In My 20's.... And Discussing My Death from Metastatic Breast Cancer with My Family

Natalia - All I can say is WOW - what a blessing and inspiration you are to all of us.  God bless you.

 

Lolo

your family is amazing.  your mother has insight and breathe into a very difficult situation.  you are her child, and as her child she chooses to celebrate every moment with you rather than being embedded in the false creation of what your life should be.  the truth of the matter is "the moment is now", your life with them is now, and no amount of honest or truth or discussion of the future is going to change their love of you or how they should perceive one's reality.  blessed are you, my dear.  please tell your mother what a fantastic person she is - and what a lesson she taught us all.

I once had a very good set of video tapes about how to discuss death with dying members. In those tapes, it said that many people who are dying feel that those they talk to don't understand or are in denial when they try to discuss death. They said that that made them feel as though their family members simply couldn't connect. It made them feel really ALONE.

 

The tapes advised that if dying people wish to talk about death, it's because they have a need to, and one thing people shouldn't do at such a time is deny them of one of their very last needs. It's likely their only way of coming to grips with it and adjusting to it.

 

I had to agree with those tapes 100%. If I wanted to talk about death on my deathbed, I would hope people would understand and not discourage me. Nor would I discourage a dying person from doing so. On the contrary, I would encourage them to talk about it as much as they wished so they could get through all the phases they needed to, in order to be able to accept their deaths peacefully.

Oh my gosh!  That's so terribly sad I'm literally swept with emotion.  About 15 years ago I ordered a set of tapes about this topic. The tape discussed how dying people overall so desperately wanted to talk about death, yet their families refused to allow them to do so, making them feel so alone and out in the cold.    It's exactly like your story.

 

Unfortuately a few years later those tapes were stolen but they were so good!

Basically they said that there were a few reasons most families refused to talk about this subject: 

(1) because they had intense fear of upsetting or scaring the patient and wanted the patient to enjoy his or her last days as much as possible, remembering only good things;

(2) because they themselves couldn't cope with the thought.  It was so depressing they were afraid they would break down in front of the patient, leaving themselves and the patient depressed for the remainder of his or her life.

(3) Last but not least, many feared they "might NOT" cry or show emotion and then the patient would think they didn't care.  In fact, this last fear may be the biggest family fear of all.

 

Death and/or seeing someone dying triggers up so many emotions in people (including fear of their own vulnerability) that often they react in totally surprising (or shocking) ways which may make them appear cold.

That happened to me once when I witnessed a death. There was no emotion at all at the funeral.  I felt totally numb and uninvolved.   I didn't even want to look at the body.   An entire YEAR later,  it just hit me out of the blue and I broke down quite severely for several weeks.  It really is great that the body has such protective defense mechanisms that it often lets people cope with things only after they have had plenty of time to accept the situation very slowly through the subconsciousness. 

 

Once someone said to me that she was afraid to attend her mother's funeral for fear that she might laugh.  That made sense.   How many times have you gone to a funeral and people laughed?  This happens numerous times because people often bury their emotions so deeply that they go in the opposite direction and laughter comes out instead of tears.  It doesn't mean that they didn't care. More likely it means that their emotions have backfired.

 

This tape also dicusses how dying members DO INDEED Feel VERY LEFT OUT and VERY ALONE when families refuse to discuss their deaths (which are really their ONLY today). 

 

So if anyone has a dying family member, PLEASE DO THE PATIENT ONE LAST FAVOUR.  PLEASE DO allow that patient to talk about death as much as she/or he pleases, even if it drives you crazy becasue that's all the patient ever talks about.   DEATH is the ONLY THING in the patient's life at this moment  and the strongest thing the patient needs to communicate about now.  If you love that patient, the patient's concerns are more important than yours right now. 

 

It's kind and unselfish to allow the patient to talk about it, distasteful as it may seem.  It's the ONLY way many patients have of being able to cope with, at first, denying death, secondly, being allowed to express anger over it, and then finally reaching the third stange where they are ready to accept it in peace.

You may think you're working in the patients' best interest when you discuss only the  beautiful day outside, the beautiful flowers, the exciting trends of tomorrow, and the family's successes.  However, more often than not, you're just making the patient realize he is about to leave these things behind on this earth.   Seriously, most patients are not interested in the great meals you made that they will never taste, the grand parties you had with people they will never see again, and so on.

 

I wish everyone was able to learn more about death.  I wish children were even taught about it in schools.  There's so much people need to learn about it that could make both those witnessing somebody die, and those dying, much more pleasant., especially about how emotions affect people.

 

PS. Some people of course, may NOT want to talk about their deaths, but if patients express the wish to do so, honour that wish.

We have 4 children and she has been battling breast ca for 2.5 years.  My wife is the ultimate fighter and that is wonderful but she believes she is going to live for another 10 years with this chronic disease.  She has multiple mets and has progressed rapidly despite herceptin and many other treatements.  I am at a loss.  I don't want to crush her hope but... I don't know... she has not addressed any of the issues that she needs to address and it leaves our children and I in a very precarious position.  What to do?