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Balancing wishes w safety and comfort concerns

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mtnlady View Drop Down
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    Posted: Jul 24 2014 at 5:59pm
A longtime, close knit circle of 4 friends is facing a dilemma and needs guidance:  Our dear friend of 25 yrs, a widow who lives alone, is Stage IV tnbc with metastases to liver, lung and brain.  She avoided going to the Dr for 6 months after her initial discovery of a lump and postponed the recommended surgery several times.  She only told her 4 adult children that she was having a biopsy; they learned in the surgical waiting room from the Dr that their mother had Stage iv cancer requiring a mastectomy, and had entered the hospital for that purpose.  Obviously, they were completely stunned and devastated that their mother hid this from them.  Her kids grew up with our kids (we all considered ourselves one big family during their school years) and we agonized over our decision to respect her wishes and not share the severity of the diagnosis with them. She also made excuses to postpone beginning treatment.  We were supportive, despite not always agreeing with her decisions.  For a year or so, she was open with us (but not her children) about her illness and treatment, allowing us to help with errands, household issues and accompanying her to medical appointments.  She put one of us on her HIPA forms at the Dr's insistence.  Several months ago, she became unusually quiet and refusing all offers of help from anyone.  She insisted she was getting great reports, although her stories were inconsistent and her treatment descriptions seemed to be constantly changing. She stopped answering the phone, door, texts and emails.  We knew she was going out because her car was sometimes gone, parked in the garage, driveway or front of the house. Her kids told us she said she was fine.  When it became obvious she wasn't going out, she did talk to us and said she had the flu or bad virus.  Finally, she called one of us (the HIPA friend) saying she was dizzy and vomiting and needed help going to the Dr.  Of course the friend went immediately, but when she arrived was told she was feeling a little better and was going to cancel the appointment.  Our friend insisted she go to the Dr., who immediately had her admitted to the hospital.  The Dr. asked for a meeting with the entire family and HIPPA friend.  Only the HIPA friend and daughter attended, with the daughter saying she did not contact the siblings because they were busy and her Mom didn't want them there anyway because she didn't want them to know.  The Dr. spoke frankly and emphatically, stating that the lesions in the brain were causing her to be so ill, they were altering her personality and ability to reason, she needed to stop driving immediately, missing appointments, needs to do a living will, advanced directive, and medical power of attorney (had been told this many times but was now being told in front of witnesses), discussed her mets to liver, lungs and brain (which apparently had existed for some time but were progressing) and she needed to begin Hospice care immediately.  The Dr. bluntly said the timeline was between the patient and God, and she never gives up hope, but also admitted she has never had a tnbc patient with these mets survive, and she believed it more likely to be a matter of weeks rather than months.  Our friend has missed several radiation and consultation appointments since, and her daughter says it's the flu.  The other siblings still don't know anything other than the cancer is progressing and she hasn't been feeling well - which our friend is now saying (she finally answered an email from one of us) it's her medications that are disagreeing with her, but that she'll be fine once the right dosage/combination is found and we'll all get together then.   The daughter says she doesn't need any help from anyone - us or service organizations - she says she's managing just fine and doesn't want to worry her siblings.   However, she is only available to take her to appointments and stop by after work, which means our friend spends most of her time alone.  And in the same conversation the daughter will mention in passing (3 of us have talked with her) that she's had to take so much time off of work.  We respond, "then let us help you or let us help find an organization that can help" and are always rebuked.  So the question is: at what point do her closest friends' concerns about her safety and comfort outweigh her desire to be left alone?  What about the fact that she won't answer the phone, email, texts or door and refuses to see anyone - should we honor that or walk in (we all have keys to each other's houses, have for years) and try to reason with her about getting some help (or letting us gladly do it) so the daughter doesn't have so much burden?  Or take turns walking in and say we're here whether you like it or not and we're just going to sit here in the house in case you need anything, fix some meals, and lend an ear if you want to talk?  Should we pursue the medical decisions and documents with her (her daughter says she just can't discuss it with her)?  As a widow, she was left with young children when her husband suddenly died intestate and we all witnessed the difficulties she had settling his estate, so she certainly understands some of the issues.  Finally, should we tell the other 3 (well adjusted adult) children about her latest diagnosis, prognosis, and the doctor's instructions and the fact that she isn't following them if she and her daughter won't?  Where is the privacy line drawn with respect to her wishes?  We don't want to violate confidences, but we also don't want her to miss meals, fall and injure herself, be in pain or experiencing symptoms and unable to communicate.  We don't want her family (who all live nearby but haven't been visiting because they've been told she's got a virus, and are likely avoiding the obvious) to resent not having the chance to spend her last weeks with her or say goodbye.  If they decide not to visit knowing the extent of their mother's illness, that is their decision.  But is it fair if they don't even know that the end is approaching?  What role might the brain mets play in regards to her decisions and our duty as friends to honor her confidences with respect to informing her family?  Surely others have experienced friends or family in this situation, help!
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2014 at 7:22pm
mtnlady,

Wow, that's a tough call.  Do you have any Cancer Support Communities close by?  They may be able to offer some guidance on how to handle this very difficult and tough issue.  http://www.cancersupportcommunity.org/

Just my thoughts (not a medical person) - It seems like your dear friend is in a permanent state of denial and maybe her daughter is just trying to carry our her wishes without realizing how this will affect the other siblings.  I'm worried she's not getting any help or support, when she desperately needs it.  But if she refuses you admittance into her home, there's really nothing you can do.  The brain mets may be affecting her mental status or maybe it's just how she wants to handle this disease.  I have a Stage 4 friend (another type of cancer), who's been in denial about the important end of life decisions.  (She has small children, but refuses to create a will or advance directives despite urging by her friends.)  If your friend or her daughter doesn't want you communicating the dire situation to the other siblings, then I'm not sure what you can do.  It's a sad situation when there might be resentment after the fact that they didn't know how ill their mother was or guilt that they could have done more for her.  This must be very tough for you and your friends.


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 mtnlady Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2014 at 8:27pm
Yes it has been tough on us. We have all been preoccupied with our concern for our friend's welfare and the pain her family (we've known them all their lives) is or will be feeling. But our stress levels are insignificant compared to her pain or theirs. Unfortunately, we don't have a community support center close to us - we all live in a small town about 60 miles from the nearest center. Which is another concern - this IS a small town. People talk - healthcare workers, clerical people, maybe even her daughter confiding in a friend or the son-in-law mentioning it, etc. Despite all the drama, her wishes May wind up ignored.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2014 at 8:57am
I'm sorry there aren't any sources close by.  Here are a couple of links that may help by giving some assistance over the phone.


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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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2014 at 5:35pm
Dear mtnlady,

I am so sorry for your distress about your friend. I could write a page full of things to let you know that I truly can relate to your pain about your friend. But, it is best that I just say, I understand. These horrible battles with people you love need some truly expert advice. Hospice is a good place to begin, but I know you have no control over that either.
I will be in prayer for your sick friend and all her family. Also, you and the friends trying to help. I can hear and feel your pain through the words that you write.

Love and God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2014 at 8:12am

   Hello mtnlady, You are facing a very complicated situation as you so well describe. Expert advice would be very helpful as previously mentioned. What came to mind is a bereavement group.   If you could get in touch with the head of that group he or she may be able to help. Also does this lady attend a church of any kind...if so the pastor there may be able to reason with her or speak to her other children about her condition. If she does not have a church do any of you...if so speaking to your pastor would be a benefit on how to proceed or not.   I would also be so concerned about the future emotional health of these children and family members that she is hiding this from. They will pay for her decision however or under whatever duress she may be making it.

                    Your friend is also living in fear it seems. My gut feel... myself (I am not telling you what to do) would be to make a meal and then call and drop it off or enter with my key and drop it off kindly and then leave immediately.   If it is met with indignation then there is not much a person can do. If the reception is decent then from time to time I would proceed with that.

                    I believe you said the Dr. mentioned the brain mets could be altering her senses and ability to reason.

                    It seems an awful lot for the one daughter to shoulder alone. Is there some other reason that you can think of as to why she does not want her other family members or children to know... a financial situation or perhaps their health at the moment. This could be important too.

                     One thing is for sure this needs a lot of prayer. I will pray that the family will somehow with the Grace of God learn about their mother's illness so that they will all be able to handle this without further damage.

                      Every person deserves their dignity but when reason is compromised the question remains...what to do...so please know that I will also be praying every day for this and God Bless You. You seem like a wonderful group of caring friends...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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