Posts Tagged ‘dying’

Few people are comfortable talking about death. But those who are dying often long to talk about it. Most don’t because they know it is uncomfortable for their loved ones or because they sense it is a taboo subject.

I have been on both sides of the debate; in a position of being near death and longing for its release, and being with those who are dying, supporting their need to talk about it and be given permission to let go when they were ready.

My father suffered immeasurably as he died slowly and painfully with bone cancer. My brother made all the decisions: if he should take the morphine, if it was better to have him alert but in pain, if they should have a nurse help or if he would do it all himself, believing only he could take care of him, if they should disconnect his defibrillator/pacemaker before the day came his body gave in and it would keep shocking him. My sister and I were 1,300 away, so we had no choice but to defer to him, even when we didn’t agree with his decisions. My father privately called to talk to me about hospice, then after he unloaded his needs, made me promise not to tell my mother and brother that he called. They were insistent that he didn’t need it, because they were not accepting the reality of the situation as easily as my father did.

It was a year filled with anxiety. Traveling to where he lived when it looked like the end was near, then having him rally at seeing his girls and or grandchildren who accompanied us on some of the trips. Then a few months of the same and starting the cycle over again. It was a full year before he succumbed, and we were fortunate to be with him when he finally let go. But even at that moment, my mother was still in denial, trying to will my father into living as he drew his last breaths. And me, now the mother to the child, telling her to stop so his last moment on earth would be peaceful; not filled with worry about her. He had already sacrificed enough, holding on for their sake, in spite of excruciating pain. It was time to let him go.

I know how much he suffered because I was in his shoes. Not for as long, not suffering with cancer, but I was in a place of terrible physical suffering. I was not as stalworth as he was, rather begging to be let free of my life so the pain would stop. But my family would not hear of it. And because I was in and out of consciousness, I was sometimes in charge of my destiny, and other times it was ceded to my husband, who would never make the decision to let me go.

Hindsight is 20-20 of course, and now I am glad we all fought for my life, but the memory of that time is still fresh, even 4+ years later. I see every opportunity as a gift, every day as a bonus. My perspective is different. I am unwilling to put up with nonsense because most of it is unimportant. I am able to ask for what I need (most of the time) and say no when it compromises something else more important to me.

But back to the point of this post. Death comes to us all. sometimes willingly; sometimes not. Sometimes too soon, sometimes when we have lived enough and are ready. But it will come, one way or another. So we should consider that discussing death, our wishes for it if we do have a choice, and planning for the matters that need to be addressed, is actually the more practical and kind thing to do. Especially if it is known that the end of someone’s life is approaching. The gift of listening to the person who wishes to talk about it is comforting to both that person and to those who listen. It is a gift to those who must deal with the formalities of death, to grant the dying person’s wishes.

Let’s take the discussion of death out of the closet. It will reduce the fear it instills. It puts death into the category of one of life’s stages to be experienced, in all its complexities, vulnerabilities and honor.

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Murphy’s Law, if you are unfamiliar with it, says that if something can go wrong, it will. I don’t ascribe to pessimism, so it didn’t occur to me that anything would go wrong. Yet, this time, it did – in spades.

After three hours of probing to find the parts to remove, and much blood loss, my doctors abandoned the robotic surgery and opened my abdomen. (SQUEAMISH WARNING: if you are easily repulsed by medical description, stop here.) Due to multiple abdominal surgeries, there was a lot of scar tissue and many adhesions. An open surgery allowed them a better view of what they were dealing with. Eventually, after 6 hours and a transfusion of 7 units of blood, they accomplished their mission. But not without consequence. The early days were tenuous and my survival uncertain.

During the next 3 weeks, there were multiple additional surgeries (they called them “cleanouts”). I was in an induced coma for most of it, with occasional moments of lucidity when they needed me to answer questions and/or when anesthesia unintentionally wore off. All I can remember of that time are snippets: hallucinations of my surroundings, when later considered, were variations on the same room I was in throughout; never-ending pain that made me want to die; paranoia that others were doing things to me against my will (sort of true when my husband had to act as my healthcare proxy); things I thought I dreamt, when I actually was experiencing them, and things I totally imagined; feeling stupid, angry and frustrated when I couldn’t find the pain pump or nurse call buttons; and did I say unremitting pain?

In considering death, I begged my family to let me go. I had carefully considered the ages of my children. While not entirely grown, they were old enough to survive without me, I thought. It wouldn’t be their preference or mine to leave this world then, but it was a good alternative to the hell I was living. But everyone kept telling me I was strong – that I would survive and that I should keep fighting. All that did was make me angry. They didn’t know, couldn’t know, what I was physically experiencing. I asked for (I think I asked – or did she just know to come?) a trusted Rabbi and friend who listened to me. She reiterated the considerations of entering hospice (no turning back), yet said she would intervene with my family if that was what I wanted. I was heard! My family couldn’t possibly hear me – they were too close to the situation. I breathed my first sigh of relief.

But something interesting happened during that meeting. Because I felt I finally had a voice in what was happening to me, I loosened the grip on my death wish. I got incredible support from the ICU nurses, helping me get out of bed, even if only to slide over to a chair. My family and friends rallied, prayed, sent cards, took care of my husband and son. My LA son came east to visit twice during my 2-month hospital stay, which was shorter than the 4-6 months predicted by the doctors.

To be continued . . . . . . .

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I work in a hospital as a Registered Dietetic Technician. I screen patients for nutritional risk, provide education for  theraputic diets and food/drug interactions. But that isn’t the greatest part of the job. The most rewarding times are those when a deep connection is made with a patient or family member. I’ve tried to analyze how or why it happens when it does, and concluded that it isn’t so simple.

Human connection is obviously found in lifelong friendships. But it is those fleeting, temporary connections that intrigue me.

A patient with Parkinson’s disease struggled to communicate with me. His tremors were so bad, speech was excruciatingly difficult. Time slowed as I stayed with him, watching him painfully, frustratingly, trying to say something. Word by word, I was able to discern that he was very intelligent, educated, lucid. And that he wanted to die.

When I asked if he wanted to speak with a member of the clergy or a counselor, he struggled to say, “I’d like to speak with you.”  There is a fine line professionally, between doing the job I am employed to do, and providing patient care, in the full sense. And I am drawn to those who need to talk about their feelings about their wish to die when they are suffering, and their families can’t hear them.

So I pulled up a chair, took his hand in mine and listened as he shared his wish to end his suffering with a terrible disease that has trapped his agile mind in a crippled body. I returned to visit him a number of times, even though he was not on my daily list of patients. I listened to his younger wife, who seemed still to believe he should be fighting for his life.

I heard his suffering. I could do nothing to ease it, but listen.

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There comes a point when we know a loved one is headed into the final chapter of his or her life. The hospitalizations become more frequent and the recoveries slower. The mind forgets what date it is, what foods one enjoyed eating, what objects are called. Adult diapers become necessary. Walkers, wheelchairs and physical therapy equipment, become our survival tools. Daily activities like dressing, bathing, cooking and laundry are no longer possible without help.

One can question the value or purpose of living like this. Indeed, I have, and know I don’t want to live in such a state. I don’t want to be a prisoner in my own body or mind. I don’t want whatever assets I have left to be obliterated in short order, by the enormous cost of sustaining my life in this manner.

My family knows my position on this. Only we can make these decisions for ourselves and it behooves us to share our wishes with our families and friends. It would be unfair and terribly burdensome to ask them to make these decisions for us.

My husband’s mother has been living for some time now, blissfully unaware of the rest of the world. She isn’t suffering physically, nor mentally. She is fortunate to be able to afford full time care. She smiles when anyone comes to see her and expresses pleasure to have visitors – even though she doesn’t remember who we are from one time to the next. She seems content, even in the face of her declining health. She never complains and is ever sweet. In her innocence, acting like a child, she agrees with our request to leave the IV in her arm this time, but soon forgets and takes it out again. Having forgotten her food preferences, she now eats things she wouldn’t have in days past. She takes our hand and tells us she loves us; something she never did before her dementia.

Her clock is not the one we all March to. She sleeps when she is tired (which is much of the day), and gets out of bed when she is restless (day or night). She is obsessed with the clock and remarks frequently on the time. She still compulsively feels the need to clean up her surroundings, albeit in a more physically limiting way now. Some traits remain while most of them have vanished along with her mind.

She is so different from the person she used to be, so it is bittersweet to be with her. For now, I find comfort in her apparent pleasure during my visits. But when I return home, I am deeply saddened that life has to wind down in such a manner.

While this isn’t what I want for myself and I can express this while of sound mind, I can only hope my family will have the strength to let me go when it is my time. Even if I smile at them and tell them I love them.

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