Image of girl looking down in grief, courtesy of Jesse Therrien.
Death causes humans to mourn. And illness brings with it a million deaths, a million tiny losses both visible and invisible, long before the final death. You have to quit taking long walks after dinner. The beloved deep-throated laugh has been replaced by a rasp. That long-anticipated trip back to the homeland will never happen.

Of course you are grieving. For the person you love. For yourself. And for your life together.

And with grief comes the whole range of stages, from denial to bargaining. Yes, acceptance is a stage, too, but it takes awhile to get there. Moreover, since the person is still alive, you may also struggle with guilt; is it really appropriate to mourn someone who is alive?


Shouldn’t you be celebrating your time together?

Yes. And yes. But like so many things, that is often easier said than done. So recognize your grief, accept it too, but try not to let it take over your life.

Three things you can do about grief
  • Know that you are not alone. In a University of Indianapolis study of Alzheimer’s caregivers, 80% said their biggest barrier to caregiving was the loss of the person they used to know.
  • Understand that this is real. And it’s normal. So don’t try to shrug it off.
  • Take care of yourself. Grief puts you at risk for depression, which in turn may put you at higher risk for dementia. So get a support network. Take a break.  Breathe.
 
 
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Really, your friends just mean to be helpful—but it’s astonishing just how clueless they can be. Below, a list of 5 things caregivers often hear—and some responses that just might work.

Oh my friend’s dad had that, and it was awful!
What you want to say: “I don't need you to tell me how bad this is.”
What you do say: “Oh, do me a favor, please. Find out what worked best for them to ease the pain.”

I can tell you're stressed...you've put on a little weight.
What you want to say: “I am stressed. What’s your excuse?”
What you do say. “Daddy and I share a bowl of ice cream every afternoon. It’s the highlight of our day.”

How long does he have left?
What you want to say: “Longer than our friendship.”
What you do say: “We are grateful for every moment.”
Wow, you look worn out!
What you want to say: “Since I am carrying the ball for all of us, I’ve had to give up sleeping.”
What you do say: “It’s true. I could really use some help. Could you take Mom to her PT appointment this week?”

Do you worry that you'll get it too?
What you want to say: “Just like social ineptness, Alzheimer's/cancer/Parkinson's  isn't contagious.”
What you do say: “I take the best care of myself that I can, and I spend my time thinking about what I can do to help Mom.”

 
 
It is hard for me to believe that my father died eight years ago. He was my hero. To the world, he was elegance personified, as handsome at 95 as he was at 19, a dashing dresser, and incomparable on the dance floor. To his colleagues he was fearless, clear-thinking and deeply competitive. To his friends and allies he was fiercely loyal—and honest to a fault. While losing was never an option, you always found a path to victory that you could be proud of.

Though I miss him terribly, I believe that he is an inextricable part of me, and thus, in some sense, omnipresent in my life. Today, as we celebrate All Soul's Day, I want to share a poem that beautifully expresses the ways in which those whom we love are always with us. 



Death is Nothing at All

Henry Scott-Holland,  Canon of St Paul's Cathedral


Death is nothing at all
I have only slipped away into the next room
I am I and you are you
Whatever we were to each other
That we are still
Call me by my old familiar name
Speak to me in the easy way you always used
Put no difference into your tone
Wear no forced air of solemnity or sorrow
Laugh as we always laughed
At the little jokes we always enjoyed together
Play, smile, think of me, pray for me

Let my name be ever the household word that it always was
Let it be spoken without effort
Without the ghost of a shadow in it
Life means all that it ever meant
It is the same as it ever was
There is absolute unbroken continuity
What is death but a negligible accident?
Why should I be out of mind
Because I am out of sight?
I am waiting for you for an interval
Somewhere very near
Just around the corner
All is well.
Nothing is past; nothing is lost
One brief moment and all will be as it was before

How we shall laugh at the trouble of parting when we meet again!

 
 
Today’s medical advances can mean a terminal illness progresses over months and years. That can be cause for optimism, for finding options, seizing opportunities, trying new treatments—and even for taking a no-holds-barred approach to life.  

Yet in some families, that elongated decline may lead to a different response, one in which room for hope leaves room for denial.

The person isn’t dead, after all. The prognosis isn’t absolute. “It could be a year” means it could be something besides a year—say ten? So why even think about it at all. Better to believe that all will be well than to wander around with long faces.

Yes, that’s true. But such denial can, in fact, leave the person you love without the support they need at a time when they are most vulnerable.  That lack of support can have practical consequences—after all, the patient and their nuclear family still need concrete help, from meals to errand-running to transportation to the endless medical appointments that take over daily life. But perhaps far more serious, that lack of emotional support can force the patient to draw on reserves of inner-strength that could be essential to fighting the disease.

Ultimately, the ostrich approach robs both parties—the patient and the people who love them—of a chance to deepen their relationship, to find a place of peace and joy together, while it is still possible. And that loss is the real tragedy.

To learn more about the reasons families react differently—and how they can become more resilient—visit: http://tinyurl.com/3yyv9rh