Being the caregiver of someone who is terminally ill is one of the most difficult and painful jobs one will likely ever experience. At the same time, it is one of the most rewarding and privileged gifts one can ever give or receive.
In times of grief, it is difficult to imagine how in the world anything positive can be seen in something so tragic as caring for the terminally ill and dying. As in all areas of life, when we peel away the emotions attached to a situation, everything has a reason and its place in the grand scheme of things.
On a logical level, we must come to understand that nature is not selective. We know this when we happen upon a dead animal while walking through the woods, or when we watch the leaves fall off the trees every fall, or despite our green thumb and special care, our favorite plant dies for no apparent reason.
It is worth saying again – Nature is not selective.
Every living thing must eventually die. We are rarely ever ready. We are, as a society, more ill-equipped to have to watch it happening. I once called my father on an especially painful day during my fifteen-year-old daughter, Leora's cancer battle, and I cried about the agony of knowing day to day she was dying. He asked me a very important question.
"If you had the choice, would you rather lose her tragically and quick, or this way?" The question caught me by surprise, and it made me think.
What it comes down to is that it's all a trade-off. If it is sudden, the agony of watching the person I love die does not weigh on me day and night. I am not plagued by the reality of how powerless I really am.
But would I trade it for quick and tragic? The last words my daughter and I exchanged were "I love you", because we had the time.
The fact is that we ARE powerless over death. We are powerless to take away the mechanical process that is happening. We may make decisions for our loved ones to prolong death, but at what price?
Caregiving is much more than just changing bedding and bathing. A caregiver, for our intents and purposes, wears too many hats to list, as the list is ever-changing. From basic care, to legal matters and sometimes overwhelmingly big medical decisions, nothing is meaningless during this time of intensive caring. The closeness and trust that forms between the dying and the caregiver is a bond that is like no other. As we all can only be born alone, so it is when we die. We so often hear that no one wants to die alone. Though the dying frequently do wait until no one is by their side when they do finally let go, they only do so because they feel safe enough to go.
Caregivers show the ultimate love. Not because we withstand bodily fluids and changing body functions. Not because we somehow find superhuman strength to lift the body that can no longer lift itself. Not because we learn to perform medical procedures that the general population may have never even heard of, and not because we learn to sleep lightly when we sleep at all in case we must suddenly spring into action. Ask any caregiver and they will tell you "you do what you've got to do".
The ultimate love that is shown by a caregiver is the decision we make to walk the dying to Death's door, holding their hand until they walk through it. The decision to choose love over self, to show mercy, to chose quality over quantity of life, to chose to let go rather than opting for heroics, to send the nonverbal message that "I am here and you are not alone"…these things are the ultimate love. It is the absence of self.
I always said, "The greatest thing I will have ever done in my lifetime was to let my daughter die". I am sure it was the most selfless as well. I even found myself taking it back from time to time after she was gone, wishing she was here so I could have her a little longer. But I always remember the agony she was in, and the physical shell of who she once was could no longer bear the fight. Cancer is a merciless disease. It was a selfish want.
As a caregiver, we receive the ultimate gift, and we give the ultimate gift. We share with the dying a bond and an intimacy that no two other people can share. We can live knowing that we lessened someone's pain on the inside, where it counts, and that we made sure that though they would now walk alone, they did not have to feel alone.
The common issue for the caregiver after the dying has left is "What do I do now?" This is when the caregiver needs a caregiver. It takes time to find where we belong in the world. If our world was already wrapped around the dying person before they became ill, then our grief has that layer as well.
Grief support for the caregiver is very important, and should begin before the death. Anticipatory grief (in anticipation of the death) is not always easy to recognize or explain. We frequently don't have the time to even deal with it, however it is so important to try to find someone to talk to who is on the same page, so as to remove the need to filter our words and feelings.
Going back to the question my father asked me, I thought about my daughter's own wise words to me. One night, she came outside on the front step with me, and she told me that she had been thinking about how everything happens for a reason. She thought maybe her cancer was God's way of saving me from losing her in a car accident or some other teen tragedy. I realize now that although I was her caregiver, she was also mine, and I treasure those months together before she left.
I believe that the dying are given knowledge that we do not have. They somehow know when it is time to go, and they know what we can and cannot handle. That is the gift that we caregivers receive. We are the closest thing to the dying without actually dying. We can get a preview of peace and understanding that we would otherwise never see. We also get the ultimate love.
Jeri Lynn Platt has long been an advocate for natural birthing, unnecessary cesarean prevention, and the medical rights of the pregnant parent. Grief support was only a part of the support and advocacy she offered until the illness and subsequent death of her 15 year old daughter in April of 03. She is available for speaking, workshops, one-on-one support and offers a series of grief retreats at some of the most beautiful spa resorts in South Florida. Please visit www.myshininglight.com
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