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Reply by Plum1
15 Jan 2012, 9:58 PM

Dear Charneypam,

I am wondering how you are doing. Have you been able to contact a doctor and have you received any helpful information? It is so good to know that you are not alone, and that there is help out there for you. That, in turn will help you to relate to your relative.

Just know that I keep you in my thoughts and prayers. Do contact us again as you carry on this difficult support of your loved one. All your feelings are very understandable, and it can help to just share them with someone else.

Plum 1

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Reply by Charneypam
15 Jan 2012, 11:34 PM

Thank you so much Plum1 and Cath1 - I really appreciate both of your messages.  I have been laying low this week - things seem to be going okay.  Just wondered if there is someone that I could message privately as I am afraid to put too much information on a message board.  Thanks

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16 Jan 2012, 12:42 AM

Hi Charneypam,

There are 2 great services available to privately share information and get support. 

  • Ask a Professional: ask a question and one of Virtual Hospice's palliative care experts will respond within in three working days. All questions and answers are confidential. Our Ask a Professional team includes doctors, clinical nurse specialists, a social worker and a spiritual care advisor who specialize in the care of individuals and families living with terminal illness or loss.
  • CancerConnection Telephone Support:  1 888 939-3333 The Canadian Cancer Society can connect you with a trained volunteer who has had a similar cancer experience. You will receive support and practical information over the phone from someone who has cared for someone with cancer. The match will be based on factors that are important to you such as type of cancer, gender, relationship to the person diagnosed, age of family situation.

You may find it useful to use both of these services as your needs dictate. Please keep us posted. We're here when you need us. Our thoughts are with you and your aunt.

Colleen

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Reply by Charneypam
16 Jan 2012, 12:43 AM

Cath - thanks so much for your message.  Your story and experience with your mom is heartbreaking - it is so hard to see family  members suffer and you sound like a very loving and strong daughter - one that she would be proud of.  Thanks for sharing your story.

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Reply by Charneypam
16 Jan 2012, 1:07 AM

Colleen - thank you so much for the information on CancerConnection - I was not aware of that service and will definitely look into it.  I will keep you posted.

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Reply by Cath1
16 Jan 2012, 5:22 PM

Hi Charneypam:

Thank you for your reply. It's great to have heard from you and while I see that you are laying low, you are still connected here with us and that it wonderful news! As Plum1 reassuringly states, and I will reiterate: You are definitely not alone!

I hope the suggestions that Colleen made will lead you to discover further supports and resources that will help both you and your aunt, but please feel free to share with us here any time you feel lonely, need information, or simply need to talk.

I know it seems kind of scary to reveal your innermost personal thoughts and feelings on a public board. I have struggled with these feelings as well. Perhaps, if you are uncomfortable about sharing more, you may want to change your "name" to something really anonymous that no one who could possibly know you would realize it is you. I don't know if your VirtualHospice identity already fits that bill, but if it doesn't, that's just a suggestion.

I would be open to receiving private messages from you but I don't know if VirtualHospice encourages or discourages this type of connection. Perhaps, Colleen, you could tell us the policy in this regard.

Wishing you all the very best, Charneypam!:)

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Reply by Charneypam
16 Jan 2012, 5:39 PM

Thank you so much Cath - this whole situation is new to me and there is so much going on with respect to family dynamics that I feel confused and frustrated and want answers but I need to abide by my aunt's wishes.  It's hard to help someone when you don't know the answers and my explanations or input are only speculation.  Charneypam 

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Reply by Cath1
16 Jan 2012, 6:30 PM

Hi Charneypam:

I think it is almost impossible to get the answers we seek when we're in the situation, and in fact for me, I didn't even know what questions I should be asking when my Mom was ill and dying. Luckily, we had the benefit of a palliative doctor at the hospital, but only for the last couple of days of my Mom's life. Prior to her help, we were adrift without any clear guidance from staff at the hospital and little support as my Mom had to spend the first four days in an emergency room, which was ultra busy with many other patients, short staffed, and it was uncomfortable for her and us, her family, since the bed was narrow (a notch up from a stretcher) and the room was cramped and we had little room to move. 

The hardest thing for me to deal with was a lack of information about my Mom's condition. No doctor would tell me if she would live or die and yet every family member who saw her knew by looking at her and observing her that she was fast approaching her final breath. I think the doctors and nurses are too concerned with liability if they make mistakes, and yet from my viewpoint it is that very attitude that creates mistrust between the professionals and patients and families.

I know exactly what you mean about this situation you are now in being new and feeling that you must speculate in the absence of information. It is unfair that you are put in the position that you are somewhat involved and yet tethered at the same time and you may feel that your lack of confidence in the information available could lead you to feel responsible if your aunt's situation worsens, or if she should die before you have had a chance to suss out every possible intervention that could prolong her life or ease the pain of her experience in her final journey from this life to the next.

Family dynamics is another complication in circumstances like your aunt's and yours. Every family has its own set of complexities and often there is disagreement between the terminally ill person and/or between family members about how the situation will be dealt with and who is best capable of helping the person make decisions. Sometimes hidden resentments, painful memories and competitive feelings surface and these just make it all so much harder to deal with everything.

Until you come across the right information that will help you accept your aunt's wishes, or until she is open to listening to other alternatives, I hope you will know in the very deepest place within you that whatever happens, it is not your fault. Sometimes the best we can do for another is to offer help and another perspective, but we have no guarantee that our help will be accepted or our advice well-received.

That you are on this VirtualHospice site and obviously giving a lot of time and thought to your aunt's predicament is so impressive to me! Don't fear that your speculations, as you put it, are so off-base. Trust your instincts and just keep the communication flowing as much as possible between yourself and your aunt and know that by you respecting her decision, even when you disagree, rather than forcing her to accept advice she may not be able to yet accept, is a huge honour to her and it shows deep respect and love for her especially in light of the conflicts it causes you within.

Perhaps your aunt is coping in her own way that seems at odds with how you would choose to cope, and maybe you need to ask for comfort and guidance for yourself as well, because you too are suffering.

Please write more and as often as you need, Charneypam! Don't despair, you can't make a mistake when you are acting out of love. No matter what heppens, you will always know you have and have had your aunt's best interests at heart and that's the best any of us can expect of ourselves. And remember, your feelings are very normal and you are never alone. That's the irony, isn't it? There is someone out there who knows and understands and empathizes with what you are going through and feeling, and at the same time there is someones relating to exactly what your aunt is experiencing and how she's choosing to deal with her situation.

With love, time, patience, information, empathy, experience and acceptance of ourselves and others, we can't go wrong. You are phenomenal!

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16 Jan 2012, 6:52 PM

Hi,

Cath, your words about privacy are wise, which is why you can choose your real name or a nickname. Charneypam, I would be happy to go back through this thread and remove references to your real name. Just let me know.

Unfortunately, our forums do not have a private messaging functionality (yet) and I would advise against sharing private emails on the forums. Charneypam, if you send me an email (colleen [@] virtualhospice.ca) stating your wish to connect with Cath, I can connect you. 

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Reply by Cath1
16 Jan 2012, 7:16 PM

Hey Colleen:

Thanks so much for your speedy response!:) I also think that by keeping the responses here open on the board for all to read, rather than emailing one another privately, we all have an opportunity to reach, and ideally help, more people. One never knows that something we may contribute, no matter how insignificant, and even our more negative or troubling feelings of uncertainty, confusion, and frustration, may profoundly touch someone else in a moment of need. That's the point of VirtualHospice to me - taking the hidden feelings we share and airing them safely in the light of mutual understanding and acceptance. By openly sharing our stories, we are each helping to eliminate the societal taboo surrounding discussions of end of life and its associated losses and sorrows.


I feel honoured to be a small part of the growing trend toward open communication about such a worthy and sensitive subject.

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