Monday, March 7, 2011

Macys Or Mom

I walked towards Room 22 to see my next patient, an elderly woman who was found lying on the kitchen floor of her private home. She lived alone. Because of her advancing dementia, she was unable to provide any history as to how long she had been down or the circumstances that lead to her being on the floor. Unfortunately, due to the strong smell of stale urine and feces that permeated the hallway outside of her room, it was a safe assumption that she had been down for quite a while.

Not yet fully aware of how disheartening this patient's case would be, I opened the room's partially-closed glass door before sliding back the room's privacy curtain. I stepped into this patient's room as this patient stepped into my consciousness.

What I stepped into was sad. No, heartbreaking. The patient, rolled onto her left side by our staff and lying fully exposed on her treatment cot, was being tenderly wiped and cleaned by two of our ER nurses, one standing behind the patient while the other stood in front. Despite the slightly-dimmed room lights, I could appreciate the momentous task these nurses had of cleaning the hardened stool and human waste from this patient's neglected body.

I looked to unflappable Charlene, the nurse standing in front of the patient, who was shaking her head in frustration. "This is bad," she said, "really bad." She went on to explain that the patient was found by her two children, a son and daughter, on the floor of her kitchen, conscious but covered in human waste. Her own. The prehospital team believed she had been down at least several days. According to Charlene, the paramedics, our local experts on witnessing the best and worst of living conditions, said that this patient's home was among the worst conditions they had ever encountered. "There were multiple mounds of strewn garbage, numerous puddles of drying urine, and smeared feces everywhere you looked," Charlene said, repeating their words.

I shook my head. Although I hadn't yet learned the particulars to this patient's social situation, I had seen my share of elderly patients who were brought to our ER for treatment after they had been discovered incapacitated in their home, whether ill from a trip and fall or, worse, a catastrophic medical event like a stroke or heart attack. Unfortunately, they might sometimes lay there for several days, alone and possibly in pain, frightened of never being found.

The thought of a patient suffering in this manner always makes me shudder.

Descriptions of poor living conditions sometimes accompanied these patients, as well, but none to the degree that Charlene described. "Seriously, Dr. Jim, the prehospital team said that feces was even smeared on the kitchen counter." Maybe this patient simply struggled after going down, making a bigger mess of things.

I briefly observed this patient's body--her frailness, her thin, cachectic limbs, her slightly protruding belly, her transparent pale skin, her matted-down silvery hair, her deep facial wrinkles--before walking towards her head and squatting down to her face level, ready to introduce myself. "Maam," I said, caressing the right side of her face as I spoke, "I'm Dr. Jim and I will be taking care of you today." The patient stirred as I continued to stroke her face. And then, quite suddenly, she opened her eyes, searching eyes of hazel brown, that stared back into mine. After sizing me up, she gave me a big, confused, wondrous smile, the familiar smile of a good-natured dementia patient.

"Do you hurt anywhere, maam?" I asked, beginning my exam while the nurses continued to clean her. "No," she said feebly, shaking her head. I looked in her ears, her mouth, her nose. I listened to her heart, her lungs, her abdomen. I palpated every part of her body, rotating and flexing her joints to make sure she had no clinical evidence of fractures.

Outside of the obvious signs of dehydration and her frail body breaking down at her pressure points, I was happy not to find any obvious signs of injury or acute medical illness. Now, we could pursue a thorough heart and brain workup (including a head CT to rule-out a stroke) as well as several clearance x-rays and some additional urine and blood studies. More importantly, social services could be called to pursue further information on this patient's living conditions and social situation.

It was near the end of my physical exam on this patient, though, when I began to see the situation more clearly. As the nurses continued to clean the patient and I stood beside the patient auscultating her abdomen, the room's curtain flew back and a very meticulous, very well-dressed, very put-together woman hurried into the room. She was middle-aged.

"May I help you, maam?" I asked, pulling my stethoscope from my ears as both nurses looked toward the woman, taking her in as I'm sure I had done.

"Yes, I'm her daughter," the woman answered with severe enunciation, taking a corner chair while nodding towards the patient. I waited briefly for her next question, a question that never arrived--"How is my mother doing?"--while taking in her neatly highlighted hair, her pressed wool pants, her polished heels, her matching argyle blazer, the multiple bands of gold that hovered on her neck and wrists, her ring-covered fingers, her painted face. I looked back at the patient, now rolled to her other side, and back at this daughter again.

The dichotomy of the situation was startling.

I leaned against the wall, giving the situation a few minutes to play itself out. The nurses continued their diligent work, occasionally glancing at the daughter, while the daughter continued to sit comfortably in her corner chair. And watch. I didn't expect her to offer her help bathing her mother. And she didn't. I had hoped that she might offer to hold her mother's hand, though, or whisper some encouragement in her ear. But she didn't. No moments of tenderness or love ever came.

Finally, I went up to this daughter and introduced myself and the two nurses. "Can you please tell me what happened with your mother?" I asked, eager to hear what she could contribute to her mother's story.

"Well, we, my brother and I, hadn't heard from Mother for a couple nights, so we called her. When we got no answer, we went over to her house and found her on the kitchen floor."

"Any signs of trauma?" I asked. "No," she answered. "Any blood?" "No." "Was your mother awake when you arrived?" "Yes." "Did she complain initially of any pain or have any difficulty breathing?" "No."

After finishing my questions, none with answers that would change our treatment plan, I asked this daughter about the living conditions the paramedics had described.

"Oh, that," the daughter said, blase, "we think Mother may have tried to get back up several times and failed, creating such a big mess." I nodded my head, hoping this was the extent of it, hoping that there wouldn't be anything more to this story when social services investigated. But, by Charlene's account, the paramedics had said the whole house was in disarray, not just the kitchen. "My brother is over cleaning Mother's house now as we speak," the daughter added.

I continued. "And your mother has dementia but lives alone, I see?" She nodded 'yes.' "Why hadn't anyone seen her for at least a couple days? How often do you check on her? Who cooks and cleans for her?"

The daughter shifted in her chair. "Well, either my brother or I go over every day, but both of us were busy and thought the other had been over. We were wrong. We have a cleaning maid and meals delivered, too, but not on weekends."

Although most of the answers seemed adequate, something still made me uncomfortable about this case. Something I couldn't put my finger on. At this point, though, I saw this daughter's eyes glisten. "Maam," I said, acknowledging her first signs of compassion, "I'm sorry if these questions might upset you, but they must be asked. Your mother's health and care depend on your answers." She nodded her understanding.

After a few more minutes of talking with the daughter, I said goodbye to both her and her mother, but not before thanking the nurses for yet another awesome job of patient care. They are worth far more than what their paycheck reflects. I made a conscious decision to leave the rest of the social questions to our case management team and focus on the patient's medical care.

Unfortunately, the patient's kidneys had begun failing her, both from her moderate dehydration and from being clogged with muscle-wasting metabolites (rhabdomyolysis). She was admitted, obviously, for further medical care before ultimately being placed into a safe nursing home environment. She would never again be left alone at home.

I refuse to sit in judgment of this daughter. And the son I never met. But in my line of work, a healthy dose of suspicion is sometimes what the doctor must order. So I did. I have to trust that our system works.

I have several friends who recently lost their fathers. Just last week, my brother-in-law suddenly lost his mother. My world is filled with people who, regretfully, have lost one or both parents. Who have lost their spiritual guiders. Who would give anything to have just a few more minutes with their deceased parent. Who would do things a bit differently than this patient's family, I'm sure.

I know I would.

As always, big thanks for reading. This post is dedicated to those who give of themselves to benefit an elderly person in their lives. May your kindness and compassion be returned tenfold...see you again in a few days.


Heather said...

I recently quit the hospital to work in the realm of nursing education. I am printing this out for my baby nurses to read. Currently, their quandry is how to get out of cleaning poop.

Someday they will appreciate it so much more...

Eileen said...

I had my MIL come to live in the same house as me - we made a granny flat for her. This was the woman who had told my husband to drop me, I'd never fit in the family. Who always compared me and mine with her other son and his wife who both had PhDs and a beautiful home. Who had no more idea than fly of how I worked from home, looked after the family - and rarely refused to go and sit with her twice a day for a cup of tea. However busy I was.

She was my husband's mother - her other son wouldn't even visit her unless it suited him. How could we move her to Scotland when they lived south of London? How inconsiderate! He hated her, he told me once - I never knew why but I could imagine why. I could never have lived with myself had I left her to get into that sort of state. Had I not been prepared to do it, then we would have spent money on someone to go and make sure she was OK and not living in a state no decent person would leave their dog in. Even if that had meant I couldn't go to Macy's. We were not rich - comfortably enough off for our own family of four but not vast amounts more.

When we choose to have children we take on a responsibility - this woman had obviously done some of what was her job for her son and daughter to still be around. We in our turn also have a responsibility back - IF YOU CHOOSE TO STAY AROUND THAT CLOSE.

I have no doubt they would be there in the front row when the will was read. My brother-in-law was. He arrived on our doorstep with empty boxes to pack up all that was of value from her rooms - even removing things that were in my part of the house that we had been given by her that he recognised. He'd had free choice of everything from her old home before she moved to us. I got the left-overs.

If you really have that big a problem with your parent - you can choose to leave at a much earlier stage than this. But that should mean you give up the lot - not just the hard work. I had a grandfather who lived with us, who told me once (age 10) it would have been better if I had died in an accident I had at 4 years old. He had dropped me like a hot brick when my brother was born - the desperately wanted son had never appeared. One day I saw a series about the First World War with film about the Somme and what the men went through there. Then I understood where he came from and why he was as he was.

However bad any person seems - I try to remember that. I'm not perfect but nor is anyone else so it works both ways.

Katie Axelson said...

Wow. My aunt's mother was moved out of her private home a few years ago after she had fallen in the garage. At 92, she was the only person... ever... who had never confused my sister and me. At 93, she greeted Laura with my name, hugged her, and said, "That's not Katie. That's Laura." At 94, dementia has sent in to where she was surprised to discover it was her own birthday. Caring for her through this has been a challenge for my aunt (an only living child, nurse, married mother of two). My other uncle (not her husband) lost his father in January. It's a hard road. My parents, sisters, and I are precariously progressing knowing that with four independent grandparents someday my family's own challenges will come. However, this post served as a great reminder to cherish the "Just callin'; don't need nutthin" messages on the answering machine and emails with nothing but a weather report.

In response to your comment on my post, sometimes it is incredibly difficult to pinpoint five acts of compassion. I think this post here shows several. :-)

As for how we're doing... this novel of a comment is already long enough.

<>< Katie

rlbates said...

Very sad

Anonymous said...

You know, I try not to pass judgment in these circumstances. Sometimes, we see families that have tried everything under the sun to get their mom or dad the help and care they need, only to have it refused. And sometimes, it's elder abuse, plain and simple.

Empress Bee (of the high sea) said...

i fear this very thing. my mother had dementia, she was very good about food and cleanliness though and she walked every day. she was also very good at hiding the dementia. you wouldn't know it unless you were with her for over a half hour, then she'd start all over with everything she said like it never happened. physically she was very healthy though, and weighed about 96 pounds. what happened? she fell and broke a hip, got into a rehab after surgery and was doing really good and got cdiff (don't know if i spelled that right) and that was the end. she was 88. she said she never wanted to go into a nursing home and she didn't want to move in with me and so she stayed in her little condo. she was very happy.

smiles, bee

Nanci, RN said...

You are a fortunate MD who works with "true nurses!" It IS hard to see a situation like this; however people like you and the nurses you work with make this a better patient at a time.

Holly said...

another tremendous post. Sad, but since we do not know the history we really cannot pass judgement. I hear horror stories from the adult child side often enough. Parents that could not be pleased, who pushed the children away, children who were chosen as the one who got all the anger directed at them. We do not know.

Eileen, you are a generous heart. I hope that my daughter and son in laws will treat me this well should it ever come to that for me.

Holly said...

One of the reasons I come here, ERdoc, is to read the comments.

Very often, they open up another side to the story and all are thoughtful.

Anonymous said...

Nice thoughts. As I was reading this and having flashbacks I began to feel some disgust and I stated to place blame on the daughter & son. When you ended with compassionate thoughts & comparisons to your life (and mine) I was completely caught off guard. Thanks

SeaSpray said...

Hi Jim - moving post. very sad situation. Unless one knows the situation,it is not fair to judge.

Okay, one thing. I often tried to get my mother to wear better clothes.Even took her out shopping. She always went back to her old, over sized tattered clothes because she always found something wrong with the new ones. I wondered what my coworkers thought when Mom showed up in the ER in the old clothes and I was dressed nicely.

Once she told me she told the nurse in the Dr's office that her daughter doesn't like her clothes.
Then I felt bad, that maybe I hurt her feelings, when I was really trying to help her.

Once she almost died, because even tho I could immediately see she needed emergent care, against my better judgment I backed off from calling an ambulance for her because she lashed out at me in a strong voice and I think hell was in her sentence, even tho I could see she was very ill.

Mom was a good person, but fiercely independent and testy. It is not easy when the child has to become their parent's parent... and the parent is afraid of losing their independence. And if the parent isn't cooperative is really hard.

My husband's grandmother was very loved by all of her children. very close family. I always told my friends that marrying into my husband's family was like marrying into the Walton family,loving and close.

His grandmother never went to a doctor. The last year of her life her stomach enlarged (they thought she was gaining weight) and began having difficulty with breathing/coughing. She absolutely *refused* to go to a doctor. On her last birthday (79) she was falling asleep in chair because she was up all night with respiratory problems. One of her adult daughters said to a sister that she was worried about "Mom" and what could they do because she refused medical treatment?

I relayed this info to an ER nurse and ED doc I worked with. Not long after, she was brought up via ambulance for difficulty breathing. That same doc and nurse were on and later told me that the paramedics said they suspected elder abuse because the family hadn't taken her for medical treatment. My friends/coworkers said,"No don't understand..." and explained the situation.

She had been combative with the paramedics at the house because she was so oxygen deprived.

Turned out she had COPD and had to be intubated. (That was a mistake because she never would've wanted to be kept alive, but when the ER doc came out to family and said her heart is strong, but she can't breathe on her own. Do you want us to do everything possible to help her and the family unanimously said "YES!", not realizing they were condemning her to being bedridden in a medical environment ..hooked up to machines when she never would've wanted that. Mercifully, she died a month later. The larger stomach was an aneurysm.

You were wise to reserve judgment.

With hindsight being 20-20 and mom will be gone 2 years in April,I wish I had overridden/ignored her temper or my discomfort when there and pushed to do what I knew she needed. I worked for LifeLine too and often told clients not to have loose rugs and things in the way to help prevent falls. My mother yelled at me when I tried to guide her. She took it as though I was telling her what to do and I was not at all pushy or rude with mom. I admit, I gave up and sometimes couldn't wait to leave.

The last thing I would've needed while sitting by mom's bedside would be to be judged by the staff. I loved mom. It was not easy and I did my best at the time. That being said ,I wish I did more.

I always told her I loved her and I held her close and long every time we parted if it might be the last time. My heart would secretly break when I could feel her once overweight body petite and frail in my arms and I was afraid of losing her ..or that she would die alone.

SeaSpray said...

I just want to add that I think most elderly and disabled people should have a medical alert button in case of emergency ..either accident or illness. They do save lives and prevent people from being down on the floor for long.

No one ever plans to have an accident or illness ...but they do happen. Having a medical alert button can help people live independently longer and even allow then to live with their pets longer. It also helps to provide some peace of mind for both the clients and their families and friends. One press of the button and help will be called.

Mom had LifeLine, but there are other companies too.

I hope you don't mind my saying this. I just know of so many stories in which people were helped because of this program.

Wren said...

What a sad situation for that poor old lady. Her grown children, too. While there may have been active neglect (which is disgusting) this seemed to me to be more a situation of miscommunication and, perhaps, denial regarding their mother's ability to be left safely alone. I'm glad that the old woman is now getting adequate, competent care.

A good story, Dr. Jim. Thank you for sharing it.

Winking Doll said...

Holly wrote on March 7, 2011 7:54 PM:
"children who were chosen as the one who got all the anger directed at them"

Yes, I am one of those adult children. On top of that, the chosen one for ridicule [including in front of strangers] and the chosen one to sacrifice hard-earned personal assets.

As I did not complain much to my siblings until recent years, my siblings had assumed that I was irrationally bad-tempered when I burst out in anger whenever I reached the end of my tether. A few years ago, my 2 sisters and a brother-in-law personally witnessed my mother's verbal ridicule directed at me. And the room hung in shocked silence.

After I joined nursing, my mother through her proxy of her siblings indicated that they have appointed me to be my family's main care-giver (based on comments from my aunt at end-Oct 2009 and my uncle in Feb-2010). And even the main care-giver for her extended family (based on requests from my aunt in end-Feb 2010). Just before I migrated, my mother made further financial demands of me, in favour of my brother who earns several times my income. When I shared about such demands made of me over the years with my sister and her husband, they realize the iceberg that they have missed out.

It is both sad and traumatizing for the adult child. Even now when I've migrated half-way round the world, I still wake up occasionally in the middle of the night, crying and wondering how and why a mother-daughter relationship could be that mutually destructive. For my own sanity and self-esteem, I have no plans to return.

Trust me. It is hard to live with such dichotomy. On the one hand, one's friends and colleagues are amazed at one's patience and caring nature. On the other hand, my mother's verbalized opinions of me being "selfish, impatient and rude".

Winking Doll said...

p.s. To count my blessings, I am lucky. My dad and my siblings love and accept me as I am. Especially my dad. They have been supportive of my decision to migrate.

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terri c said...

Yes--it sounds awful--but as the other commenters note, it may be more complicated. Sometimes it is, sometimes not. Hope she had some quality time left. I do think it is easy to miss deterioration if one sees the person often; the changes are slow, until they aren't.

myonlyphoto said...

Jim another heartbreaking story. It is hard to believe, but things like that exists, where kids just worry about their own lives. You are so right about the nurses, I seen it happened with my grandmother. Thanks for sharing again, Anna :)

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Hold my hand: a social worker's blog said...

I'm visiting your blog for first time, and I find it insightful and enjoyable. I particularly liked reading this post. As a nursing home social worker, I see this type of situations--and worse--often.

I'm glad that elderly patients like this one find in a nursing home a place where they can receive the care they need, and the protection that was lacked by their children or families.

I think a lot of times, children fail to do more because mom is stubborn and insists in living independently, and children know nothing or very little about other options for elderly protection, such a Department of Senior Services, etc. Other times, children simply don't want to go against their parents wishes, which for the most, is "not to die in a nursing home."

Nursing homes have changed remarkably. Regulations are more strict, and care is provided on a holistic manner.

Your post was beautifully written. Thanks for sharing.


canoehead said...

My mother left me in the hands of a molester and says now she had no idea. She denied parts of our family history that made her look bad, and left me trying to negotiate a relationship with her side of the family with no idea what the real story was. She says she wants no part of a nursing home, and wants to be left alone in her old age. I plan on doing exactly what she has requested.

Anonymous said...

I lost my mom to cancer when I was 8. In high school, when my friends would complain about their mother's being mean and saying they hated them, I would be the first one to jump to the mom's defense. Stories like these break my heart. I'd do ANYTHING to spend another minute with her.