prairiecrow

Thank you, everyone, for your kind words. They are greatly appreciated. My mother was indeed a very special woman -- as Kelly said, she wanted as much control as possible, and that was what she got. Blessings to all of you, Laurie

On Sunday June 3rd at 12:25 am, my mother passed away from complications of lung cancer. We will never know exactly what led to her death. Was it the bowel blockage caused by narcotics use (even though the doctors were pretty sure they'd gotten that cleaned out)? Was it chemotherapy, which had an impact on her kidneys and led to their failure? Was it the cancer leapfrogging ahead of us and attacking more of her body's systems? What I do know is that she lived the way she wanted to live -- independently -- almost to the end. She spent one week in hospital while they tried to get her pain under control (with only partial success) before being transferred to Riverview Health Centre's palliative care ward, where she quickly lapsed into a coma and died almost exactly a week later, passing away peacefully between one breath and the next. It was how she wanted to die, in the place where she wanted to be at the end. Insofar as anyone can be satisfied with the outcome of a situation like this, I am content. It was much, much sooner than any of us had anticipated. She had just gotten a "six months or less" diagnosis from her oncologist about three weeks previously. We thought we had more time... it was a terrible shock. The irony of it is, we were planning to get together on May 24th to put together her obituary and go over parts of the family history that she wanted us to know and remember. She went into hospital on May 21st, and was soon so doped up with pain medication that any such conversation would have been impossible. We are immensely grateful to the staff at Riverview, http://www.riverviewhealthcentre.com/index.cfm?pageID=1 who were nothing short of amazing in keeping my mother pain-free and providing support and comfort to us during her dying process. They even sent out a bereavement package afterwards, inviting us to take part in grief seminars if we desire to do so. I'd also like to thank all the kind people here at LCCC for your words of support and advice. I did not post here often, but I always came away from reading your responses feeling better about a bad situation. You have my thanks and best wishes for the future. This is my mother's obituary. BARBARA LEONA SMITH May 17th 1936 - June 3rd 2007 Peacefully, after a valiant battle with lung cancer, at the Riverview Health Centre. Barbara, also known as “Lee”, was known and loved by many for her skills as a library technician and as a teacher. She established three school libraries in Winnipeg and ran several more before retiring in 2000. Barbara loved music, gardening, and animals, and faced her diagnosis of cancer with great courage. She is survived by her daughter Laurie and son-in-law George as well as by her beloved cat Mina, and by many friends and former students whose lives she touched. No one who met Barbara could forget her intelligence, willpower, and kindness. In lieu of flowers, donations may be made to the Winnipeg Humane Society in Barbara Smith’s memory and in her name, toward purchasing a plaque in her honour. Please call 982-2041 for more information. Our sincere thanks to the staff at the Riverview palliative ward for their excellent and compassionate care. An informal afternoon of memories will be held at the Thomas Sill Auditorium at Riverview Health Centre, on Wednesday June 20th, from 2:30-4:30 pm. “In the arms of the Goddess, from death to rebirth, you shall go forth.”

Hello, all: Today my mother (who was diagnosed with combined NSCLC and SCLC in early September of last year) had her long-term prognosis meeting with the onc after restaging, and the bone and liver masses are back (although mercifully the lungs appear clear). They're going to try her on another round of chemo with a cocktail of three different drugs (Cyclophosphomide, Vincristine, and Doxorubicin), but the onc has stated that in her opinion, there's a less than 10% chance that this will have any effect whatsoever. So -- we have one last summer. But the time the snow falls again, she'll probably be gone. My mother seems pretty much "down" with this: she's told me repeatedly that she's been mentally preparing herself for such a diagnosis over the eight months or so since the cancer was initially detected. Myself, I'm not so sure about. I go from feeling numb to having white-hot ripples of emotion -- sorrow, grief, growing panic -- and then back to being numb again. Fortunately we live in Canada where the costs of palliative care and palliative care drugs are covered by the government, but still, I'm in turmoil. I don't know what to do for my mother or what to do to keep myself on an even keel so I can help her as best I can. Has anyone else had experience, good or bad, with the drug combination mentioned above?

Happy New Year to you also.

I'm glad to hear that Lucie was able to get in touch with you and comfort you. What a lovely thing to happen! Blessings, Laurie

It sounds like your mother is irrational and probably not in a good mental state to be making balanced decisions. Hating you for trying to take the best possible care of her is grossly unfair to you, IMHO. In the end, you might just have to accept the fact that in order to see to her best interests, you'll have to make her angry at you. It sounds like she's angry at you already, so I wonder how much you actually have to lose in making the exchange. I do wish you the best of luck and plenty of strength and inner fortitude! Laurie

I'm afraid I don't have a lot of advice to offer, only empathy and verbal support. I think you're a hero just for sticking it out this long, and know that you'll do what's best for your mother even if she doesn't recognize it herself. And also what's best for you! If you wear yourself into a nervous breakdown, you won't be able to lend her any support at all... Please keep us posted. Thinking of you, and wishing you strength and peace, Laurie

Hello beatit: Welcome to the community, you'll find a lot of good advice and support here. Best of luck to you and yours. Laurie

Yesterday I went over to my mother's place to do some laundry, wash her floors, and take care of some shopping for her. I visit her apartment a couple of times a week at least, to make sure that she has everything she needs and that the place is cleaned up to her satisfaction. My mother is obviously becoming increasingly frustrated with her position: while her mental confusion is clearing up, probably as a result of her GP dropping the dosage on her seizure medication to account for her impaired liver function, she's getting increasingly stir-crazy in her apartment and we'll have to see what we can do about getting her out and about a bit. Also, she's struggling with the calorie intake requirements she's under, having a hard time drinking enough Ensure and eating enough foods to bring her weight up (in fact, her weight is still dropping). This is a matter of no small concern, but unfortunately there's not a whole lot that I can do about it: ultimately it is her efforts and her determination that will make the difference. All I can really do is offer her emotional support. She's also talking about stopping chemotherapy because she associates her mental confusion and weakness with the first round of treatment she went through. I did point out to her that in fact her energy levels increased right after chemo, and that the mental confusion was (as her own GP told her) probably a result of too much Dilantin in her system. I hope she heard me; when my mother gets an idea in her head, it can be almost impossible to get it out! Later in the afternoon she was talking about going back to chemo again, though, so perhaps my input had some impact. It's very frustrating for me to watch her going through this process when I want to help her so much. Every so often she says that she "eats better when someone is here", but I can't be with her every waking moment -- I would have to dump all my studio projects since I can't work from her apartment, and it would destroy me emotionally (since I suffer from chronic depression myself and the stress would probably send me into a catastrophic tailspin). I just wish there was more that I could do for her, but I honestly don't see how. I'm sure other caregivers go through similar periods of frustration and helplessness. I'm her only child and there are no other relatives in the picture, so all caregiving functions fall squarely onto my shoulders. I alternate between periods of feeling able to cope and other periods of wanting to crawl into bed and scream into my pillow. Is this normal?

What a great article, Lori! Thank you for sharing it with us. I found it really encouraging after a very difficult week with my own mom.

I haven't seen this one on the board yet, and IMHO it's a true classic. ***************** Desiderata Go placidly amid the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story. Avoid loud and aggressive persons, they are vexations to the spirit. If you compare yourself with others, you may become vain and bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time. Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism. Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul. With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy. (Max Ehrmann, Desiderata, Copyright 1952)

I also think because I can't "see" her fight that I feel like she's not fighting as hard as she could be (or the way I feel like she should be) and I get upset with her. I don't show it to her but it eats me up inside. I feel like I'm too hard on her and that I may be making it worse or that I'm just a horrible caregiver. Am I too pushy with the doctors? How come I seem to do all the wrong things for her? How come everything I say seems to go in one ear and out the other with her? I hear your frustration clearly because I also have it with my own mom to a certain extent. Is your mother on strong painkillers? The Dilaudid my mom is on has really impacted her ability to think and reason, and to remember anything I (or anyone else) says to her. I'm trying to be patient with her, but yes, it's hard and sometimes I'm left feeling like the "bad guy" because I don't feel the way I think I "should" feel toward her right now. I don't think you can be too pushy with the doctors, though. You have a right to know what they're doing and why, and to ask as many questions as you feel you need to. I wish you the best of luck, and hope you can find it within you to be gentle with yourself in this very difficult time. Laurie

Hello, all: My mother has just finished her first round of chemo, and is currently taking Dilaudid for pain suppression. Last night (on her third and last day of chemo for this cycle) I called her up and was startled and frightened to find her extremely mentally confused, thinking that I was her mother and rambling nonsensically. After about five minutes she came "back to reality" and told me that my phone call had awakened her from a deep sleep so she must have been dreaming. She even joked about it, calling me "Mother" several times during our conversation, but the incident left me very scared. Does Dilaudid often cause this kind of reaction? She's been on it since the first week of December and had never been this bad before, although she was also quite mentally "fuzzy" on Wednesday and was very frustrated by this. Her GP told me it might also be due to sodium or calcium levels, and that he will test her for those next week when he sees her for an appointment, but still... I'm not sure how to feel or what to do, since my mother has always been as sharp as a tack mentally and this situation is even more frustrating for her than it is for me. Laurie

Peacelover, it certainly isn't your fault! You didn't know, and can't be blamed for that lack of knowledge. Hoping that your mom comes through it all okay, Laurie

Glad to hear it was something simple! Laurie

Hello, all: I have a question... Today when my mom and I went for her chemo briefing, her entry in the diagnosis field of her treatment sheet read "Small Cell and Non-Small Cell Lung Cancer". What does that mean, if anything, aside from the (pretty obvious) implication that she has both kinds at the same time? When her oncologist spoke to us last Saturday, she said that my mother had small cell LC, and mentioned nothing about non-small cell LC. Any advice or input would be appreciated. Thanks! Laurie

Although nothing compared to what dad must be going thru, it has been really hard not wanting the phone to ring or being able to really plan anything in case i need to be on a plane at any second. It's okay to feel frustration and pain of your own, or even angry and upset. I think that's part of the normal process, and I guess what I'm saying is that if you're being hard on yourself because of it -- don't be. When my mother-in-law and brother-in-law passed away (both from lung cancer), they each spent most of their last few days deeply asleep, with only very brief periods of lucidity. But it sounds like different people will react in different ways. Wishing all the best for you and your family, Laurie

My mother's onc recommended Ensure or Boost (liquid nutritional supplements) for days when my mom's stomach is a bit "off". My heart goes out to you and your family at this very difficult time.

Hello, Bobby: It's good that you found this community, you'll find lots of good advice, support, and information here. My own mother was just diagnosed with SCLC and is awaiting her first round of chemo, so I know where you're coming from. Hang in there, and best of luck to you and your loved ones! Be sure to keep us posted. Laurie

Hello lennonsgirl: Welcome to the board! This is a great place, you'll find lots of good advice and support here. Wishing you the best, Laurie

Hello, Cindy: Sorry to hear you've been having such a rough time of things. Hang in there! Laurie

Hello, Don: So terribly sorry to hear about your loss. Wishing your strength and solace in your time of bereavement, Laurie

Hello, Ned: "Thoughts on 'incurable,' 'inoperable,' and other scary words" sounds like a great title for an article. I'm looking forward to reading it when you have it done. Laurie

Hello and welcome, Chrissy: You'll find lots of stories of hope and healing here. Wishing you all the best, Laurie

Hello Ernie: Welcome to the board, and I'm sure you'll find lots of compassion and support here. Laurie