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going against our basic instincts

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    Posted: Dec 31 2012 at 11:06am
Dear TNBC Family,

Our dear Donna wrote about her journey with her Mother on the Spiritual Forum. She gave me permission to post the following-

Dear Donna,

One of the basic forces in natures with humans and many, many animals is to protect our young and nurture them. My wife and I took great care to make sure our children were safe and fed. I watch my daughter caring for our beloved grandson and see the care she takes, because of his various food allergies, to be vigilant about what he can eat and to also for the last 16 months watch her own diet, because she is breast feeding. She has lost a bunch of weight because her diet was changed so drastically..and she was slim to begin with so it was a problem for some months but she was determined to do what she felt was best for him.

That driving instinct extends to our loved ones when they are terminally ill. It is extremely difficult for us to adjust to the fact that in the final journey the body often shuts down and our loved one has no appetite and also often no desire to drink. This starvation, is part of nature, and is extremely, extremely difficult for families to watch. Our orientation is to continue to nurture. When, some months ago, a woman I was helping was terminally ill her son and daughter,both in their 20's, were very upset with their mother for not eating and there were a couple of very difficult battles. I told them what I have written above..that it was a natural process of death and they both got very angry with me. "If my mother doesn't eat, she will die. Don't you understand that?" I tried to say, as gently as possible, that yes, I understood all too well. After a few more days of agony and a book I gave them written by MD Anderson Cancer Center Palliative Care Handbook they 'got it.' Another book Living with Life Threatening Illness by my friend, Kenneth Doka also helped. It was their first experience with the death of a loved one.

You have written about your experience with your dad and now you are traveling this road again with your Mother and it is still an agonizing journey complicated by your Mother becoming difficult to deal with on many levels. This, too, can happen and again, it is extremely difficult for the caregiver to go through. I have no brilliant words to help you with that. I think I have written to you privately before about my grandfather who suffered for years from Alzheimer's/dementia. This is a guy who never cursed in his life, that I can remember, but at some point in his decline he began saying profanities to my grandmother that shook her to the core. She was a gentle, sweet woman who loved him and was devoted to him for 45 years and yet something in his horrible disease caused the 'filter' we all have to disintegrate with horrible, horrible consequences.

Donna, please be kind and gentle with yourself through your Mom's final journey. You have been, are and shall be a devoted, marvelous daughter and as you wrote at least your Mother's love for you is still apparent. You cannot help her in a meaningful way to prolong her life. Please try to let the process take it's course and respect her wishes not to eat. She might find some crushed ice chips helpful for her to rub on her lips in a washcloth or even some sips of water at times. But, she may just want to be left alone. I think it is for the hospice professionals to advise you on forced hydration. It seems it may not make a major difference in her survival but it may enhance her quality of life in her final days. I think you as a family need to decide on that, with her input valued. Again, no easy decisions here. Just heartache. 

I am so sorry this journey has been so difficult for your Mother and for you.

My thoughts are with you.

with my love,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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beck View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Dec 31 2012 at 2:32pm
I FEEL FOR DONNA , I LOST MY 87 YEAR OLD MOTHER AND BEST FRIEND MISS HER SO MUCH, OUR CASE WAS DIFFERENT MY MOM WAS A YOUNG 87, SHE WENT TO HOSITAL FOR MINOR THING, THEY ORDERED   CT SCAN IT SHUT HER KIDNEYS DOWN , THEY TOLD US LATER IT WAS A REACTION TO CONTRAST DIE, WE LOST HER , I HAVE EIGHT BROTHER I SISTER , I DONT THINK WE WILL GET OVER IT , NOT THAT IT IS ANY EASIER, BUT I THINK THE HEALING FOR US WOULD OF BEEN EASIER HAD SHE OF DIED BECAUSE IT WAS HER TIME , NOT BECAUSE OF A MISTAKE... IM THE ONE HER TOOK HER TO THE HOSITAL, IM THE ONE WHO TOLD HER I WOULDNT LET ANTTHING HAPPEN TO HER, 2 MONTHS LATER I WAS TOLD I HAD TN , MY MOM WAS THERE 5 YEARS AGO WHEN I HAD ER POSITVE , I HAD TO DEAL WITH WITHOUT HER
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 02 2013 at 7:02pm
Beck, so sorry about your mother.  I don't think losing a loved one is ever easy.

My mom has several things going against her:  Advanced Alzheimer's, dementia, heart disease, carotid artery blockage, high blood pressure, cholesterol, TIA's.  It's been almost a week now since she's eaten.  They have to offer her water and liquid diet.  I think she may take a sip of water but so far has declined food.  She has also declined all of her meds and uses her hand to push people away.  I've talked to the nursing home doctor, nurses, hospice social worker and hospice nurses.  We are all on the same page.   Our primary goal is to make her comfortable, peaceful and pain free as possible.  Yesterday afternoon they started with Ativan and a morphine sulfate drug Roxanol.  Both drugs are sublingual and can easily be administered under the tongue.  Today, she is sleeping soundly.  I visited in the morning and after work.  She won't wake up, but seems to be more restful.  I'm just so glad I brought hospice care in right away instead of waiting.  My mother is much more comfortable under their care.

The hospice nurse gave me a small book called, Gone From My Sight:  The Dying Experience by Barbara Karnes, RN.  I remember reading it when my grandmother was on hospice two years ago.  It's very comforting.

None of this is ever easy.  I guess it shouldn't be.  Being born isn't easy either, so why should I expect death to be?  At least with hospice assisting, it can be as comfortable as possible.  And for that, I'm grateful.  It's what my mother would have wanted me to do.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Jan 02 2013 at 7:29pm
YOU SOUND LIKE A GREAT DAUGHTER, I LOST MY MOM, I YEAR AGO IN SEPT. EV , THERE IS TEN OF US KIDS BUT SHE TOLD ME I WAS THE BEST , I USE TO LAUGH SHE WAS SUCH A FUNNY WOMEN, SHE HAD THIS DRY HUMOR, ONLY I UNDERSTOOD, EVEN AS OLD AS SHE WAS , WE FELT WE NEVER GOT TIME TO GET USE TO IT, ONE MIN SHE WAS SITING UP ON THE BED , TALKING RECIPES, SHE LOVED TO COOK, THEN THE DAMN CT SCAN... 3 DAYS LATER SHE WAS GONE, BUT MY MOM TOLD ME SO MANY TIMES, SHE SAID BECK WHEN IM GONE , DONT YOU DARE FEEL YOU DIDNT DO ENOUGH FOR ME, SHE SAID YOU DID EVERYTHING FOR ME, I WHICH I COULD OF DONE MORE, SHE SAID I WILL BE OK ILL BE WITH YOUR DAD, SHE SAID IF YOU GET UP SET/ SHE SAID YOU WILL GET SICK AGAIN.... SHE WENT THROUGH MY FIRST BREAST CANCER WITH ME, WELL GUESS WHAT I GOT VERY UPSET WHEN SHE DIED , BECAUSE OF WHAT HAPPEN, AND GUESS WHAT MOM WAS SO RIGHT I GOT SICK AGAIN, 2 MONTHS LATER , I GUESS MOMS ARE ALWAYS RIGHT .... YOU ARE DOING THE RIGHT THING DONNA, I WISH WE COULD OF.......BECK
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2013 at 9:59am
Dear Donna and Beck,    Donna, what you are going through and Beck what you have gone through have brought tears to my eyes. My Mother at 92 is still with us and at home with the care of my two sisters and this reminds me despite what is going on with me to try and focus more on her... I admire you both and remember the prayers continue...Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Genie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2013 at 9:26am
This was posted by our sweet Donna last evening on FaceBook:

Last night my mother passed peacefully with us by her side. She had suffered a stroke and was under hospice care.


Donna, just know that our thoughts and prayers are with you. We love you!

Genie

DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2013 at 10:09am
Donna,

I am so very sorry to hear about your mother. I am so glad that you were able to be with her. Know that we are all thinking about you.

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2013 at 10:16am
Thank you all for your kind words.  I can't say enough about the hospice care my mom received at the nursing home.  They kept her comfortable and pain free as possible.  Hospice provided an extra set of "eyes" as part of her care team.  The last day I was able to meet the hospice clergy woman.  She sat with me for over an hour and we had the best talk.  They not only help the patient, but all family members.  Another book hospice gave me was a called "The Eleventh Hour", by Barbara Karnes, RN.  
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2013 at 10:30am
Dear Donna,

You and your family have my heartfelt condolences.

Thank you for sharing the positive Hospice experience you and your Mother had.

warmly,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2013 at 10:54am
Donna, you've been on such a long long journey and along the way you have always managed to take time out to care for others, me included. You're right that these are difficult journeys when we assist a loved one and a part of me is grateful that most of our lives we are kept in the dark on just how difficult it is to be a part of the last journey.
Hospice is a true gift for all of us. They helped me with my dad and then my sister and their wise strength cannot be overstated. I'm very relieved that you were able to rely on their assistance.
Today must be a time of surreal, where the world does not quite seem to be settled on its axis, but it is and it goes without saying, though I must, that we are all reaching out warm arms of support and love to you.
Mainy 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2013 at 11:19am
Donna,
 
I am very sorry to learn of your mother's passing. I pray for the peace and comfort of you and your family. She was blessed to have you as her daughter and I'm sure your presence was a comfort to her.
 
Martin
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2013 at 12:21pm
Donna,
I am so sorry to hear about your mother.  I am keeping you and your family in my thoughts and prayers.
 
Lori
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2013 at 1:31pm
Donna,
I am so sorry about your Mom, prayers out to your family and everyone that know her.

TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2013 at 1:53pm
Dear Donna,   I am so sorry to hear about your Mother. Please know that I will be thinking about you and praying for you and your family. Please try and get a chance to rest from time to time when you can.

               Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2013 at 8:59pm
Donna,

Deep and heartfelt sympathy to you and your family on your Mother's passing.

What a journey both you and your Mother have been on with her diagnoses over these past years.

May you feel your Mother's love and strength encircling and comforting you now..........and always.

May your Mother rest in Eternal Love and Peace.


With very caring and supportive thoughts with love and hugs,
Grateful for today.......Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2013 at 10:25am
donna know what your going through , it takes time , one day at a time   Beck
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Allison Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2013 at 11:34pm
Donna,

So sorry to hear about your mother's passing. Please let me know if there is anything that I can do for you. I know that the past several months have been difficult for you and your family. I am thinking of you and lifting both you, your mother and your family in my prayers.

Wishing you peace
Allison
9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2013 at 9:58pm
Donna,
So sorry to learn of your mothers passing you are all in my prayers. I am here for you my dear friend.
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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