hospicediary

GETTING LEMONS

June 13th, 2011

No one wants to hear the words “It‘s actually a blessing,” or “God took them because He needed them more than we did,” or “They had a wonderful life” or “They were just too good for this world”. Never appropriate words, particularly to a parent of a dead child. Even knowing better, and understanding that platitudes are not helpful for a grieving person, sometimes we find ourselves imperiled to find anything to say to a person who is expressing their grief at the death of a loved one.

Does anyone know the “right” words to say? I doubt it. But when a child, a young person, dies, we all agree it seems untimely, we want to shout UNFAIR. What, you mean they died before they reached adulthood, or before they saw their young children grow up, never even had a chance to hold their young ones that we all feel they SHOULD have had the opportunity to bear? Yes, UNFAIR!

I still have this sense of unfairness when I talk to the mother of my little twelve year old patient, more than three years after her death. What to say, even after time has healed some of the gaping, bleeding hole left behind when her child died? When we sit down to talk, I listen and hear that she has found meaning and purpose. Others have heard her story, learned much from her choices, and been consoled by the fact that life does go on; some children may not get to live a long life here on earth, but they do live forever in their parents hearts and minds. We say, “Life will never be the same”. True. But life will go on.

When I hear the words out of her mouth, “because of Katie”, I understand that she has learned unfathomable lessons through her pain and loss; she recognizes her growth as a human being is because of that loss and the choices associated with it.

I am stunned and humbled, that some people are given a huge pile of lemons in life. Sour and seemingly useless lemons, turned into refreshing and rejuvenating fluid, flowing out of their broken hearts, able to transform the unbearable into the gift of lemonade for themselves and those of us blessed to learn from them.

May we all find ways to take the suffering, and make lemonade.

As Victor Frankl wrote of so beautifully, “Everything can be taken from a man or a woman but one thing; the last of human freedoms- to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
Second time around

April 21st, 2011

Anyone who has been thru the demise of a marriage understands the bereavement process as you build your life again from the ashes of what could have, maybe would have been.

It is a painful journey, fraught with lonely moments and times of abject sadness. Will you find love again? The hope is there…waiting to see what life unfolds. I sat in the living room, a witness to the love shared as a couple talked about knowing someone had to be the one to go first. They had hoped to go together, but instead she was caring for his tired body as his days dwindled on this earth.

Love was palpable in the room.

She assured him that she really would be okay. They had thought they would only have a few years together, a second marriage later in life for both of them. Twenty seven years later- they would be saying goodbye soon, maybe before he reached his 93^rd birthday. They spoke of the blessedness of being friends through those years, and how their job now was to help each other’s children with the loss of the father/step-father/grandfather.

I had a great desire to have their conversation on video, for all those lonely people who found themselves suddenly without a partner, having to pick up the broken pieces of a dream. Life brings surprises, and love can be sweeter, kinder, perhaps even last longer the second time around.

I thought to myself as I listened, Look what was waiting for you.

Hope. Love. Friends.
Dying with dignity?

March 14th, 2011

What a strange phrase, death with dignity. Do we need to say life with dignity? (How many things that we do in life are not dignified, but are still a part of living!) I’m sorry to let people in on the secret, but so much of the end of life is not very dignified, not what I have observed. What is dignified about laying in bed, having someone clean you and turn you, and being unable to answer the insipid remarks some people will make at your bedside?

I worry sometimes about the verbiage people choose, but I do understand the concept. No one wants to be unable to communicate and be at everyone else’s mercy, (and what is done to you no longer in your control). Loss of control, fear of being done to, reverting to our infant state, having pain and suffering unalleviated, outlasting our bodies and burdening our loved ones with the physical care, I believe these things are what prompt most people to seek the death with dignity option.

I have to tell Carol’s story to give you a glimpse of what is feared. Carol was nearly eighty when she received a cancer diagnosis with the news that surgery was not possible, and she decided to move near her adult children to have her last few weeks or months, whatever was left, spent with them. She told me right away that she did not want to be a burden to them, and she had no intention of having them take care of her when she couldn’t take care of herself anymore. I remember sitting on the bed in her room during this conversation, and just asking her to consider that maybe she would not be a burden for them, but a gift, like I felt my mother had been to me and my sisters as she was dying.

Later, Carol sought information on the death with dignity law, with the intent to take a lethal dose of medication when the time came, and feel both that she had some control over the how, and when, and spare her children. At each juncture of decline over the next few weeks, Carol would tell me things like “I don’t ever plan to use that oxygen” or “I’ll be dead before I need a hospital bed”. One day dawned with the realization that a bed was needed, a commode, and soon the inability to get out of bed. Over these days of progressive weakness was a despair to “just get it over with” and hurry up to get the drugs needed to be able to die on her terms. I guess it is a “safety” feature, that a person who wants to acquire the drugs to use with the death with dignity legislation must first have two doctors who will attest to the terminal state of the person (this takes some time to arrange) and over two weeks ensue after the paperwork is filed before the person can actually get the drugs. And the person must be able to take the 90 pills, or liquid, on their own. A number of hurdles for a person who is dying soon.

Carol’s disease process sped up after she decided to pursue obtaining the drugs. I watched the race of time, her great desire to be in control of the moment and not become totally dependent and her treacherous body, slipping quickly into that phase of living that we term actively dying. Too late…. even if the pills were available- she would not be able to swallow them. Too late….the family spending nights and days, feeling the awesome burden of alternating pain medication with repositioning and cleaning the frail body of their mother. Too late….to have the dignified part of the dying in Carol’s control.

The last visit I made, after we had turned over the unconscious Carol and I could see the tell-tale signs of imminent death, I was overwhelmed with the sense that I had failed her, we all had failed her, in not meeting her wish, to have death occur on her terms. But another voice whispered to me, life is never fully on our terms, and never, ever in our control. Just know that we take away something beautiful when we bathe and care for our dying loved ones. Yes, even dignified, or worthy of respect. Even sacred.

GETTING LEMONS

Second time around

Dying with dignity?