When we finally come to accept that suffering, impermanence and death are facts of life, we are freed from our unrealistic expectations, our grasping, and our subsequent disappointments and grief. ~ Christine Longaker
A reader writes: My mother died last December at the age of 94. I have been tortured by thoughts that I didn't do enough to prolong her life. My mother and I were extremely close as my father died when I was 7 and I had no siblings. For the past 20 years, she had lived with my husband and me and our two daughters. She was the girls' caregiver while I worked.
My mother was my rock and so devoted to me and my family. I admit I took all that for granted. She moved across country with us 4 years ago when we relocated to a warmer climate. I didn't feel too guilty about uprooting her because all her siblings were gone and our small family was all that she had.
Over the past few years she broke her hip, then her tibia, and her pelvis. Each time, she fought her way through in-patient rehab, which she hated. She was always so strong! Then, in January, she had a stroke. I expected her to fight her way back. She didn't have any paralysis but she had expressive aphasia. The words were clear but often nonsensical or she couldn't retrieve our names. Her glaucoma also worsened after the stroke. Nevertheless, I expected her to regain most of the skills she had lost so I made sure she had lots of speech therapy. I ignored the signs that she was slipping cognitively. I attributed the memory issues and spells of confusion to the aphasia or her failing eyesight. She started losing weight which she could ill afford. Her appetite waned and I would argue with her for not eating. I felt she was giving up and it made me angry because that's not what my mother ever did despite all her other challenges.
For the first time, she began to repeatedly say things like "94 is too old". She withdrew somewhat--seldom speaking at the dinner table and just sitting in her room staring into space, not even watching TV. She was down to 85 lbs. Her geriatric doctor told me her lack of appetite was related to the dementia brought on by the stroke. The term "dementia" almost brought me to my knees. I refused to believe it. As the months went on, my mother had several minor falls due to poor balance even with the use of a walker. She no longer could prepare food for herself, which I blamed on her eyesight. Finally, in September I had to place her in a group home. She went reluctantly. It broke my heart but the caregiver there was wonderful. In October, she had another fall there and fractured her pelvis again. More rehab, then back to the group home.
In early December, she appeared to have caught a cold. The next morning, her caregiver called to say my mother was too sick to even stand up so she called an ambulance. While in the hospital, the doctors diagnosed her with pneumonia and a UTI. She seemed to drift in and out of reality, often just calling out "pleeease" over and over. Two days later, they discovered she had lost the ability to swallow, most likely due to the dementia, which they were now calling Alzheimers and/or a possible additional stroke. This is where my guilt trip began.
The doctor in charge told me that it was "her time" to go. He said she was clearly a case of "failure to thrive" based upon her already skeletal looks and lack of coherence. I'm sure she was down to 75 lbs. He said the only option would be a feeding tube but even with that, aspiration pneumonia is common. He was adamant that the best course would be to place her in hospice and let nature take its course. A rep from hospice also spoke at length with me and urged me not to force my mother to live in such a deplorable physical condition. I was in a total fog. Being the only child, I was faced with this horrible decision. Everyone close to me agreed that I should let her die a peaceful death rather than hook her up to a feeding tube. She was too far gone for me to discuss it with her. She seemed so fearful and confused that I didn't want to upset her by asking such questions. So, reluctantly, I let them place her in hospice where she slowly died in less than a week. The morphine kept her pain-free and my family and I were there with her till the very last breath. She slept around the clock that whole time until she died.
The cause of death was listed as aspiration pneumonia but I'm plagued by the thought that she really died of kidney shutdown because she wasn't given a feeding tube. Therein lies my deepest fear. Did I kill her? Maybe she would have wanted to live longer. My husband gave me lots of examples of things she had said in the past indicating that she'd never want to linger so incapacitated but I'm not sure. I think about the Terry Shiavo case and think this is the same thing. Who was I to make such a decision for her??? In addition to the sometimes overwhelming grief I feel from losing my mother, the guilt over her manner of death consumes me at times.
My response: I'm so sorry that your mother has died, and sorrier still that her dying and death were so traumatic for you, despite all your efforts to take such good care of her. As Christine Longaker writes in Facing Death and Finding Hope:
Usually, neither the dying nor their families fully understand the physical and emotional processes they are going through in facing death. In experiencing the dying process of a loved one, family members may feel as though they themselves are dying. They do not realize that their conflicting emotions, anticipatory grief, feelings of helplessness, anxiety, frustration, and guilt are perfectly normal. They lack the validation and support that they desperately need during this extremely difficult time. 'Dying' is sometimes a harder process for the loved ones than it is for the person facing death . . .I want to offer you some information that I hope will help to answer some of the questions that are troubling you ("Did I kill her?" "Who was I to make such a decision for her???")
One day as I was doing some other work online, I had the good fortune to stumble across a 2009 radio interview entitled End of Life Care in America. In this episode of Fresh Air, NPR’s Terri Gross interviews Dr. Robert Martensen, who describes in a very personal manner the problematic ways the American health care system addresses the needs of dying patients and their families. I encourage you to take 40 minutes to listen: End of Life Care in America: A Doctor's Diagnosis
In addition, below is an excerpt from an informative article by Shirley Scott, RN, MS, CT, a nurse thanatologist and community educator:
The terminal phase of life occurs when all body functions begin to shut down. This may begin to happen a month or so, a few weeks or a few days before the person dies.The blood circulates more slowly. The kidneys put out less urine because their function depends on a good blood supply. Swallowing may become difficult. The person’s appetite disappears because the stomach and intestines are shutting down and cannot carry out their jobs of digestion and absorption. The heart and lungs function poorly due in part to slowed blood circulation and the changing chemical balances in the body. Communication is often restricted because of severe weakness and less blood supply to the brain. The person has multiple medical problems and is dying. At this point it is necessary to keep in mind the possible unintended consequences of attempting to intervene with life support measures.Click here to download and read the entire the article: Life Support Interventions In The Terminal Phase Of Life: Understanding The Unintended Consequences.
I also encourage you to follow the work of Barbara Karnes, RN, an experienced hospice nurse and award-winning author who has devoted her professional life to providing detailed end-of-life education materials for families and professionals working with terminal illness, death, dying and bereavement. Find Barbara's works on her website, BK Books, on her blog at Something to Think About: A Blog On End of Life. and on Facebook at End of Life Care and Bereavement.
I am a firm believer that information is power, my dear, and my hope for you is that these resources will help to put your mind at ease. Clearly you are a devoted daughter, and I think your mother knew how very much she was loved. Painful as it was for you, your deciding to let her go was your final act of love for her.
Afterword: Oh, Marty, I read the entire article you cited and it was just what I needed! Although I'm typing away with tears falling, I'm crying because I finally have a clear understanding of what the doctor and hospice workers were trying to explain to me. Maybe I was too distraught at the time to really hear them. All I had come away with then was that my mother was too weak to continue to live, so I had to pull the proverbial plug and let her die from renal failure due to lack of hydration. I guess what added to my anguish was that a week before she died in hospice, while still in hospital, she had a very coherent and nice conversation with my daughter. The next day they discovered she had lost the ability to swallow and I was immediately confronted by the doctor to decide whether or not to prolong her life via a feeding tube. My head was spinning. Although she had begun to regress again and seemed confused, I kept reverting back to that moment of normalcy as I struggled to make a decision. I wish someone had given me this article then. It all happened so quickly, I didn't have time to process it all. Within days, I watched her body slowly shut down and all I could think was that I was causing this to happen. This article gave me some peace and allowed me to entertain the idea that she really was truly at life's end when all this happened and I just helped find a way to make it as painless as possible for her. I hope I can continue on this more positive note as I move through my grief. Thank you so much!
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