully it can ease some of the sadness you are facing.

I am so incredibly sorry for your loss. I had no true concept of what a nasty destroyer of happiness cancer is until my father’s battle. I don’t have much wise advice regarding your sister’s son except to make sure he has as much time with his mother as he can in this final time, and make sure he is surrounded by love when she is gone. Losing my father when I am 31 has been a huge sorrow; a loss at the age of 9 is just devastating. Any special memories she can write down or share with him would probably be helpful. We took pictures with my dad up until his final weekend, and even those last shots are precious to me. Maybe take some photos and save them for a gift when he's a little older?

You are in my thoughts.
posted by DuckGirl at 8:44 AM on August 24, 2010 [3 favorites]

As the mother of a young son, I occasionally think (against my will!) about him having to grow up without me. People have touched on this, but I think leaving her son as much personal writing as possible is a great idea. Videos and pictures, too, but what about an FAQ of sorts? What might her son wonder about her when he's 15, 18, 25? What kinds of questions might he have wanted to ask her?

Think also about the son growing up and having children - especially daughters. What might they wonder about their grandmother they never met? (I have a grandmother who was quite a rebellious young woman - teen pregnancies, illegal abortions, worked as a shipbuilder in WWII, lived in the first integrated housing in Portland, struggled with mental illness - and I desperately wish I knew more about her from her own words). Can you help her come up with some questions and help her write? She could write mostly about herself, or maybe she could write about her son's childhood, stuff he might not remember.

I'm so sorry. I'll be thinking of you and your sister.
posted by peep at 9:38 AM on August 24, 2010

I can only speak second-hand, and only in regards to her child. I have a friend who died from bile duct cancer at the age of 38, with two very young children at home. (It was a week before her younger son's second birthday.) Her passing was incredibly rapid, something like three weeks from diagnosis to death, but she made some decisions that I think will make life easier for her family.

First, she hired a photographer and a makeup artist, worked with her doctor to get some medication to give her extra energy (it may have even been straight-up amphetamines), and spent two full days cramming as much "normal experience" into her life as possible. She and the kids made pancakes; they went to the park and blew bubbles; they fingerpainted, they danced around the living room to stupid music, they read stories together, everything you ever do with your kids. Over the two days, the photographer shot close to 5000 photographs, and the makeup artist was on hand to make sure that she didn't look sick in a single one of them. (this was important because the nature of her cancer left her really jaundiced; this might not be as critical for AML.) Her kids have those photos now, as a memoir of a "normal life," even though they were taken after things left normal behind.

Second, she hired a journalist to interview her for her life story, so her kids would be able to read it and know her even after she was gone. The journalist also helped her dictate individual letters to her children, to be read on every birthday until their 18th, and then their 20th, 25th, 30th, 40th, and 50th. I don't know how she found the journalist, but I think it probably wouldn't hurt to just call your local paper (or journalism school if you live in an area with a big university) and ask.

Colleen had a condition that predisposed her to this kind of cancer, and she knew it was a possibility, so she'd spent a lot of time thinking about what to do. It was very hard for everyone to accept that it was time to document her life rather than fight to save it, but it turned out to be a brilliant decision.
posted by KathrynT at 10:09 AM on August 24, 2010 [22 favorites]

My mother died two weeks ago from mouth cancer. We are much beyond the ages you are asking about, but it a really recent experience for me so I thought I might chime it.

It was a horrible and gruesome experience for her. She was disfigured by the cancer, and that was as bad as anything. She was a lovely but vain person, and I know that was awful. She kept a small mirror with her, and looked at herself a lot. I thought that was not such a great thing to do, but I never said that because--well, it didn't seem right. I read the article by Atul Gawande that Wilder pointed you to. It is a good article, I read it about two weeks before she died, but I found it incredibly painful to do so. But I am glad I did, it answered a lot of concerns we had.

My mother had hospice in at the end, when we knew it was hopeless to continue treatment. They kept her pain free, which was great. This hospice nurses came regularly and made sure she had all the drugs and other supplies she needed. They do a really good job helping people through the process--both the patient and the family.

She had called me at work at the end of May and told me that she had two months to live. It tore my heart out at that point, but it was a very accurate diagnosis. She had endured two years of surgeries, chemo and radiation. That whole period of time was really hard on me too.

When she finally died, I felt such relief and gratitude. I also can see the wisdom of reading Jonathon Livingston Seagull. That book changed my life in radically good ways. I was so astonished the first time I read it, I immediately read it again.

I am very sorry for you both, and hope that you make it through the experience with strength and courage.
posted by chocolatetiara at 10:21 AM on August 24, 2010

Can you make a record about the kind of things that have tied you together now and when you were younger? Maybe hide a Lifescribe pen in your pocket, and then save out the good bits of whatever reminiscences you share?

I agree that having some kind of record will be good for the kids later on, but creating it now -- after the diagnosis -- will make it stilted. Give yourself the biographer's task of gathering some great stories and then editing them down later on. When time hs passed, give them to your nephew.

Also, be an awesome aunt (which it sounds like you probably are already). Not a 24/7 fun robot Cruise Director Julie McCoy, but just present in his life.

I think about this a lot -- I have a *lot* of neices & nephews, plus four of my own kids -- and it petrifies me. God bless you all.
posted by wenestvedt at 12:53 PM on August 24, 2010

Many good responses in this thread. I'm chiming in to say that there's likely a hospital social worker affiliated with the oncology department where your sister is being treated, and that social worker is the best link to caregiving and grief support groups for your brother-in-law, nephew, you, and your extended family.

Also, whether or not she chooses to go the hospice route, your local hospices or hospice organizations (many are run by member organizations of the Visiting Nurse Associations of America). Here in Atlanta, where the VNA hospice organization is our largest hospice resource, Atlanta Hospice has a wonderful program for children - both kids who have lost family, and kids who themselves are dying. A friend of mine, whose husband died when their children were both younger than four, sent the kids to these programs for years until they suggested stopping.
posted by catlet at 3:29 PM on August 24, 2010

This is an interesting blog that I followed a couple of years ago, about a young man's journey with leukemia. It's a sad blog, but it's entirely from his perspective and might give you some insight into what the end stages of the disease look like. I would recommend reading from about January 2008 and forward, and it might give you an idea of what you may see.

I am so, so sorry that your family has to go through this. You are in my thoughts.
posted by I_love_the_rain at 6:18 PM on August 24, 2010

Response by poster: Thanks, everyone, for your advice and well wishes. I will keep checking back here and will keep checking my memail. I wish I could favorite all of these responses, they're so thoughtful and truly helpful to me right now and I will definitely set to reading, writing and recording as much as possible. Keep sharing if anything else comes to mind!
posted by buzzkillington at 12:18 AM on August 25, 2010

Jumping in again to add that I found a lot of useful information/support through the Leukemia & Lymphoma Society message boards. You don't even have to be a member to browse them, and you'll quickly find other patients/family members going through many of the same issues and even fighting the same disease. There were times that general cancer support groups were helpful to me, but there were times that I needed the specificity of information about AML, and I was able to find that through the LLS boards. If nothing else, you'll find it's an empathetic and understanding community that can help support you through any of the emotions you and your sister and her family might be feeling.

I've been thinking a lot about my dad's last few months since posting yesterday. All the time you and the family can spend with your sister will be so precious. Someone said to me during my dad's illness that the one positive thing about cancer is it gives you plenty of time to say goodbye, and while that really wasn't comforting at the time, it is absolutely true in retrospect. It doesn't make any of his suffering feel worthwhile, but it's true that we had opportunity to say and say again how much we loved each other, as well as deal with some past hurts that needed resolving.

I'll come back if I think of more that might be useful. Feel free to message me as well.
posted by DuckGirl at 8:30 AM on August 25, 2010

I'm not gonna read the other answers until I've got this down .. maybe not then, either.

You see, my mom died of pancreatic cancer about a month ago.

She, like your grandpa, had lived a long life (she was 75). That doesn't change the fact that her cancer was unfair, to her and to her left-behind family.

She was diagnosed in September 2009; she died in July 2010. That's ten months, which I expected would be long enough to get some things done, and she did do that. She finished a masterpiece quilt that she had been working on, on and off, since she turned 19 years old. She completed the gauntlet of a 50-year marriage, just five days before she died. She became a missionary to children in Belize after her retirement, a lifelong dream.

She was a strong, alive woman. She did not deserve what happened to her.

She remained strong throughout most of her illness. The last three weeks were where most of her visible falling apart happened; it was as if past a certain point, the cancer gained ground exponentially. Even then, she didn't stop doing what she wanted to do -- it only slowed her down until finally, seven days before she died, she could no longer get out
of bed... and from there, again with the exponentiality. It became more obvious every day that she was in massive pain, that couldn't be handled by the copious amounts of painkillers that home hospice supplied.

It was like watching her become a beautiful, terrible angel. Five days before she died, we noticed that her skin had turned yellow, seemingly overnight. Jaundice, because her liver had failed.

At three days prior, she was unable to communicate through anything other than moving her eyebrows. We'd tell her once for yes, twice for no, then ask her a question: Do you want more morphine? Do you want us to turn you a bit?... and wait for her slow, agonized movement of her eyebrow.

At two days prior, she could no longer close her eyelids or her mouth. This was the point, incidentally, that I decided if I ever believed in God, I would never forgive Him for what he "allowed" to happen to mom.

Because she couldn't close her mouth or eyes, she began drying out very rapidly. She no longer wanted water (she had stopped taking any food-like substance a week before). Hospice told us that forcing liquids would make things more painful for her, so we didn't force anything.

She also lost the ability to move her eyebrows, so we couldn't communicate with her at all. We continued to talk to her, but honestly couldn't be sure she was even still "there".

As she dried out, her eyes ... died, I guess. It was awful to see, and that's the last image I have of my mom ... eyes like filmed-over pieces of glass (you know how a film collects on glass that hasn't been cleaned in a long time?), yellow skin just barely covering her skeleton, mouth open in a pretty clear imitation of how you'd expect to see a skull. The only assurance that she was still alive was her chest rising and falling.

She lost so much weight that, at the end, her arms and legs were nothing but sagging skin, smaller than a thin blanket wrapped around a pipe.

Now that I've thoroughly depressed you ... there was also some good that came of this. Our entire family, mom & dad's four sons, their wives, children, and grandchildren, were together for the two weeks prior to her death, together with her, in her own home. It was a strange time of renewal for our family; we became very close ... and very sick, since we were all together in the same house for 12-16 hours every day.

The hospice staff were wonderful. They were mostly volunteers ... people that didn't get paid to play music, to sing, to do mom's gardening when she could no longer do it, to teach mom's kids how to help her in the bathroom, to help give her a sponge bath. I was witness to what I'd call a miracle of giving; they truly were angels.

I got to watch my mom handle her own death, bravely and stoically. I got to watch my dad break down in tears, time and time again .. showing that he, too, was capable of crying, of feeling loss. I can't tell you how much losing mom opened him up to the rest of his family; this is the diamond in the rough, the blessing despite immense loss and pain.

Her grandchildren were all around her, too. She loved children, and the younger grandchildren were able to handle it right up until she could no longer close her eyes ... then it was obvious that Cameron, the four-year-old, just couldn't handle it any longer, and his parents left him with friends while they stayed with mom.

I'm sorry this has gone on for so long. I feel like I've run out of stuff to say now, so I'll close this by saying: death is a terrible, stressful thing to watch; I wouldn't wish it on anybody, but the gains from being present, being there as much as you possibly can, are ... inestimable. You just can't imagine, until you've been through it, how it will affect you.
posted by dwbrant at 6:32 AM on August 27, 2010

Another quick comment: +1 for Jonathan Livingston Seagull. I sat by my mom's bedside and read it to her while she lay dying, and although she couldn't close her eyes, there was this poetic single tear running down her cheek as I finished the book. It's a book she had read back in the 70's, when I was still at home, and she had long forgotten it. Seriously, read it; you'll end up recommending it to your sister, and she'll love it.
posted by dwbrant at 6:36 AM on August 27, 2010

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