Shake, Rattle and Roll

Easing the Pain of Death

Last week was a blur of events and emotions. Mom passed away Monday, October 27, 2008, with her five children, two sisters and one niece surrounding her. Although we have yet to see the death certificate, most likely the causes of death will be complications from Lewy Body Dementia (LBD) including dysphagia (difficulty swallowing) and malnutrition.

My family got Catholic Community Hospice involved on Friday, October 24 after Mom failed a swallowing test the previous day. She suffered from LBD for more than three years. Mom had eaten or drank very little for nearly two weeks. My family declined a feeding tube knowing that Mom would not have wanted to continue suffering. On Friday, Hospice estimated that Mom had between two and seventy-two hours to live. Mom outlived their prediction by three hours.

By the time I arrived in Kansas City early Saturday morning, I was surprised that my siblings and aunts had come to terms with the inevitability of Mom’s death. When I inquired about their change in attitude, they attributed it to the Hospice care team, particularly the volunteers, most of which had suffered similar losses and were grateful for the assistance of Hospice.

When I asked my family to elaborate as to how Hospice had helped, their comments about the volunteers included the following:

· They knelt on the floor right next to Mom, prayed out loud, and talked to her as though she really could understand (hearing is the last sense to go).

· They held her hands when they talked and prayed to her.

· One volunteer called her by her nickname, Margie, not the more formal, Marjorie.

· They told us about the death of their spouses and how Hospice had helped him.

· Compassion was written all over their faces.

· They gave Mom permission to pass on to the next life and described heaven in glorious terms.

· They strongly encouraged each of us to tell Mom how much we loved her, what we appreciated about her and to give her permission to move on to heaven. When one of our aunts initially responded with “I don’t think I can do this,” their answer was “you have to do this.” The Hospice volunteers were able to gently confront my aunt, in a way that she could accept, and she did it.

I never realized that the task of dying was so complicated. The body completes its natural process of shutting down. Throughout the final stages, Mom’s respiration was measured and blood pressure, temperature, and pulse recorded. Mom’s comfort was maximized and pain minimized through Morphine and Ativan administered orally by drops under her tongue. Her breathing pattern was irregular with either big intervals between each breath when she seemed to be not breathing or rapid shallow pant-like breathing. Mom’s hands and arms seemed cool to the touch. The color on her feet and legs turned to purple as the circulation of her blood was decreasing. She seemed to be constantly sleeping and couldn’t be aroused.

The Irish Wake

Last Sunday morning one of the Hospice staff members had learned about Mom’s many visitors since her admission to the Hospice program two days earlier. She scolded me with “you should limit your Mom’s visitors to two at a time.” My immediate response was “this won’t work for our family.” She couldn’t possibly understand our large Irish family with its boisterous culture. We proceeded as though we hadn’t been warned. On Sunday afternoon, we created a party in her room at the nursing home that included story-telling, praying and sing-a-longs. By the end of the day, 29 people had visited Mom. It was an Irish wake, minus the alcohol, and a wonderful opportunity to celebrate Mom’s life before her death.

Mom deteriorated further on Monday. Mom nearly missed hearing farewells from two of her relatives. However, late morning, one of her daughter-in-laws stopped by to say her final goodbye. Also, my husband Tom phoned from Denver to say goodbye and gave her permission to go to the next life in heaven. We put the phone next to Mom’s ear, trusting she could hear.

Before she passed, my brother and I saw one tear falling from her right eye. Her breathing and heartbeat stopped at 3:36 PM, and she died peacefully. I was honored to be part of the dying process. Through Hospice, Mom died with dignity and respect. It’s the only way to go!

Related Resources:

Preparing for Approaching Death

http://www.hospicenet.org/html/preparing_for.html

Saying Goodbye

http://www.hospicenet.org/html/goodbye-pr.html

We Don't Get Out of This World Alive

We fear that our Mom who suffers from Lewy Body Dementia (LBD) will either choke to death or starve to death.

Mom was officially diagnosed with LBD three years ago when she exhibited signs of Alzheimer’s, Parkinson’s, hallucinations and delusions. Throughout this period, she has been hospitalized a couple of times, but primarily she’s remained in her own home with round the clock home health care.

Mom is now in a nursing home and has eaten and drank very little in the past two weeks. When she is fed or provided liquid, she frequently chokes. Mom has the swallowing problems (dysphagia) so typical of Parkinson’s patients. Aspiration pneumonia, a leading cause of death with Parkinson’s patients, often develops as a complication of mealtime swallowing problems, leading to the inhalation of food and drink.

Approaching the end of her life, Mom has experienced a decrease in appetite and thirst, and wants little or no food or fluid. It’s her body’s way of preparing for the final shutdown: death.

It’s a predicament – death by choking or by death by starvation. My brothers, sisters and I have difficulty accepting that there’s nothing more we can do, and that it’s beyond our control. No matter how hard we try, we don’t get out of this world alive.

Related Article:

Pitt Researchers Identify an Underlying Cause of Pneumonia Common in Parkinson’s Disease Patients at: http://www.medicalnewstoday.com/articles/121915.php

When Parents and Kids Exchange Roles

It was a bittersweet experience when visiting Mom in Kansas City. She is suffering from Lewy Body Dementia (LBD). I didn’t know if Mom recognized me or what she was feeling or thinking. I tried to put myself in her position, and if she could communicate, this is what I imagined her saying.

Message from Mom:

I used to be the Mom of this family. LBD is in charge of my body and mind and has turned me into an infant. Now I’m the baby of the family.

My daughter, Pat, spoon-feeds me what suspiciously looks like baby food, sweet potatoes whirled in a blender.

My son, Tom, bundles me in a blanket and walks me around the neighborhood in a wheelchair that looks like a stroller.

My daughter, Denise, spreads my youthful Irish face with lotion and applies lipstick.

My daughter, Kate from Denver, repeatedly says in a loud voice, “Mom, this is Kate, your oldest daughter.” I am not deaf, but everyone talks to me as though I am.

The "hired help" change my diapers and bathe me.

My words come out like baby talk as they struggle to understand. It is easier to remain quiet, but sometimes I articulate a five-word lucid sentence, and everyone is surprised.

“They came out real cute,” I utter when shown a photo of my grandchildren.

“We need a professional here,” when my daughter, who is not a beautician, attempts to cut my hair.

All my kids try to get a laugh or a smile out of me, their former Mom. I’m no longer the Mom but the baby of the family. I must now rely on them to mother me.

Related Resource:

Book: Mothering Mother by Carol O’Dell

I Thought Parkinson’s Was Bad Until Mom Discovered Lewy

I never heard of this disease until a couple of years ago. Nearly everyone knows about Alzheimer’s Disease (AD) which is the leading cause of dementia in the elderly. But have you ever heard of Lewy Body Dementia (LBD), which is now believed to be the second most common cause of dementia?

Mom was diagnosed with LBD in October 2005 (see Lewy Body posts on my blog). LBD is a cruel combination of Alzheimer's, Parkinson's, hallucinations and fluctuations in cognition.

Dementia plus two of the following three symptoms indicates a probable diagnosis of LBD:

Parkinsonian-like signs such as bradykinesia, rigidity and postural instability, but not always a tremor, e.g. a patient may be unable to sit up straight before involuntarily leaning to one side.

Fluctuating cognitive ability. Sometimes there will be daily shifts in lucidity or mood exhibited, even making the patient appear normal

Visual and other sensory hallucinations, e.g. a patient may repeatedly experience a single, identical, odor that can’t be explained.

Mom currently fluctuates between level 6 and 7 on the following dementia scale:

Level 6: Severe Cognitive Decline (Middle Dementia or Moderately Severe AD)

Occasionally forget the name of the spouse upon whom they are entirely dependent for survival.

Largely unaware of all recent events and experiences in their lives.

Retain some knowledge of their past lives but this is very sketchy.

Generally unaware of their surroundings, the year, the season, etc.

Possible difficulty counting from 10, both backward and sometimes forward.

Require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations.

Diurnal rhythm frequently disturbed.

Almost always recall own name.

Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment.

Personality and emotional changes occur. These are quite variable and include:

(1) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;

(2) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;

(3) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;

(4) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

6a - Requires Assistance dressing

6b - Requires Assistance bathing properly

6c - Requires Assistance with mechanics of toileting

6d - Urinary incontinence

6e - Fecal incontinence

Level 7: Very Severe Cognitive Decline (Late Dementia or Severe AD)

All verbal abilities are lost. Frequently there is no speech at all - only grunting.

Incontinent of urine, requires assistance toileting and feeding

Lose basic psychomotor skills, e.g., ability to walk, sitting and head control

The brain appears to no longer be able to tell the body what to do

Generalized and cortical neurologic signs and symptoms are frequently present

7a - Speech ability limited to about a half-dozen intelligible words

7b - Intelligible vocabulary limited to a single word

7c - Ambulatory ability lost

7d - Ability to sit up lost

7e - Ability to smile lost

7f - Ability to hold up head lost

Unfortunately, our Mom is at the point where she needs to be evaluated for hospice in the home. It’s been a sad day after Christmas trying to get the wheels in motion. And I thought living with Parkinson’s was bad. " I ain’t seen nothin’ yet.”

Resources:

Shake, Rattle and Roll: Kate Kelsall’s posts on Lewy Body Dementia
http://katekelsall.typepad.com/my_weblog/lewy_body_dementia/index.html

Lewy Body Dementia Association
http://www.lewybodydementia.org

Mary Gordon from Allexperts.com
http://en.allexperts.com/q/Alzheimer-s-Disease-1005/End-Stage-Lewy-Body.htm

Preparing for approaching death
http://en.allexperts.com/q/Parkinson-s-Disease-2096/tell-death-imminent.htm

Lewy Has a Grip on Mom

On an autumn day on October 6, 2005, our Irish clan piled in the office of Dr. Peter Holt, a geriatric internist in Kansas City. We were at the appointment to find out what ailed our 80-year-old Mom, Marge Doyle. When Dr. Holt opened the door to his office, he seemed surprised to see the Doyle family filling every inch of his office space. He affectionately gave us the nickname of the Doylies.

I immediately liked Dr. Holt, a tall, good-looking man with salt and pepper hair, a Kansas City boy, who after finishing medical school at the University of Kansas, completed a fellowship in Geriatric Medicine at Stanford. Returning home to practice medicine with the seniors, his sense of humor helped him handle the serious problems his patients faced – arthritis, Parkinson’s Disease, Alzheimer’s, strokes, cancer, heart disease and the everyday problems of getting old.

Dr. Holt wheeled over to Mom in his chair so that he could talk to her face to face. He tried to get Mom to explain why she had this appointment today. Mom thought the Doylies had forced her to come.

Dr. Holt was concerned when he discovered that Mom had no medical records, although she lived in the Kansas City area her entire life. It’s true – Mom never went to doctors except for the birth of her five children, with her youngest child being in her early forties. So we were starting from scratch here with no medical records.

My brother wrote a short history of Mom’s medical problems from his memory and from photos of Mom to illustrate his points. One photo of Mom from a year earlier showed Mom appearing to weigh more than 200 pounds with her short 5’2” frame, while at today’s appointment she weighed in at 98 pounds and looked like a malnourished concentration camp survivor. And she hadn’t even been on a diet, and no one could explain the weight loss.

A few years earlier, cooking had become too complicated for Mom. My brother and his wife stepped in and provided their own version of Meals on Wheels. Mom devoured their delicious home-cooked food.

Mom’s problems seemed to have started with the turkey incident several years ago when she dropped her baked turkey on the kitchen floor on Thanksgiving morning. The turkey meltdown forced my brother to scrounge around Kansas City to locate a baked turkey for Thanksgiving dinner in a few hours.

My siblings discussed Mom’s hallucinations (or as one of my sister called “Mom’s little delusions”). Mom was preoccupied with death and destruction, killing all of us off in her mind, a new funeral everyday for her sisters, her kids and her grandkids. And her hallucinations were scary and terrifying.

“What are you doing here?” Mom asked my brother, “You’re supposed to be dead. You can’t keep coming back from heaven like this.” For that moment my brother was the favored one, while the rest of us suffered in eternal damnation.

When Dr. Holt asked Mom her name, address and phone, she responded, “My name is Marjorie Doyle, and I live at 9235 Woodman. I know my name!” But she couldn’t remember her phone number. She dismissed it with a chuckle saying “I never have to call myself.” Now she can’t remember any of these important demographics.

At that appointment, Mom started calling herself Miss Marjorie or Miss Margie, as though she’s talking about another person. Marge and Mom were no longer in her vocabulary.

When the doctor asked Mom what day it was, I glanced at my daily calendar, so I could answer correctly. Mom didn’t have a daily planner and didn’t know the answer.

And Mom’s personality had recently changed. Her sweet, prim and proper, shy temperament had been replaced by cantankerous behavior and foul-mouthed language.

I was concerned that Mom might have Parkinson’s Disease. I told the doctor that I was diagnosed with Parkinson’s ten years earlier, and that I observed Mom’s stiffness and slowness when she moved, balance problems with always being on the verge of falling, her lack of facial expression, stooped shoulders and posture, and shuffling steps.

I gasped when Dr. Holt tested her balance by having Mom get up from the chair without using her hands. Mom nearly fell backwards.

At the conclusion of the appointment, Dr. Holt referred Mom to a neurologist. The neurologist confirmed Dr. Holt’s suspicions of the diagnosis of Lewy Body Dementia (LBD), a disease that we never knew existed. LBD is the second most common kind of dementia, with Alzheimer’s being the most common.

LBD is a complex blend of the confusion and memory loss of Alzheimer’s Disease, the stiffness and slowness of Parkinson’s Disease, and the hallucinations and delusions of Schizophrenia.

And only yesterday, I learned that Mom has the same disease as Ebenezer Scrooge of A Christmas Carol. In "Diagnosing With Dickens" by Lisa Sanders, M.D. in The New York Times Magazine on December 17, 2006, Dr. Sanders consulted with her nephew, neurologist Chance Algar, M.D. about the diagnosis of Scrooge and stated that:

“This was dementia, he told me, but not the most common forms – not Alzheimer’s or a dementia caused by multiple small strokes. No, this was a recently described variety known as Lewy body dementia.

Symptomatically, this disease lies at the intersection of Alzheimer’s and Parkinson’s disease and was first fully recognized in 1996. Although I saw Scrooge as a man without any medical problems, Chance explained, I had missed some subtle clues in Dickens’s description. The words used to portray Scrooge might apply to many with Parkinson’s disease: expressionless, rigid, nearly immobile. Dickens writes, “The cold within him froze his old features ... and stiffened his gait.” He also has a tremor, a symptom common in Parkinson’s as well as in this strange dementia. But the hallmark of Lewy body disease is the real clincher in this diagnosis: vivid and detailed hallucinations featuring friends and relatives are common. And like Scrooge’s visions, these phantasms are distressing, often terrifying. Finally, in Lewy body dementia, hallucinations occur early in the disease, frequently before the cognitive deficits are apparent.”

Lewy has a grip on Mom. I only hope that I can remember her as the Mom of the past instead of the Lewy or Scrooge of the present and future.