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Posts Tagged ‘Death and dying’

“How, then, do we know when a patient is giving up “too early” when we feel that a little fight on his part combined with the help of the medical profession could give him a chance to live longer?  How can we differentiate this from the stage of acceptance, when our wish to prolong his life often contradicts his wish to rest and die in peace?  If we are unable to differentiate these two stages we do more harm than good to our patients.”

~~Elisabeth Kubler-Ross, On Death and Dying

AAAAAAaaaaaaaaahhhhhhhhhh…..

I know for many of us, it would be hard to hear that someone was “choosing” to not do everything in their power to stay alive… like, in some way they were making a choice to leave us. . .

But we forget, when a person has decided not to continue treatment, they have been and continue to grieve the loss of everything in life. . . the sight of crocuses popping out of the snow, the sunset through the tops of trees, the smell of their favorite food being cooked, the warmth of our hand in theirs.

It is a time of walking a strange balance, between accepting what is and being a continued advocate.

But, I think in the accepting of what is and being present to the now the person who is ill can make the decision to live in the now and have time with us than to continue treatment that might actually take them from us earlier.

It is a difficult time for everyone involved and yet, with open communication, it can be a time used to say what needs to be said, to spend the time we maybe didn’t have time for in the past, and to simply be together, focusing on our relationships rather than continuous trips to the doctors, hospital, etc.

I know many people who are especially early in their grief journey might disagree; they might want that person back more than any thing else in the world.  I appreciate that feeling.  I’m sure I’ve been there.  And I heard from patients who have expressed the wish that their family would just “let them go” and relax so that they could make the transition into active dying that they need to do.

Too often I heard stories around the clinical team meeting and from support group members that it was when the nurse came in to talk to family, or when the spouse fell asleep, or when they went to the chapel to pray or ran to get coffee that the person died.  At those moments, the bonds are slightly looser, their is more space in the relationship and the hold to each other is not so strong.

But to me that seems natural.  Totally engaged in a conversation with and just simply being with a friend and knowing it was time to leave, but not wanting to leave the safety, comfort, and love of the interaction.  And something happens… the phone rings, the kids come home, someone goes to make tea or use the washroom, and there is a a slight and temporary relaxing of the connection. . . and the invitation that it is okay to leave.

And some times, it takes great courage in those moments to move beyond the safety and warmth of the connection to venture out into the world and journey.

As we sit with someone who is living their dying and you have difficult moments, remember that they will not only be venturing from the safe comfort and love of your relationship and it has to be more bittersweet than anything in the world.  But it is also in our ability to have a soft and gentle touch that we can allow them to leave us with grace, dignity, and much less struggle and pain.

 

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“I saw with her, and when she held my hand she said, “You have such warm hands.  I hope you are going to be with me when I get colder and colder.”  She smiled knowingly.  She knew and I knew that at this moment she had dropped her denial.  She was able to think about talk about her own death and she asked for just a little comfort of companionship and a final stage without too much hunger.”

~~Elisabeth Kubler-Ross, On Death and Dying

So after I picked the title, I wondered, which “D-word” was I referring to… death or denial.

And I wonder why we have to have things our way?  Well, I know why… I guess I just wonder why we have to make people die the way we want them to. . .

As an end-of-life care professional, I have preached to not use euphemisms and to say the words dying, dead, death, cancer, AIDS, etc. but whose issue is that?  If it is an adult, do we really have the right to rob someone of the ways they are trying to take care of themselves on their journey?

Tonight I am thinking about this the way I am about the article I wrote not too long ago entitled stop all the self-help.    Is there a subtle aggression when we tell people how to do things like their dying or healing and is this an area that we need to have self-compassion and compassion for those we are with?

I think it’s an interesting idea.

When I hear conversations about someone I know with dementia, I often think, who are we to try to pull them back into our reality and tell them their world-view is wrong?

Maybe as helping professionals, loved ones, caregivers, etc we should look at those we are with in the same manner.

What does it do for us to have some not be “in denial” of a situation like their dying?

Don’t we know that on some level, whatever level that is, the person who has an illness and is dying almost always knows before the doctor’s appointment, before the lab results, what is going on..

And of course, there is the whole balance between “denial” and “hope”… and I am sure that will be a post for the future.

But for now, can we practice some acceptance?

Elisabeth’s patient knew that the end was coming at some point. . . isn’t it more important that she trusted Elisabeth enough to want her to share in the end, than to say the words, “yes, i know I am dying?”

 

Note:  I will be away on retreat for the next week.  I wish you all well and I hope you enjoy the articles that I have left in my stead.

May sorrow show us the way to compassion

May I realize grace in the midst of suffering

May I be peaceful and let go of expectations.

May I receive the love and compassion of others.

With love and deep gratitude, Jennifer

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