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I'm writing to ask for support about inter-family communications. My older sister Bea is dying of multiple myeloma. (I have 3 sisters -- Essy and Cee are my younger sisters) Since her diagnosis in Feb., Bea was very positive; my family has always said about her that she lives in a fantasy world -- so much so that as radiation and chemo progressed, she went into denial about her physical abilities and the state of the disease. Her cancer doctor (Dr. G) didn't help at all, never telling her the truth about the cancer’s progression, the seriousness of it or the results of the latest MRI in mid-July which showed extreme advancing of the myeloma. During this time, either b/c of the cancer or the heavy drugs when she was in the hospital, she had a lot of difficulty remembering what was happening, who her doctors were, their names, what procedures they were doing and why. She eschewed all responsibility and her attitude was “I don’t want to know,” and” just let the doctor decide what to do, it's out of my hands, I don't care." I stood beside her neurosurgeon who told her the details of the mid-July MRI they did under sedation b/c she was in so much pain she couldn’t hold still. She doesn’t remember to this day what he said, except now she is able to remember “my spine is crumbling,” but she doesn’t remember who told her that. During this time, we stepped in to help care for her, since she was not able. Our role was to advocate for her and to keep her safe, and clean and well-cared for.
Her doctor (Dr. G) wanted to begin chemo again in July without being clear with her that it was palliative. During earlier chemo sessions this year she’d had 5-6 ER and hospital admissions due to the treatments, which was very difficult on Cee, the chief caregiver. Bea was in complete denial that the chemo caused her any issues at all. And we 3 sisters had wanted some clarity about it, and finally so did Bea, so I wrote to Dr. G. on Bea’s behalf, asking him that he talk with her frankly about the details of her care, her health, and the current status of the disease.His response was to transfer her to a new doctor – this all happened Monday this past week while I was there; and until the middle of the week, I thought all of us sisters were on the same page, not aware that Bea was beginning to want to face this disease and take over her own care.On Tuesday, my sister Essy visited Bea and said that Bea was ready to face this with the new doctor alone and was ready to ask her own questions. (Cee and her husband had left town for a well deserved rest, and we promised not to bother them.) So when my sister Essy told me to stay out of Bea’s business and let her handle this, I was taken aback. Essy became angry at me for questioning whether Bea was ready to dictate her own care. I wasn’t clear that: • Bea was even talking about being ready to talk frankly about her condition and its effect on her body with the new doctor and • That we 3 sisters were shifting out of the caregiver role we’d been given, since Bea had eschewed all responsibility for it. Apparently now Essy said, she was ready to step up – but Essy did not discuss this with me.It wasn’t clear to me that Bea’s attitude towards accepting her own care had changed, or that we sisters were backing away from the responsibility we’d assumed during her absence of caring for herself.My sister Essy said Bea’d written out questions for the new dr., and I was concerned that Bea was just trying to divert and control the situation as she had in the past and possibly not ask the questions. Essy became furious with me and began attacking me personally, she was disrespectful to me, she threatened, bullied, and said cruel things to me. I asked her to stop talking this way to me, and then she went in her room, slammed the door and locked it. When I knocked and asked her to please talk with me about this new role for us as caregivers, she said, “I’m recording you and I will keep this and present it against you.” She later wrote me in an email that I was “harassing” Bea. Since both Essy and I had stayed over an extra day to go to the new dr. appt with Bea I asked “why are we going to the appointment to be present for her?” I thought we were going to be there for Cee, to make sure that Bea wasn’t going to try and get chemo again.
Our roles as caregivers apparently changed without me knowing it. If there was a conversation about Bea taking charge and us backing away, I wasn’t included in it. If there was, I wanted to be included in on it, not just told as an after thought and accused of doing something wrong when I didn’t know that the landscape had changed. I was only trying to support Bea. And as far as I knew she was still in denial about the chemo and the disease.So where do I go from here? What are the next steps to begin communicating better with this overemotional sister (Essy) so that I can be treated with kindness, respect and as a caring member of my sister Bea’s team – not an outsider

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I'm so sorry for all the confusion you are experiencing, but I am not clear about what help you are needing... if you could be more clear we will help in any way we can....... It sounds as if the communication broke down somewhere along the line... please come back and let us know how we can help... sending you hugs for all you are going thru....
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Although just about anything is possible when people come under severe stress, such as in this case, but it's hard to imagine Essy flipping to the dark side all of a sudden in such and aggressive manner with no prior warning that some of this was part of her personality?? What do you think is really going on? What do you think really triggered this behavior? That's the bottom line, what you must ask yourself to get to the underlying reason for the sudden communication breakdown and you must be very honest with yourself in your evaluation and consider all possibilities. As I read your statement, I find it confusing that a reasonable and level headed person who's been vested along with her sisters in the caretaking could suddenly snap like this and take such a negative position. When you reflect upon it, you may have an answer or the answer is maybe something as simple as Essy reached HER breaking point and it's just taking it out on you. She may need to see a doctor about herself pronto.
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Thank you so much for your answers. I'm sad to say that I feel like at the heart of this matter is a long-time disrespect of me. The first day I arrived, traveling a long distance to see my sick sister, my other two sisters said to me, "Don't make this about you." I wish I'd been brave enough to ask them what they meant then, all I did was try to meet their approval by taking on tasks they wanted done, ie, cleaning out her house, selling some of her items, when all I wanted to do was be with her.
My husband has suggested I write the following to them, how does this sound to you all?

"Put yourself in my shoes just for a moment. If you'd traveled many miles to get to your dying sister, and the first thing you heard from your other two sisters is, "Don't make this about yourself," can you imagine how awful that might feel? This was an incredibly hurtful thing to hear. Can you please explain what prompted you to say this? Because since you said this, and Essy repeated that "You promised things last time but you forget them easily," I haven't been able to get it out of my head, and I need to get this out of my head."

Thank you to everyone here, I am reading many of the posts, and feel as if we are all in this very challenging time together -- and I send you all my best thoughts and prayers.
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I know how you feel, my two sisters were unbelievable when my dad was dyeing...the things that were said, things that were done.... well, thank God I had already done a lot of work on the relationships from my end.... but it doesn't keep it from hurting... I made a choice when that was over, to not put myself in that position again.... just because they didn't respect me, didn't mean it was ok for them to show disrespect to themselves... and that's how I looked at it... I gutted it thru, and now I am at peace with my choices.....

If they are going to leave you out of the loop, do what you need to do to not have any regrets... visit your sick sis as often as you can... tell her everything you need to say.... because in the end, whether it be the end of life or the end of the day, I have be ok with me.... I don't need anyone's approval, their consent, or their attitudes.... but I will be the better woman and follow my own integrity, and then move forward.... I hope you find a place within yourself that does what needs to be done... for you to be ok with it.... sending you hugs...
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Forgive me if I sound insensitive, but right now I'm wondering what I'd do in her place. ... She's aware what the end result is going to be despite the apparent "denial" -- which is actually the will to live manifesting itself despite the nasty effects of all those medications, her condition worsening, and the people who unknowingly probably expect her to accept her fate. She's fighting, but for her the doctors know best.
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Hi Eddie, Yes, my sister who is dying, Bea, is doing the best she can with coming to grips with the disease, she's moved from hospital, back to AL, and is gaining more strength right now. Today she's going to see a new cancer dr. with a long list of questions b/c the old dr. wouldn't answer her questions -- this is very brave on her part -- and she will take in as much of it as she can. I pray she will take in "just what she needs, and leave the rest." You are right, she is a smart person, and I'm sure underneath her "denial" she is facing her own disappearance in the best way she can. Thank you for your kindness in thinking of her and of my family -- this is a very challenging time for all of us. And ladee, your words give me so much strength and awareness -- last night on a long walk, I realized that this is the most gut-wrenching pain I've ever been in and that it is pointing me right back to my own two shoes. I have to stand up in them, and not look to anyone else in my life for their love or acceptance or to ask who and what I really am. Even as my beloved older sister Bea is dying, I am now facing my own life for the first time ever – no longer trying to mold myself to what I think someone else wants or believes so I can feel loved -- but stand in my own two shoes, look to Life/Spirit/Consciousness/God, and ask "Now what? Show me the way..."
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I had some of the same issues when my sister became ill. Five years ago, my sister was diagnosed with stage 4 colo-rectal cancer in September. She did chemo and radiation which did her no good. She and I shared a house, so we were very close. We had a cancer doctor and nurse who would not be open with us. I wish he had told us honestly that her time was short and had talked with us about palliative care. Even in her last 3 weeks, he wasn't honest that she did not have much time left We had always been taught "the doctor knows best" so we never questioned what he said. The social worker and psych doctor also would hide the true situation from us. If only people had said, "The only thing we can help you with is to make your comfortable and give you a few more months to enjoy whatever makes you happy. My response to your situation is to see if you can find someone, anyone, in the doctor's office, hospice if they are involved, a cancer care coordinator, anyone at all, who will sit down with all of you and tell you the truth. If hospice is not in involved, I'd get a referral as soon as possible because they were the only ones who told me the end is near. We should have had them involved much sooner. My sister quit working one day, a few days later she couldn't walk, and one day later she was unresponsive. She was transferred to a hospice facility and remained unresponsive until she passed away, just six months after her diagnosis I grieve for her every day, but I also grieve for the lost opportunity for her to be able to be conscious enough to say good-bye in her last days to my parents and siblings. I feel like I failed her in many ways. Hugs and peace to you as you go through this difficult time.
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