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A place to talk death and dying issues

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  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2011
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    The Palliative care nurses are great and they will try to organise things to make your life easier.  Yes it is a little confrontational to begin with but it is also freeing once you've done it.  Good luck.

    Love n hugs.  Chrissy

  • ma111
    ma111 Member Posts: 167
    edited June 2011
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    Corian68,

    Thanks for sharing your story about your grandpa. I don't want to die but know I will. It is nice to hear stories of peaceful deaths. I so hope it is peacful for my daughter and I.

    Thatlife, I also found that there is not help avaible when you are able to talk and walk into the doc's office. I will check to see if our local grocery store has home shopping, Do they charge extra?

    Sas, I also think we all worship/pray to the same God regardless of our relgion and we will all see each other later.

    Crissb, thanks for the information. I din't know we could registar with Pallitive care while on a vaccine trail or other treatment. I thought we had to wait untill the very very end.

  • heidihill
    heidihill Member Posts: 1,856
    edited June 2011
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    This IS a morbid thread! But I can't stop reading.

    I like to think my daughter escaped the Tiger Mother Syndrome because I was too sick and therefore could enjoy childhood pleasures more. Instead of two hours of violin, 20 minutes was fine. No extra math problems. Not everything is about academics all the time. We have a lot to teach them beyond school stuff. I forced my daughter to take walks with me and listen to my lectures on life. This seemed more important to me than preparing wills and stuff. But now that I'm stronger I should get more on the legal and financial ball. When I'm done de-cluttering.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2011
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    Ma111, I don't know if it's the same in the States but here in Australia if you are having problems and are stage IV you can register at anytime.  It wouldn't hurt for you to check it out anyway....nothing ventured, nothing gained.  Good luck!

    Love n hugs.  Chrissy

  • thats-life-
    thats-life- Member Posts: 169
    edited June 2011
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    LOL heidihill...morbid!...and what is a tiger mother???

  • thats-life-
    thats-life- Member Posts: 169
    edited June 2011
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    this place isnt morbid! its a safe place where we can discuss the hard stuff...though your first line did make me chuckle :)

  • ma111
    ma111 Member Posts: 167
    edited June 2011
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    Heidhill,

    Your first line made me chuckle also, it is a little morbid, however we need it. Spending time with your daughter is very important!!! Glad you were able to. I find it a stress relief to be here and I am getting a lot of good advise. I still need to buy the Hallmark book.

    Crissyb, I will check into the pallitive care thing, thanks for the needed advise.

  • heidihill
    heidihill Member Posts: 1,856
    edited June 2011
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    Tiger Mother refers to a parenting book by Amy Chua. I like this review of her book by a New York Times columnist. I haven't read the book though.

    http://www.chron.com/disp/story.mpl/editorial/outlook/7387295.html

  • palaminoridesagain
    palaminoridesagain Member Posts: 36
    edited June 2011
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    Good Morning.  I am relieved to find this topic as everyday is an emotional battle.  I tried talking to my husband once about funeral arrangements but he would have nothing to do with talking to me.  I don't ahd POA, Don't have a will but then I don't have anything as I have lost everything.  I  too still work so I can have insurance and I cover my husband..

    I am scared.  Wish I knew what it is like to die.I am thinking of donating my body to medicine.  Maybe we could find a cure.  God bless all of you.

    Nicki 

  • divinemrsm
    divinemrsm Member Posts: 6,146
    edited June 2011
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    It's been almost 6 months since I found out I was stage iv.  Since that time, I occasionally have dreams that include people I know who have already passed on.  My DH and I had a dog "Tippy" when we first married that eventually died.  Tippy showed up in one of my dreams after I received my dx.  Then another time, the dad of one of my childhood friends was in my dream.  He passed away over 30 years ago.  He was a very sweet man whom all the neighborhood kids loved growing up.  And one or both of my parents who both passed over ten years ago have popped up in my dreams.  

    It's not every night that I dream of these dearly beloved departed ones.  And its not scary or creepy, it's just part of my dreams from time to time.  It's not something that had really occurred before. 

  • Fitztwins
    Fitztwins Member Posts: 144
    edited June 2011
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    I have had grand parents that have passed show up in dreams. I think it is them talking to me.

    Also, I have read these books to help me process.

    On Death and Dying. (about Hospice).

    Don't Kiss them Goodbye and We are their Heaven  (the TV Series was based on the Author)

    There is a website that you can fill our your final wishes..funeral songs, gifts, etc... If I could only find it again.

    I did write my own obit...and said they better publish a decent picture.

    The jury is still out where I will spend my final days if I have control. If my boys are in HS, it will be at home, I think they can handle it, but they are only 10 now, so I don't think I would choose it right now.

  • Suze35
    Suze35 Member Posts: 559
    edited June 2011
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    Like many of you, I also have a personal story that brings me comfort...



    When my stepfather was in hospice dying from Alzheimer's, one of the nurses stopped my mom and asked who "Gladys" was. My mom was a bit shocked, and told her that was Richard's mother, who had passed 3 years earlier. The nurse told her that he had a lucid moment and told her he was enjoying his visits with Gladys. My mom knew then the end was near, but it brought us all great comfort to know that he had his mother to be with him in those final days.



    I believe that something happens when we die, that we do indeed move on to a different existence, I just don't know exactly how or why. This will sound very morbid - but I am actually very curious to know. I don't WANT to die anytime soon, that's for sure, but it doesn't necessarily scare me. What scares me is what I am leaving behind. I hope that makes sense!

  • Chickadee
    Chickadee Member Posts: 469
    edited June 2011
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    Suze35, I perceive it in a similar way.  I have no great concept of anything beyond death but what upsets me is the unfinished business and loved ones left behind.

    Funny, I'm so sure that if my husband died I would manage but I arrogantly think that if I die, he will be a basket case.

  • corian68
    corian68 Member Posts: 86
    edited June 2011
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    Thatslife

    ;) There really should be more resources available to you, you can't be the only one in your area that could use some help, errr! I agree with Chrissyb resister with palliative care. They will have people to shop, light house work, whatever you need really. There was a patient where I worked that had advanced cancer, diabetes, COPD. ( mess) before she began palliative care, she thought she'd have 6 mo's to a year. She was also 89

    She lived nearly 6 more years on hospice. We would sit and talk for hours, we were both convinced she continued to live and enjoy life because of the care she received. When you begin palliative care our Souls are cared for too & they help you daily or weekly. Obviously treatment stops but your mind, body, spirit care begins. You have your own team: M.D , social worker, nurse, volunteers, chaplain, some provide meditation/ Reiki. When you are ready they are there waiting to help.

    Peace- Corian

  • corian68
    corian68 Member Posts: 86
    edited June 2011
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    Fitztwins



    I have read that book by Allison D. Great book. Also Steven Levine has great books about end of life. I believe that our loved ones come to us in dreams. Since I was young I have dreamed of them. One time I woke to find my dead Grandma sitting on the edge of my bed. Try to explain that to people haha! A year ago last May a girlfriend had tickets to see an Intuative named Lisa Williams. I went, she was Fabulous!!!! At the end I got to meet her. She gave me a hug & said " you have the gift , ( i believe we all do) when you see things and hear them...believe it" it's sounds crazy I know. She then told me the coming year would be tough and to be vigilant and strong!

    Ok...great....that sucks. In Oct. Is when I found my beast in my breast. No insurance and getting a doctor to listen was almost impossible! Finally got a mammo & ultrasound. Then radiologist said " it's not a tumor not a cyst or fatty, let's wait 6 mo's and recheck" really? Yes, really...no biggie he said.

    That night I woke up hearing. " no! It is a biggie" didn't know who's voice but it startled me.

    Long story short...I had to beg borrow and almost steal to get a biopsy Dec.15 th. To reveal a 1.5 cm malignancy. Then 2 more months for BLMX.

    I know in my heart that ' someone' warned me in the middle of the night.

    I always listen now and feel grateful when I dream of my loved ones :)

  • sincitydealer
    sincitydealer Member Posts: 51
    edited June 2011
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    I've posted this experience before but thought I'd repeat it on this thread.  Some of you might blow it off as the vivid imagination of an old lady.  I know I did when I first heard it, but some might take comfort in it.

    When I was in high school back in the mid 60's (that's right, I'm old, LOL) I was dating my first husband.  His grandmother described the first "Near Death Experience," I had ever heard of.  This was an old German country woman who had never heard of such things so I take what she had to say as the whole truth.  She told me when she was young back in the 1920's she had a surgery that went terribly wrong, and she died on the table.  One of the doctors even went out to the waiting room to tell her husband she was gone.  Somehow they did manage to bring her back, but while she was gone she described much of what we have heard about "Near Death Experiences" today.  She said she saw what she described as a narrow dark staircase with a very bright light at the top.  She started to climb that staircase while looking back and watching them work on her body.  An "out of body" experience.  She said she made it almost to the top when something called her back down.  That's when they revived her.  This was not a woman who read books or watched much TV.  This was also the first time I'd ever heard of something like this.  At first, being 16-years-old, I thought "Yeah right," but she repeated this experience to me several times always with tears in her eyes.  She cried every time she told it.  It was that real to her.  Since then there's been lots of information about "Near Death Experiences," but this was back in the 1960's and very little was known about it then.  A rather uneducated country woman would not likely have heard of anything like it.  To her the experience was very real.  She would tell anybody who would listen, and she'd been telling it since the 1920's when it happened.

    Hearing something like this from somebody I knew so well, somebody who had personally experienced it tells me that there is something more after we leave this realm.

    Peggy

  • desdemona222b
    desdemona222b Member Posts: 90
    edited June 2011
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    Just wanted to say that I did a simple will on Legalzoom.com for only about $70.  All you have to do is have it notarized once you receive it. Very easy and you can be sure your family is protected from the legal hassles if you die intestate.  I had a friend in Texas who died intestate and they didn't have much of anything, but it was still just the biggest hassle for her.  Everything did not just go to her automatically, there were lots and lots of court dates and problems - it just about killed her.

  • desdemona222b
    desdemona222b Member Posts: 90
    edited June 2011
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    Meant to say her husband died intestate - sorry.

  • corian68
    corian68 Member Posts: 86
    edited June 2011
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    Sincitydealer

    fantastic story!!!! Thank you  Cool

  • ma111
    ma111 Member Posts: 167
    edited June 2011
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    palaminoridesagain, I think it is normal to be scared, I know I am. i would like a peaceful death like is described on this post a few times. I am sorry your husband doesn't want to talk. Maybe your living will can be done and you can put it on your chart at your doc's office. I did find it a stress relief to get some stuff done.

    Others, I find the dreams intereasting to read about. That tells me we will go see loved ones when it is our turn.

  • lorieg
    lorieg Member Posts: 79
    edited June 2011
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    I had a lot of catching up to do on this thread as I have been on vacation.

    Tears have neem streaming down my face.  Thank you to everyone for sharing their stories.

    I am not so much scared to die as I am scared to not be living.  I think many of you can relate.

    Hugs,

    Lori

  • edwards750
    edwards750 Member Posts: 1,568
    edited June 2011
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    I am not Stage IV but I know that we are all going to suffer the same fate...dying. I may not die but breast cancer but obviously I will die from something. And the thing is just because I have early stage BC is no guarantee either. It can come back. I cant say I am prepared for it but I have accepted that it can happen. You guys are so courageous. A lot of you have young children which makes it even more tragic. My youngest is 21. I think exactly the same way you do chickadee. I dont think it is arrogant to say you could handle losing him better than vice versa. That is exactly how it would be for my spouse and I. He is smart and has a good job but totally out of the loop for handling finances or even interracting with our youngest son. I have begged and pleaded and threatened and he will agree but never does anything about it. I shudder to think what will happen. He was in the Trauma Unit for 3 months; they saved his life several years ago and I had to handle everything. I managed but I dont think he could have. YOu guys are so courageous. I am praying for all of us - especially all of you. Remember what Jimmy V said...(if you know who he was) never give up....diane

  • Suze35
    Suze35 Member Posts: 559
    edited June 2011
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    Lori - yes, that is it exactly. I'm scared of what I won't be here to do - raise my kids, love my husband... I know in time they will be okay, but it saddens me beyond belief to think of someone else raising my kids, sharing the future I had planned with my husband...even though that is exactly what I would want for them, to find love again.



    Chickadee - I was arrogant enough to think that my husband would be the one to die first, I don't know why.

  • thats-life-
    thats-life- Member Posts: 169
    edited June 2011
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    For ma111 and those with children..i copied this out from a book i borrowed "When a parent has cancer" (cant remember the author, but she lives with stage IV cancer.) i wanted to write it here, as it helped me tremendously..one other line from a book, which also helped me..."pity is poison to children"

    * when my children work around my limits, they are learning flexibility

    * when my children respect my special needs, they are learning tolerance

    * when my children tend to my needs, they are learning compassion

    * when my children wait for me when i am slow, they are learning patience

    * when my children see me as a whole, they are learning about self love

    * when my children pick up the slack, they are learning about team work

    * when my children fend for themselves (when they are perfectly capable of doing so), they are learning self sufficiency

    * when my children deal with my setbacks, they are learning perseverance and resilience

    * when my children continue to grow and develop, they are learning that they are worthy, independant individuals

    * when my children nourish dreams, they are learning about hope

    * when my children have times of happiness, they are learning about joy

    * when my children feel loved each and every day, they are learning about love.

                                       

  • scuttlers
    scuttlers Member Posts: 149
    edited June 2011
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    What is this "went peacefully" stuff? It seems to follow each and every "passing" that is posted, said at every funeral, etc. Etc. Is it said to make those of us still here feel better? Or do those who are dying reach a peaceful stage before they die? (I just can not imagine myself doing it "peacefully"; will I be the first they write - she fought tooth and nail until the very end, and cried as death took her from us????

  • corian68
    corian68 Member Posts: 86
    edited June 2011
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    Scutters



    I get what you're saying. Maybe the wrong phrase to use. I'll say from a by stander's point of view, watching my friend pass it was more like a " Knowing full death" that probably doesn't make sense either?

    Debra fought like hell. 43 with an 8 year old. Chemo & radiation until the end.

    Like I said, when it was time.....her 8 yr old Daughter " knew" and gave her permission to go.

    Then before Debra passed she said " oh it's ok now" I think she " knew".

    I hope when I go, I finally understand and my loved ones around me get to witness it and learn from it.

    I won't be able to pick the way I die but I truly hope there is an awareness of never ending love.

    Any one of us could be struck by a car tomorrow, we just don't know...but if it is disease that takes me...I hope it's like the passings that I have seen. Hope I haven't rambled and made things more irritating!!

    Corian

  • ma111
    ma111 Member Posts: 167
    edited June 2011
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    Lori, Scared that pain and other side affects will be out of control is one of my fears of living. I also don't like the thought of someone needing to care for me. Right now I am not a good mother when I am sick, so as far as raising my child, I something think she would be better off at my sisters.

    edwards75, thanks for the encouraging words.

    Thatlife, I am printing that out and hanging it on my kitchen wall tonight. I like that very much and iy really makes me feel better about not being able to care or help my daughter. Thanks a bunch, that made my day today!!!

    Scutters, I can understand how peacefully about dying can be upsetting. My definition includes; no family fighting with the doctors, acceptance of fate, control of symptoms and no issues about funernal or will. The card I choses for my funeral talks about not crying for me because I am in a better place with no more suffering. I don't think you will be the first they write about fighting tooth and nail about. My definition of peacefullt does not include the lack of fighting, but the undersatnding that one cannot change fate. I don't want to die of this horrable disease, I just know it is lickely to be my cause of death and would like to be prepared. I even hate knowing that it will be my cause of death and the pressure of preparing. Hopefully this helped.

    Right now I am traveling 4.5 hours to be on a vaccine trail in the hope of gaining more functional time than traditional chemo, that's fighting and if they write about one fighting, it will be me. I don't think that anyone here is not fighting, just the realization that this nasty disease will get us. I have found a lot of useful information on this post that may help my daughter after I am gone. I don't want extra taxes taken out of the house or any questions about how I wanted things. I and others also realize there comes a time when medical science cannot help us. They want to, but the diesease is not always curable, therefor chemo in some sitations complicates the inablity to function or prolong life.

    I like reading the stories and having hope that my daughter will do ok after I pass.

  • divinemrsm
    divinemrsm Member Posts: 6,146
    edited June 2011
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    I appreciate the advice from PizzaDad that it'd definitely a good idea to write things now for our loved ones to have when we are gone.  I've kept a journal, sporadically, over a number of years.  But I am going out this week and buying a blank journal and write some of my thoughts dowf for my teenage son who will be off to college soon.  

    I also looked up some journals that have questions to answer and found several on Amazon.  I will probably purchase one of them.  It is going to be hard to pick just one.  They all looks promising. The ones I like are:

     "The Story of a Lifetime: a Keepsake of Personal Memoirs"

    "The Book of Myself: a do-it-yourself Autobiography on 201 questions"

    "To our children's Children: Preserving Family History for Generations to Come" 

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited June 2011
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    Thanks for the suggestions for the books love them and saved them to my wish list.  I told the dr. the other day that I need him to keep me around until next june when my kids graduate high school after that is just gravy, of course he said he intends on me being here longer than that, and I appreciate it.

    I started writing in journals (just spiral notebooks) for a long time, actually just my older kids, 36, 33, and 30...not for the twins who are 17, one for each of them and now I have 6 grandchildren 15, 13, 8, 5, 17 months and 16 months so I think I will write just 1 book for the grandchildren based on the books above and continue to write the individual ones for the kids.

    Am I scared don't think so, I am just worried about my kids, all of them, we have not gotten along for a while (the girls) the boys just blow me off, but unfortunatelly for them I think I still must parent them even if they are in their 30's and if I don't like the way they act or talk or treat people I feel the need to say something. so that is an issue with them, but they will understand when their kids get older and they see them doing things they shouldn't be.

    Unfortunately, I live with the twins (and one of the twins can't deal with being around me so he is staying at my daughters since he got out of school, which is 10 minutes away) and they are not handling it very well and well lets just say not very nice to me and the others don't really know anything and I find myself pushing them away, just don't want them hurt, my son (the oldest) has his head and the sand and I think for all of them because I don't look like anything is wrong with me, they think I am lying about the illness or blowing it out of proportion.  I must say that I miss the twin that is not here and want to spend time with him and make memories for us but it is too hard for him and he is mean to me so it is better that he is there....

  • Suze35
    Suze35 Member Posts: 559
    edited June 2011
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    TheDivineMrsM - I got The Story of a Lifetime. It is very comprehensive, but there are some sections that don't apply to me - i.e. Military Life, and Golden Years (though I hope that one will one day). Still there are some great questions in the book, and extra pages at the end if needed.



    Scuttlers - I hope the words that describe my death are "fought like hell with her last breath". I'm sorry if what I wrote came across poorly about a peaceful death. I think I just truly want to hope that in the end, when we know there is nothing left to be done, an innate, intuitive understanding comes over us that helps ease our fears and apprehension. I can't know if that's true, I just hope it is.