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PDF versionWhen deer knock on the door in the night
by Melissa Musick Nussbaum on Feb. 28, 2011
On Dec. 27, my mother was diagnosed with pneumonia. We kept her home, Foley catheter and all. A visiting nurse came each day to give her a shot of the antibiotic Rocephin.
On Jan. 4, she was diagnosed with C. difficile, a nasty gastrointestinal infection commonly seen in elderly patients whose guts have been wiped clean of bad, and good, bacteria following a course of antibiotic treatment.
She was treated with Flagyl, yet another antibiotic.
We were able to ease most of the discomfort of the pneumonia with a higher concentration of oxygen and lots of rest. But there was no respite for my mother from the ravages of C. difficile. It stinks, it hurts and it destroys skin. Mother was exhausted but she struggled to get up repeatedly to reach the bathroom. Sometimes she made it; mostly she didn’t. Add humiliation to the mix. We had to keep her clean, but she cried out when we washed and wiped her sore bottom.
My daughter, a nurse, taught me to swab my nostrils with Mentholatum when the smell makes me gag. Now the smell of Mentholatum makes me gag.
She survived the pneumonia and the C. difficile, but she is sadly altered. She sleeps more, and she has lost interest in the world, in politics, in food, even in family affairs. Family matters she does recall are often hopelessly jumbled, as the fixed cast of related characters changes partners, adds new members unknown to any of the rest of us, switches names and locales and histories.
She tells me that deer knock on her door in the middle of the night and my husband walks in to her bedroom in the wee hours of the morning asking questions she cannot answer. On a day when the temperature never made it to zero, my mother says her door flew open to reveal a man dressed only in swim trunks, his feet, chest and head bare. She says he looked at her and seemed “surprised to find somebody in here,” then “he jumped over the wall.”
With all the other losses, Mother has lost that hallmark of Southern womanhood, her sense of context. It’s not that Southern women don’t do the unmentionable; it’s simply that they know the time and place for the unmentionable to be done. Last Sunday, she joined us for Mass and dinner. Our oldest son and oldest daughter and their families were with us. We were in the pew with 14-month-old Leo and 2-year-old Mary Clare climbing about and clamoring for Goldfish crackers. My son turned to me as I wiped Leo’s distressing nose yet again and whispered, “You’re sitting in steerage.”
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Just then my mother began hacking up phlegm. The coughing and the consecration unfolded together, one loudly and wetly, one quietly and drily.
I turned to my son and whispered, “I live in steerage.”
At dinner, my grandson Eamon sat between Mother and me. Eamon is in first grade and therefore acutely aware of loose teeth. But he was distressed when his great-grandmother took out her dental bridge and begins picking out bits of stuck food during the meal.
He poked me and whispered, “Ma-Maw, Atoo’s taking out her teeth.” Then, more quietly, for Eamon is a kind soul, “It’s kind of gross.”
“She doesn’t understand, Eamon,” I whispered back. “Just don’t watch. Look somewhere else.”
And Eamon, who is as literal as he is kind, turned his head and slowly chewed his Brussels sprouts, his eyes fixed on me.
Yesterday, an occupational therapist came to the house. She is going to work with Mother to see if some of the strength and skills lost to illness and age can be regained.
First, she had to ask Mother some questions. I was there with Vicki, the dear woman who helps me with Mother’s care. Mother calls her “my friend, Vicki,” and indeed she is.
Vicki and I were cautioned not to prompt or coach Mother but to allow her to answer the questions on her own. The three of us have perfected a kind of memory dance designed to obscure just how much has been lost. I call it a dance because it is, in its own way, graceful and fluid. “Oh, Mother, you remember Elaine. In Hondo? She fell and broke her hip?” And it appears, as dancers sometimes appear to be flying, that she does remember Elaine in Hondo with the broken hip.
Yesterday, Mother, unaided, could not say her address or the names of her city or state. She did not remember the month or the year. She did remember her birth date. She could not give the name of the current president, though, shaped as she was by racial attitudes in early 20th-century Texas, she could recall that he is “black.”
So, here we are, hanging on to the ethical and religious directives for the end of life as the shipwrecked hang onto a lifeboat, and still we are wondering. When we first began this journey seven years ago, my husband was careful to sit and talk with my mother. They discussed what procedures she did and did not want done in her last weeks and months. No to ventilators. No to radiation or chemotherapy cancer treatment. No to resuscitation. She did not, she told him, want to end up on a respirator in the ICU like my uncle, unable to speak, unable to say goodbye.
As it turns out, that’s the easy part. Here’s the hard part:
A person has a moral obligation to use ordinary or proportionate means of preserving his or her life. Proportionate means are those that in the patient’s judgment offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or the community.
How about antibiotics for the treatment of pneumonia? Is that an extraordinary measure or proportionate means? What if past history suggests that with antibiotics she will survive the pneumonia? What if past history also suggests that, with antibiotics, she will suffer debilitating side effects and life-threatening imbalances in certain chemicals and in the levels of blood thinner in her system? What if the antibiotics kill the pneumonia-causing bacteria, but stress her kidneys to the point of failure? What if, after two rounds of antibiotics, her blood is so thin that the new concern is uncontrollable bleeding, in her brain, in her stomach, from a bump or a knick or a garden-variety nosebleed?
Now add in this: The elderly patient wants to live. Indeed, as the dementia robs her of sense and memory and -- a key word in the ethical and religious directives -- judgment, she clutches ever more at unadorned, and, perhaps unknowing, life. Just breathing, she will settle for that.
Does the strain on the caregiver matter? Especially if the caregiver, as is most often the case, a woman? I think of the paucity of married women saints, and then I think how many of them are valued precisely because of the excessive burdens they carried, almost always in the service of family.
Are you disappointed that I think of myself? That I am so offended by bad smells and unpleasant sights when a human life is at stake? Me, too. I thought better of myself, and, frankly, I thought better of death and dying.
I thought it would be more like Beth’s death in Little Women. I memorized that chapter, “The Valley of the Shadow,” when I was 9 years old. And what delight to weep, again and again, at Beth’s gentle and -- there is no other word for it -- pretty death.
Here, cherished like a household saint in its shrine, sat Beth, tranquil and busy as ever; for nothing could change the sweet, unselfish nature, and even while preparing to leave life, she tried to make it happier for those who should remain behind.
There was no mention of bloody diarrhea or lacerated bedsores or lacerating anger.
So add this as well: a caregiver whose motives are neither clear nor trustworthy. She is weary and she is sad, but on whose behalf? Does she truly want to see her mother’s suffering end, or her own? How does she judge ordinary or proportionate means when every single treatment proves the high school physics theorem that for every action there is an opposite and equal reaction?
I swore after this last bout of illness that I would not subject Mother to Rocephin injections or Flagyl again. Subject Mother, or me?
As it turns out, I am grateful to be part of a church that won’t keep its nose out of my business, because my business is not as clean as I would have you believe. Long experience has taught the church how quickly resolution and good intentions wane. So, curiously, I find myself wanting more, rather than less, from the bishops.
“The task of medicine is to care even when it cannot cure.” Yes. But where is the line, the land of “even when”? If we can cure the pneumonia, should we? Must we? Given the cascading effects of the treatment itself, does curing constitute a sin against caring?
I try to keep my moral obligation. But I no longer understand what “ordinary” or “proportional” mean in these disproportional, extraordinary days.
[Melissa Nussbaum is an NCR columnist who lives in Colorado Springs, Colo.]
I find this article personal
I find this article personal and profound. Well done and provocative as well.
An excellent article. Thank
An excellent article. Thank you
Excellent, pure, and honest.
Excellent, pure, and honest. Your writing amazes me. Thanks for inspiration and gut-level honesty.
I dealt with an HMO, SSI, COP
I dealt with an HMO, SSI, COP funding, a doctor, 2-3 nurses, a home health care agency for 13 years...my son was tragically brain injured in an accident that didn't need to happen & shouldn't have happened. It was exhausting...the other children went on with their lives in school & sport; my husband went on with his work, his ministry, his coaching.
My life was changed completely...my son had to be my focus. I never got to sleep past 6:30am, as that's when the night nurses left. I could only leave the house if a responsible relative or medical personnel were present.
It was stultifying. It was hard. It was life changing. It was simply awful, never awe-full.
If you've never been through it, you can only nod your head and pretend you know what a caregiver goes through.
How much suffering is enough...for the patient? for the caregiver?
As the kids exclaim today -
As the kids exclaim today - "OMG". You have perfectly described what I have experienced in family and professionally. Seven years is a long time - Gof love you. My husband has dementia. I pray for all family caregivers, that God's love continues in their hearts and their attitudes. Thanks for sharing.
Blessed are the caregivers.
Blessed are the caregivers.
Such a poignant, meaningful
Such a poignant, meaningful essay on a subject that will touch all of us! Especially for anyone who has already taken a turn in steerage.
Melissa, when I knew you back
Melissa, when I knew you back in the 70's in Amarillo before we moved to Lubbock, and eventually back to Hereford, the "home of our childhoods", I liked you very much, listened w/marvel to things you said and watched the way you lived, and knew you were special...I love your writing and sharing of faith - the facts, fun, and failures we (women, mothers, wives, people) live through. I pray for you as you do what you must do and wonder about it, as I do daily, weakly :) Sorry about the rambling....it is late....a long day (my parents are 91 and 82) and we leave for Dallas tomorrow...a visit....GOD BLESS YOU! KEEP WRITING! KEEP FEEDING US GOD'S WORD THROUGH STORY AND EXPERIENCE!!! Your Sister in Christ, Janie Banner (married to Mark now 40 yrs)
I have never walked the path
I have never walked the path you are on, but you are probably bearing the burden with more grace than I would. I struggle with the balance between care of the "terminally sick" and the strains placed on the caregiver(s). At what point does the balance between allowing life to run its natural course and preserving the well-being of the caregiver(s) tip? Often we are so focused on the patient that we don't consider the caregiver(s). Is it wrong to consider your needs? If you are not well physically, emotionally, and spirtually, how can you possibly help another? You are not a machine that just keeps going. You need time to take care of you. And that's hard to do when you are caring for someone who you love without question. God bless you and thank you for bringing tears to my eyes.
This article describes so
This article describes so well the challenges faced by those caring for a loved one, those gray areas where one struggles to make the right decisions. I cared for my husband at home after a hip fracture for over three years and during his last five weeks, when he was slowly dying. The question so often is, are we prolonging life or prolonging death by what we do or not do. There are no easy answers.
Thank you for the poetic and
Thank you for the poetic and gut-wrenching wisdom of your story. I have endured a similar journey and asked the same questions. When my mother died just over a year ago, I had no regrets about the time "in steerage" and pray that you may have the same experience. Our faith is all that keeps us from going crazy when we have to watch one we love suffer. It is complex and disturbing and holy. May God give you the strength and grace to see beyond the present pain. Take care of yourself. You and your mother will be in my prayers.
As I walk a similar path, I
As I walk a similar path, I cannot tell you how much I value your clarity and honesty. God bless your caregiving efforts and your struggles. I continue to remind myself of Mother Teresa's words, "I know God doesn't give me more than I can handle, I just wish he didn't trust me so much!"
Thank you.
This is EXCELLENT,
This is EXCELLENT, EXCELLENT!! This is the REAL STUFF of REAL LIFE!!! These are the types of REAL STORIES that MUST BE TOLD, that MUST BE SHARED, that MUST BE DISCUSSED and REFLECTED UPON in Moral Theology classes, Pastoral Theology Classes, Ethics Classes, Care-Giving Classes, etc! EXCELLENT! ALL SO VERY EXCELLENT! Parts of such a story wouldn't hurt to be shared in a homily now and then, too! As the saying goes, so we must say it to 'the Church--' "GET REAL!" Our stories of Faith and Courage, our SPIRITUALITY MUST BE REAL!
Dear Melissa - I was there,
Dear Melissa - I was there, too. My mother died 7 years ago on the Feast of the Annunciation, after three years of pain, humiliation, dementia. It was very hard.
...I dread the thought that I might have this happen to me, but worse, have it happen to my children.....God bless you, for articulating so well what it is like, and for being the light that you are for others.
Melissa, I was utterly amazed
Melissa, I was utterly amazed that you should ask us whether we were disappointed that you should think of yourself. I would be more disappointed if you DIDN'T think of yourself! Unselfishly caring for others is one thing, but the situation you describe goes far beyond that. It really makes no sense to me when people say things like, "Do the carers/family really want to end their loved one's suffering, or their own?" Their suffering is real: why shouldn't they (and any compassionate person) want to see an end to it? I also get confused when Church leaders talk about life being sacred till "natural death". The sort of treatments which you mention Melissa, which prolong the life of an elderly and ailing person, are anything BUT natural! I hope this won't shock anyone, but I see nothing ethically wrong with deciding not to treat pneumonia in an elderly, sick person if the treatment is likely to just cause further suffering. I'm not saying Melissa and her family should've chosen this course: that's up to them; I'm just saying I see it as an ethical option. But I agree, this is certainly something we need a lot more discussion about. I wonder if we also need parishes and other groups to be doing more to provide practical help? In any case, thank you Melissa for this honest, moving, thought-provoking article.
Please, Mrs. Nussbaum -
Please, Mrs. Nussbaum - INVESTIGATE AREA NURSING HOMES!!!
Refusing to consider that alternative is like a Christian Scientist refusing medical care. God indeed suits the back to the burden, but you and your family have done your part!
When my own mother, recently deceased, first fell ill, I was fully prepared to close my own home and move to hers as her caregiver. My brother stopped me in my tracks, and he was right. Mom had often stated her disrespect for people who pleaded with their families to be kept out of nursing home care - she believed that the quality of care provided there, by trained people who got to go home and live their own lives, was better than that an exhausted family could provide. She was right.
My own MD never prescribes antibiotics without insisting on probiotics at the same time. Still, I've never taken those antibiotics, or any other, by injection. Different protocols may exist.
I do not know if your town is
I do not know if your town is large or small, but you may want to talk to your doctor about whether your mother qualifies for hospice, which is available in a lot of places.
One possible question for you: would your mother, if she were lucid and competent, want to go through what she is experiencing?
It is normal to feel conflicted about motivations. Sometimes the answer is both/and.
Can you find more help to give yourself some respite? These days families find it hard to have the time, especially if both spouses work, but there are agencies who might help if you can afford them.
As people get ready to leave us they often have vision-like experiences - we don't know what that means. Sometimes they just plain hallucinate. But it means something to them.
I think the bishops are getting ready to release another directive on medical ethics if that is what you are needing. You could check with the USCCB. Normally they don't publish these directives on line, but you can purchase them.
God Bless you and thank you for sharing your journey.
I thank you for your article.
I thank you for your article. For me, it asks the question of how to resolve issues surrounding the end of life. The author makes the point of moral obligations and addresses the issue of personal judgement. I have just begun to look at this issue for myself. At this point in my thinking I keep returning to the statement of "love thy neighbor as thyself". It is important for me to have an answer for what I would like for myself is such a situation. I need to decide what is appropriate and communicate this as clearly as possible. This would be a great aid to anyone having to deal with these issues in my case. The author's article also raises the question, what would the author want if she were in her mother's position?
I now know what a
I now know what a “kaleidoscope of prayer” looks like !
EVERYTHING – and I do mean everything in one place at the same time – and all held in love . . . just because . . . our heart tells us we must
And those who have experienced true love also know, as you so well said,
this is d _ _ _ tough love too (‘amn” or ‘arn’ or ‘aft’ as you please).
You know your reflection is true and touched many of us to the heart when so many responded ‘amen’ in the way they did.
The ground you have prepared is ‘sacred’ – transliterated = messy, stinky, true, foul/sweet, hopeful/discouraging, and all simultaneously.
Hearts who have held this love thank you deeply – myself included.
It IS the responsibility of moral theologians to prayerfully, lovingly and effectively INTEGRATE our lived reality with Christ’s love and transform it into the teaching of our church which will guide us home. What you have done is taken a real experience – the kind that guidance needs to be directed to – and placed it on their plate. PLEASE GOD, give them the courage and the grace to pick this up. It must be held.
My mother (born in 1920)
My mother (born in 1920) begged me to not take her in when she got old and frail. She grew up an only child with aging/dying grandparents (4) during the depression and WWII and wanted a nursing home choice if she did not die suddenly at home.
I could not understand her reluctance to live with us. When Dad developed dementia she placed him in a nursing home after three years of caring for him at their home. He lived another nine years at the nursing home, the last two with her also at the nursing home in a separate wing. It was what she wanted .. and I felt awful that I was not given the opportunity to care for her. Now at 90+ she needs round the clock care...has had hospice the past three months. I visit often but...
I live 200 miles away and am employed full time in a Catholic school. She made the choice and now I think she knew exactly what she was deciding. Her gift to me was based upon her mother's life of care giving, a difficult, time consuming and emotional roller coaster.
Thank you for your words Melissa ...may they help us all recognize that end of life issues affect all families no matter our age.
Ah, the miracles of Modern
Ah, the miracles of Modern Medicine. We have powerful broad spectrum antibiotics that kill not only the pneumonia germ but also completely wipe out those bacteria which normally inhabit our intestinal tracts to aid in food processing. The unfortunate results are as described by Melissa above. In the "old days" we needed to culture and identify the specific organism causing the pneumonia, then find an antibiotic specific for that particular germ, thus sparing the side effects.
Of course, when I was in medical school (at a Catholic University, no less) we referred to pneumonia as the "friend of the aged and the infirm", helping them to peacefully slip out of this life and into the next. Discussions of benefit versus burden in regard to the terminally ill were held between physicians, patients, and families. Bishops were not involved.
Now heirarchs issue proclamations on medical matters way beyond their competence and understanding. We are told that nutrition and hydration for those terminally ill are not to be considered optional medical "treatments", but that we must use all manner of tubes and machines to provide these "necessities" in the interest of respect for life. This despite the fact that loss of appetite and a decreased desire for food and drink is a natural part of the dying process.
And so I pray, when I am at death's door, God save me from a catholic hospital.
your article prompts me to
your article prompts me to send it to my adult children and partners and then have a family get together to share feelings and reactions. I know we can't anticipate completely how our ideas might change. Yet as a 74 year old woman with a wonderful life and chronic health problems, I know exactly what would be my fervent wish were I in your mother's situation. About the time C-diff set in, I would want a party with wine and then a lethal cocktail and those of my family who would like to share my journey to death be with me in what ever way they desire. It would sure be nice if they took turns holding my hand.
What I definitely would not want was church (hierarchy) teaching informing my decision because that teaching is about rules not compassion or companionship.
Darlene White
Edina, MN
Darlene, I quite agree with
Darlene, I quite agree with you. I have taught theology on the university level; I have also been denounced to a bishop as a heretic. Hang in there!
Peter M. J. Hess
Berkeley, California
Melissa, I, too, am a
Melissa,
I, too, am a caregiver for my 91 year old mother and I have also struggled with many similar issues. I have also worked as a social worker in the field of aging for 30 years so I know that nursing homes are not always the answer, nor is hospice. As a caregiver I struggle with my situation and as a social worker & caregiver I struggle with the question of why in nursing homes the staff with the most "hands on" care is also the staff with the lowest wages and often, longest hours.
For me, I would like to hear the church speak to the issue of justice for those who care for our most vulnerable people at the end of their lives and work for the sainthood of caregivers.
Thanks, Melissa
I know that I am deeply
I know that I am deeply suspicious of medications. I feel that so often physicians prescribe them and the person is somehow like a "mixed drink" with a variety of different potions and all must hope for the best. I did find that a drug called Memantin (also named Namenda) did wonders for my Dad's mental status. He had dementia as a consequence of a series of little strokes. I wondered also if probiotics might be an aid to rebalance the natural biotics that should be in the gut. It is very true that antibiotics wipe them out and then all kinds of digestive problems emerge. My prayers are with you.
Thank you for letting me know
Thank you for letting me know it's just not me. I got my parents in April of last year. Dad died in May after 2 of the worst weeks of my life. Mom is 86 and has fallen twice, broken her collarbone, had a stroke, and now, we too, are fighting pneumonia. I am painfully aware of what you are dealing with but somehow it makes me feel better to know that there are others out there struggling with the same physical and emotional issues. Thank you.
Dear Melissa, Thank you for
Dear Melissa,
Thank you for dealing so honestly with all of the issues involved with caring for you beloved mother. It is a gift to the Christian community--
Peace be with you and your family, Sally
Dear Melissa, My almost 90
Dear Melissa,
My almost 90 year old mother has lived with us for almost 5 years and has had increasing dementia, as well as problems falling. Six months ago her doctor decided to take her off her cholesterol medication after about 25 years, saying that high cholesterol is not going to kill her. Since then she has not fallen (thank God) and has regained her sense of humor. The doctor indicated that anecdotal evidence in her office leads her to believe that dementia-like symptoms have been reversed when the "statins" flush out of their system. It takes about a year. We have noticed a remarkable, though sometimes inconsistent, definite improvement. She is on Red Yeast Rice for her cholestrol.
My other find is a book called "Contented Dementia" by Oliver James, a British journalist. It uses the Specialized Early Care for Alzheimers(SPECAL) method for dealing with dementia.
Thank you for your reflections and please continue sharing your hard won wisdom.
peace,
Rosalyn
Dear Melissa, I just finished
Dear Melissa, I just finished reading your story, and I haft to say it touched my heart, and brought tears to my eyes, my mother passed in Dec 07, at 58, after ten years of illness, she had told me time and again, she did not want to be kept alive, to please just let her go, she went into a coma Dec 25th, her body started shouting down very fast, on the 27th we unpluged everything an let her go, its what she wanted, even though I know this, it was the hardest thing I have ever had to agree to, I still after all this time, question my choice in not doing more, but I knew what my mother wanted, I still feel very bad, and sick with my self, I feel like I let my mother down, but my mother is not sick anymore, through my faith I know she is with god, god bless an keep you, lance
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