I like this book: Deathing: An Intelligent Alternative for the Final Moments of Life
Indecisive,all condolence and heart to you in your illness. Truly wish the best for you in that struggle.
Last year, I was with a good mentor and friend of mine; an ace horticulturist, I working as his last intern/gardener in a maverick career. He was diagnosed with
a fatal disease, and really, long outlived the prognosis by several years. In the last year, he was getting weak physically, but ever sharp in mind. I always asked what I could do to help, but he was of a constitution that never complained. In the last months, we talked about it all, that he was going downhill, and he expressed the thought that it was so hard to ask for help. I could see the pissed off pain that he had to. He was stoic by nature, which is why he lived five years beyond the 6 month death diagnosis.
We talked about it, and I let him know I was absolutely there for him come what may, but he also hid the pain well, too. I trusted what he told me, and didn’t want to barge in. Called while he was in the last days in the hospital, wasted away, asked to visit, he said it was too much to deal with visitors, all he could deal with was treatment. I respected that.
Finally, he said, “OK, come visit” I was going out of town, and said I’d visit as soon as I came back. In that weekend, he turned downward, and passed on. I regret not coming sooner, even though he told me not to. Now, with that experience, I would just barge in, and visit. I so regret not being able to face to face tell him how much I
appreciated him, to say goodbye. He was so damn good at hiding his death, a gentleman, not wanting to be a pain to others.
I will never , though, respect those wishes again. I will just come on in and do extra help when needed, because I’ve seen this situation happen, now. I could have done more to help ease his pain of death, but was hesitant, as he was hesitant to ask for help.
Indecisive, any thoughts on the matter? When is other’s helping intrusive on your own process of thought during illness?
My parents, especially my mother, talked to us about their wishes, both for before and after death. Not as “let’s have a talk”, but just in ordinary conversations. Something would be mentioned, say like the Terry Shiavo(sp?) situation, and Mom would say, “I don’t want to be kept alive by machines.” Or we’d be sitting around talking and we’d find ourselves discussing funerals and burial or cremation. It might be that she was a bit more aware of it, because Dad was 15 years older than she. But nobody in our family ever acted like it was an uncomfortable topic.
When I started talking to my husband in such fashion, he didn’t like it. We have worked our way around to it, and I’ve talked to our kids on various occasions, but I’m not sure he ever really did talk with his parents. The whole idea scared his sister so badly she wouldn’t let it come up anywhere around her. She even had to go sit in the car when we went to their grandmother’s funeral.
I think it’s much healthier for everybody involved to treat death like it’s part of life, so to speak. I hope I’ll still feel that way when I get a bit older and it’s more a reality to look at. I’d like to be able to let my children talk to me, and I hope they’ll be able to listen to me, too.
I don’t think there’s any “so to speak” about it - death absolutely IS a part of life, and I agree that is is healthier to realize that (not to pick on you, thirdwarning 
). My husband and I have also discussed possible scenarios for if we get sick unexpectedly, and for when we get old and decrepit. We have a “shovel to the back of the head” pact - nobody gets forced to suffer endlessly when a lack of medical intervention will allow us to die quickly and with some dignity left. Of course, like most things, it’s easy for us to say that when we’re fairly young and healthy.
indecisive1, I will hold you in my heart and thoughts, and I wish you and your loved ones all the best. Perhaps you will find insight and comfort in the comment community formed within the blog by Leroy Sievers at NPR. Most commenters have late-stage cancer, and they are bright, interesting, supportive people. It’s not a whine-fest.
featherlou, your post reminded me of the following quotation I recently came across:
Life-and-death. Lifedeath. One event. One short event. Don’t forget.
– Robert Fulghum
In reply to several posts: Talking about my death doesn’t feel intrusive at all. It is a huge relief. It’s just so much to think about all on your own. As far as helping people, I say just go do it. I’ve had many people offer to do anything they can to help me, but being who I am I turn them away. I’m just fine I say. I don’t want them to worry about me and I don’t want to inconvience them. Silly isn’t it? I’ve had a few people just go ahead bring me some meals, arrange a get-together, or just come sit with me. Had they asked me before hand I would of said no. These things that they went ahead and did for me have been wonderful for me. Yes, there is crying and it is hard but I feel like I am getting the most I can out of what ever time I have left. I don’t recommend you go to your eldery parent’s house and redecorate it, or cut down there favorite trees or something, but asking how they would like there death, funeral, memorials, etc. to be conducted shows respect for there wishes and that you love them enough share some of their fear and pain.
I’m sorry about my lack of paragraph breaks!
{{{Indecisive1}}}
I wanted to share that I went through 6 years of “six months to live” with my late husband. He had congestive heart failure. The first 3-4 years were not so dibilitating, but the last couple were. We settled everything very quickly, when he was diagnosed with six months to live. It was very hard at first, but grew to be a part of our lives. Thoughts about what life after death would be, whether I would remarry, what do do with his remains, financial details… all were discussed. My son was involved in much of it. He was 12 when my husband was diagnosed. Whether or not we handled it right as far as my son was concerned - well, we handled it as a part of life. Just like discussing sex or any of the other miriad details of growing up…
IMHO, it needs to be talked about, and not hidden away…
Indecisive: Again, all good heartfelt thoughts to you in dealing with your illness.
In light of your response to my, and other posts; One thing I’ve taken to heart after my dear friend’s death is, if that should happen to me, to be in a position of relying on others for comfort and neccessary function in ultimate duress, I would let people help. People really Want to help, but, in our culture, it’s awkward, because Americans are strong and stoic and Can Do…, etc, but , ya know, that doesn’t really work in the scope of human sensibility. We need each other to flourish, even if flourishing in terminal illness means having help. I can’t speak for you, but…
Let that Can Do go, and ask for favors from friends and family. There’s no reason to go it alone, and to think you are a burden. I think basic human nature is nurturing, and if people want to help you, please let them. Ask for help, and like, if not love, what others want to do for you. Wouldn’t you do the same for a friend in need?
Depends a lot on the person.
Dad’s Mom lived on her own for over 20 years, since Abuelito died until one day when she announced to her children that she was moving to an old folks’ home since she had started to get bouts of dizziness and would feel safer in company. She’d done all the paperwork herself without saying a word.
A couple months later, I was leaving for the US and she told me “ay, I don’t know if I’ll see you again!” I said “yes, you will see me in Christmas.”
On January 4th, she kept mistaking three of her grandsons for each other (ok, they’re the same age, and all blonde and light-eyed, but still). She told me goodbye five or six times. The last time I held her tight and said “fare well, Abuelita.” I knew I wouldn’t see her again, and I didn’t, she died on February 25th (saturday).
Previously, we’d talked about deaths and births and anything in between; she was both a lady and a person who believed that social constrains are good only for as long as they work. She’d hear her SiL say “oh my God, dead at 84, so young!” and berate her “Margarita, I don’t care how old you and me are, 84 is only young if you’re talking about buildings!”
Mom’s Mom… she’s 93. Gramps, 92. He’s pretty much ready to go; she’ll make noises about “why go on living”, then the next moment learn something new and say what I’ve been hearing her since I have memory: “that’s why the old woman didn’t want to die, so many things left to learn about!” When she says “why go on living”, we claim bullshit. He doesn’t say anything about dying except in bravado (he loves reminding us that he’s donated his body to science, although that stopped riling her up ages ago). Last May 12 was their 75th wedding marriage. That’s 76 years of fighting… we reckon that, so long as their meals together continue to be yell fests, neither one is dying soon.
Last Saturday I discussed living wills with Mom, who’s in worse health than her parents. I know what she wants that-a-wise and my brothers would probably believe me, even if she never puts it in writing.
indecisive1, on behalf of the people you leave behind, thank you.
My parent’s will was in order when he died only because he’d finally caved in to her years of requests. She claims that one Feast of the Epiphany she was on it again and he said “damnit, how long are you going to harp on that? You’ve been badgering me about it for years!” “For. Seven. Years. To be exact. To the day, actually. And if I had to do it for seventy times seven, I by God would, only I don’t think we’re going to last that long!” The next day they went to have the will drawn.
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I hope that my 6 months turns out to be 6 years! maybe then I can get all this paperwork straightened out and clean up this darn house! i have so much junk, stuff I will never wear again, three poorly trained dogs, some really bad debts… And then I worry, worry, worry about just how sick I will get and how hard it will be to care for me then.
I feel like I’ve sent this thread away from the original question. But thank you to everyone for their well wishes.
My grandma (88) was in fine health until a year ago and it’s been downhill ever since. She was operated on then for an intestinal tumor and now they’ve found the cancer is throughout her. She also has compression fractures in her spine which are the current worst part. She just went into the nursing home and claims that she just wants to fall asleep and not wake up. She also has a living will that says don’t do anything extraordinary or artificially feed/hydrate. But they haven’t given her a terminal status so she continues to agree to treatments for dehydration, etc.
Anyway, she has been open about what we should do for her funeral, and as above, how much she wants to just go peacefully. Part of me says it’s all part of her being a control freak; she was fine for so many years and was afraid to die then, but now that she isn’t comfortable she wants to be able to will herself to die! She has done most of the talking to my father, who is her only child, who is also terrified of death. He has been doubtful about some of it but is doing pretty well respecting what she is saying. That’s all I figure we can do; she settled a lot of her affairs already (funeral and plot are paid for, etc.) so it’s just listening and making her comfortable now.
It’s interesting though because it makes all of us think about what we would want done, what kind of services, services are for the living and not the dead, declutter now so no one has to go through all this stuff!
No hugs please! We’re all trying to remain businesslike and emotionally detatched from it all. 
If it pleases her to plan for her own death rituals, this matter belongs under her control. She is still living.
With the illness that you have described, it is possible that it is more that that she “isn’t comfortable.” She may be in pain that is intolerable or she may be preparing for such pain. If she has ever suffered so much pain before, then she will have known to prepare for it. Where she feared death before, she fears something much worse now. Would you have her change her plans because you “aren’t comfortable” with them?
I know a doctor who made the same plans that she has made in case of a painful terminal illness. And that is what happened to him. What you have described sounds like the plan that I also wish to follow at the right time. It is not willing myself to die. It is allowing myself to die rather than suffer.
Are you sure that she is still terrified? Can you be strong enough to offer her comfort? I would want my grandchild to hold my hand, put lotion on my arms, legs and feet, wash my face, sing to me sweet songs, talk about old times together, read stories or poetry…Even when it seems that she can’t hear you, tell her who you are and that you love her. Let her know it’s okay to let go.
Try to comfort your father too. And give deference to him and be patient. I know this is all a tall order.
Keep your chin up. You can do this.
But at some point in the privacy of you own room, you must deal with your feelings – especially after she dies. Feelings of grief are also a part of living. When bad feelings are not dealt with, they can make us really sick.
I’m sorry, I didn’t mean to imply that I don’t respect her wishes completely. My asides are just my own take on it. She has expressed that she doesn’t fear death anymore, that she just doesn’t want to suffer. I happen to agree with no extraordinary measures but even if I didn’t, I respect what she’s asked for. My father does want extraordinary measures and while I wouldn’t want that for myself, I hope to carry out his wishes as best I can.
It’s tough too because she’s never showed much emotion and so she doesn’t allow the kind of interaction you’re talking about. We just don’t have that kind of relationship and it would be artificial to act that way now.
indecisive, you’re giving the thread a better perspective on the subject at hand than anyone else could. Please don’t think you’re hijacking it.
I’ve always thought that being told you have a terminal disease would be sort of liberating - no more dieting, no more worrying about finding a proper career, no more agonizing about your debts and how you’ll pay them and all that stuff, but it sounds like you trade one set of worries for another (yeah, I guess that’s kind of a “duh” moment).
The conversations my brothers and I have had with my parents have all been at their (my parents’) instigating and have all be very matter of fact and business-like: “We’ve made the following decisions concerning the disposition of the estate…Copies of the wills, life insurance polices, and funeral instructions are located in the safe…etc. etc. etc.” My parents have always been very careful to take care of the details in whatever they become involved with, and I believe they see their actions as a way to have everything tied up with a nice little bow so that we won’t have that “stuff” to deal with at the same time as we’re dealing with the emotional hurt of their passing. It will be sort of like the instructions that come with a model airplane. Do this first. Then do this. Then do this.
I do wish my late brother had been a little more forthcoming about his wishes and desires before he died. He died a long, lingering death from AIDS and it was INCREDIBLY draining for everyone concerned. I still have lingering guilt and pain from how I failed to help Mark when he most needed me.
My grandmother is 88 and failing rapidly. She lived alone for 35 years after my grandpa died and was very self-sufficient up until about a year and a half ago. She’s had a series of small strokes and is suffering from dementia, but when I talk with her before evening she is often lucid. (Sundowners Syndrome)
We talk about dying about once a week. Grandma was one of 8 children, and all her siblings have died. She’s lonely, she has no one to relive the old times with and my sister, mother and I just aren’t the same. She’s in a lot of pain, but worse, she has no independence. She can’t drive a car, bathe and dress herself, prepare her own food, etc., and that loss has been the most devastating. She can’t see very well and her hearing is so bad we have to shout. Then she complains that we always holler at her. (She refuses glasses and hearing aids)
She tells me she’s tired and wants to go. She’s afraid she says, because she doesn’t know what to expect (and because she won’t be around to keep the rest of us in line). She talks with me frankly about dying and what she wants done with her stuff, but for some reason the funeral discussion creeps her out. Every time we try to figure out what her wishes are re: funeral music, burial vs. cremation and other details, she changes the subject.
Maybe the discussion of what to do with her body is what is creeping her out (I can totally see that point). Maybe the way to approach that part of the funeral planning is to come to her with a finished plan based on your best guess, and tell her, “This is what we are going to do. If that is okay with you, you don’t have to say anything and we’ll just go ahead without bothering you about it any more, and if it isn’t, let us know and we’ll adjust it” to make it as easy as possible for her.
Thanks featherlou, I think that’s good advise.
I talked with my mother last night and she told me she found some documentation that Grandma has a burial plot all bought and paid for. It appears Mom found out that little tidbit a couple of months ago and didn’t mention it. One less thing to worry about.