Compassionate, informed advice about healthcare decision making

Posts Tagged ‘dementia’

Making End-of-Life Decisions for Dementia Patients

Posted by

“We didn’t want to put him through that again,” she told me. I wrote previously about my childhood friend eventually dying with dementia after years of decline. His wife decided not to send him back to the hospital.

Here’s the question families of dementia patients face as they consider end-of-life decisions: Shall we save his life so he can become more demented and slowly decline further or shall we let him die peacefully? I have been thinking about end-of-life decisions for dementia patients because I just was interviewed for a podcast that focuses on helping family caregivers of these patients. Listen to “Rodger That” for my interview and scores of others.

With almost four million copies of my book Hard Choices for Loving People in circulation, I’m pleased to say I’ve received very few negative comments about the book. One person did push back against my characterizing dementia, like Alzheimer’s, as a terminal disease. People don’t die from dementia, they die from other conditions like pneumonia, they said.

Dementia IS a terminal disease

In my view, dementia has all the earmarks of a terminal disease. The patient declines over many years. The general trajectory is downhill although they may recover temporarily from some setbacks. Had they not had dementia they probably would have lived longer. The end is always in death. Sounds pretty terminal to me.

Me and my mother at a memory care facility the year before she died.

As with any end-of-life decision, trying to discern what the patient would have chosen is paramount. Consider this question the physician asked me and my sister after mom fractured her hip in the memory care facility, “How did your mom feel about her dementia?” He didn’t ask whether or not she would want hip surgery. Mom hated, hated, hated losing her mind. It was clear our goal was just to keep her comfortable.

I would venture that everyone fears ending up living their last years where you do not know your family members, are incontinent, and are dependent on others for dressing, eating and toileting. Who wants this?

Then why, oh why would a family decide to save the life of a patient in this condition when they could have opted for comfort care and allow a natural, peaceful death? I think most of us would choose an earlier exit from such a fate.

My mother’s doctor helped clarify this for us with his pointed question. We said, “No. Mom would not want any treatment that would extend her life.”

Letting go and letting be

A word of encouragement to those who may face making decisions for a demented patient: I have found, in general, families are able to get to a place to allow a peaceful death at the right time. The truth is the patient has been dying bit by bit for years. These families have been grieving the loss of all the pieces that make up the person they love — their memory, their health, their expressions of love, and so much more.

When it comes time to say, “Let them go peacefully,” it is just the next step because they have been letting go all along. It is time to just let things be.

Coming to Terms with the Loss of Control

Posted by

  • Citibank… “Personal Loan — Take Control of Your Debt.”
  • ACP brochure from Rochester, NY… “Advance Care Planning — Know your choices, share your wishes: Maintain control…”
  • Sears MasterCard… “Take control of your finances.”
  • SunTrust Bank… “Stay in control — transfer money where you need it, when you need it.”
  • National Car Rental… “Take Control. Join the Emerald Club Today.”
  • TSA PreCheck… “Take Control of Your Travel.”
  • VW… “A new Volkswagen means a new adventure: Take Control.”

Do you see a common theme in these ads?

Advertising professionals hook us by using the word “control” all the time. They know how important it is to us. We spend our lifetimes trying to gain control. Yet, when we come to the end of our lives, we must let go of so much control. When I speak at events, I always leave this topic for last — “Coming to terms with the loss of control.”

My favorite quotes on letting go of control at the end of life

Elaine M. Prevallet, S.L., “Borne in Courage and Love: Reflections on Letting Go,” Weavings, March/April, 1997

“The idol of control holds out to us the hope that suffering and death can be eliminated. If we just get smart enough, we will gain control of pain and even of death. That false hope, in turn, has the effect of setting suffering up as an enemy to be avoided at all costs. We can choose never to suffer!”

Daniel Callahan, The Troubled Dream of Life: Living with Mortality

“Self-respect and integrity need not, and ideally ought not, to be grounded in a capacity to control our lives and mortality.… What has come to count too much is that our choices affect outcomes in the world; we are at sea when we cannot do so. Modern medicine and the modern temperament … reject solving problems of illness and death by adopting an interior stance of acceptance, choosing instead action and domination.… Our capacity to act, to do something, is cherished — something preferably affecting the outer world of nature rather than the inner world of the self.… We do ourselves a great and double harm by focusing the meaning of self-determination, and the shaping of a self, on our capacity to make external choices, to act.”

Scene from the play and movie W;t (Wit), by Margaret Edson

– VIVIAN (Terminally ill patient): I can’t figure things out. I’m in a quandary, having these … doubts.

– SUSIE (Nurse): What you’re doing is very hard.

– VIVIAN: Hard things are what I like best.

– SUSIE: It’s not the same. It’s like it’s out of control, isn’t it?

– VIVIAN (crying, in spite of herself): I’m scared.

Viktor Frankl, Man’s Search for Meaning

Frankl was a psychotherapist, author, and holocaust survivor. He discovered that, even when he had lost so much control, he still had the freedom to choose his response to his situation.

“Man can preserve a vestige of spiritual freedom, of independence of mind, even in such terrible conditions of psychic and physical stress.… Everything can be taken from a man but one thing: the last of the human freedoms — to choose one’s attitude in any given set of circumstances, to choose one’s own way.… In the final analysis it becomes clear that the sort of person the prisoner became was the result of an inner decision, and not the result of camp influences alone.… It is this spiritual freedom — which cannot be taken away — that makes life meaningful and purposeful.”

The Serenity Prayer

“God, grant me the
“Serenity to accept the things I cannot change, the
“Courage to change the things I can and the
“Wisdom to know the difference.”

How to Get to “It Doesn’t Matter!”

Posted by
“Pass through this brief patch of time in harmony with nature, and come to your final resting place gracefully, just as a ripened olive might drop, praising the earth that nourished it and grateful to the tree that gave it growth.” Marcus Aurelius, Meditations, 4.48.2, quoted in The Daily Stoicby Ryan Holiday, p. 26

 

My father, Hampton Dunn, age 33, managing editor, The Tampa Daily Times

In many ways, my father’s death wasn’t particularly remarkable. His physical and mental abilities just went downhill and after four years in a nursing home — he died.

And, in many ways, his life was not so remarkable when compared to others who grew up in the Depression and fought in World War II.

Further, in many ways, his emotional and spiritual journey in his last days, months, and years were not unlike hundreds of others I had accompanied during my time as a chaplain.

I’ve been thinking about these things as I prepare for a virtual talk I will give on February 4th on the emotional and spiritual concerns at the end of life. Last week, I listed the seven concerns I have noticed in my work and research. One of the concerns is “Gaining a sense that what is happening is okay: ‘Letting be.’”

Writing became my father’s life

Dad (right), age 49, public relations director, AAA

My father never finished college. It was 1936 in the depths of the Depression. He got his dream job as a newspaper reporter and never finished his degree. Some fifty years later he did get an honorary doctorate from his former school, the University of Tampa. Writing became his life: first at the Tampa Daily Times; then on TV in Miami; then back to Tampa as the public relations director for AAA; and finally, after retiring from his day job at age 70, he went back into TV work.

Hampton Dunn, age 73, TV personality

It was that final TV stint, doing a two-minute spot each week featuring an on-location story about Tampa history, that gave rise to my dad teaching me a lesson on how to prepare for death.

Dad developed Parkinson’s and had to give up writing, public speaking, and TV. He could no longer type or turn the page in a book to do research. He eventually needed assistance for all activities and a nursing home was the only answer.

A moment of insight… and acceptance

Me with Dad, age 82, nursing home resident

One day we picked up dad at the nursing home to go out for a drive. I was driving. My father was in the passenger seat. My mother and nephew were in the back seat. We got stuck at a traffic light in the dense suburbs of North Tampa. Across the intersection, on the far corner, stood an abandoned forest lookout tower. The forests are long gone, and the tower is now a historic site. From the back seat, Mom said, “Your father did a TV spot at this corner.”

Dad corrected her, “I did several!”

Still stuck at the light, I thought I could pass the time, so I asked, “When was that tower last used as a fire tower?”

Dad started thinking. That date was locked in his brain somewhere but the damage from Parkinson’s and strokes prevented him from finding it. Knowledge of history was so important to my father. He had written eighteen books on Florida history and now he could not remember a date.

Slowly he turned to me and with a big grin on his face he said, “It doesn’t matter!” He had gotten to the point of “gaining a sense that what is happening is okay.” Others have characterized this as “acceptance.”

My dad never looked forward to his decline, but when it came, so much else didn’t matter. It was “okay” in the sense that the vast majority of humanity follows this same path of decline toward the end and now he had accepted it, too.

Friends, Alzheimer’s and My “Profound Hearing Loss”

Posted by

Sixteen years ago, I remember sitting in a movie, not understanding even half of the dialogue. Of course, my family had been complaining about my hearing or lack thereof. But it was the movie that pushed me to have my hearing checked out.

I remember sitting in the sound-proof booth with headphones on listening for the faint sounds the audiologist sent my way. I was so thankful I could hear the faintest of the sounds. It came as a shock to me when I came out of the booth and the audiologist said, “Mr. Dunn, you have profound hearing loss.” What was a faint sound to me would have been a loud noise to others. I had deceived myself.

Over the years I have gone through two sets of hearing aids. On my birthday in 2014, I got a cochlear implant at Johns Hopkins in Baltimore. These devices are not perfect, but I was heading toward complete deafness.

Here’s the scary part. I found a recent article in JAMA that said, “Individuals with hearing loss had a 55% greater risk of developing dementia compared with those with normal hearing. Furthermore, the risk of dementia increased linearly with the severity of hearing loss.”

Friends are good for our mental health

 I once spoke at an Alzheimer’s Association conference where I shared the program with a physician/researcher. He ended his lecture wanting to leave on an upbeat note. We can’t prevent Alzheimer’s, but we can reduce the risk. He then listed three things we can do to reduce the risk of dementia. He said:

  • Walk one-half hour every day.
  • Fight depression at all costs.
  • Have two or three close friends.

Last year, I saw a story on the NBC Nightly News with another list, this time from Rudolph Tanzi, a professor of neurology at Harvard University and the director of neurology at Massachusetts General Hospital. He suggests an approach he calls SHIELD, an acronym for lifestyle factors that appear to help reduce the risk of developing Alzheimer’s. They include:

  • Developing good sleep habits
  • Getting a handle on stress
  • Interacting with friends
  • Exercising daily
  • Learning new skills
  • Eating a healthy diet

Those pesky friends show up again. How do friends help prevent me from losing my mind?

The brain continues to change and friends can help

I got a clue about the friends piece in a recent podcast from Brené Brown with David Eagleman on his book Livewired: The Inside Story of the Ever-Changing Brain. Eagleman is a neuroscientist who is curious about the brain — how it is mysterious, malleable, constantly changing, and up for new challenges. He believes that our brains are “malleable” because they can — and do — change in response to new situations.

Dr. Eagleman also endorses “learning new skills” from Dr. Tanzi’s list above. “Does malleability depend on us trying new things?” he asks. “If you are challenging yourself, you are building new roadways.” He suggests learning new skills from learning a foreign language to brushing your teeth with your other hand.

Where do the friends come in? “Other people is the hardest thing that brains deal with,” he continues. “The degree to which one can maintain an active social life is massively important.” Carrying on a conversation requires that I pay attention. I never really know what the other person is going to say. I build those new roadways in my brain in my response.

He goes on to say that “blind people are generally happier than deaf people because they can communicate.” And this interaction can help ward off dementia.

Social distancing and friendships

So, I’ve adapted. Bluetooth sends the TV audio directly to my brain through the cochlear implant. Headphones make phone calls and Zoom meetings very workable. The most difficult situations are social settings — a crowded party with lively chatter all around or a noisy restaurant. These are exactly the places in non-COVID times where I might meet those friends who are so important to my mental health.

I plan ahead. No more Mr. Nice Guy, “You sit down first, and I’ll just take what is left.” I take the seat at a table where I will be more likely to hear others. I’ll tell people, “I can hear better if I am in this seat” and not have a hint of embarrassment.

Social, or physical, distancing is hard on friendships. I tend to be an introvert who has not developed friendship patterns with a lot of talking and visiting. This year has made me more acutely aware of this missing piece. Turns out my future mental health depends on it.

“How did your mom feel about her dementia?”

Posted by

I have just spent the last days at my mom’s bedside, in meetings with physicians, having discussions with hospice nurses, and in dialog with my brother and sister. Mom has been on a downhill slide for seven or eight years . . . probably Alzheimer’s.

“I don’t like what is happening to me.”

Her’s was a very normal course of the disease. At first she lost things. She asked the same question every five minutes. She made scores of contributions to bogus “charity” organizations—something she had never done before. She voluntarily, although reluctantly, gave up driving. As these incidents started to repeat themselves, more than once, mom said, “I don’t like what is happening to me.”

Then she had to stop volunteering at the Moffitt Cancer Center . . . a job she loved for 22 years. There were trips to the hospital. During recovery from one such trip she said, “I think it is time to move into the assisted living.” My siblings and I jumped all over that and made the move in a few days.

She got her strength back and took to walking again. Most of the time it was quite harmless. But she did end up at nearby shopping mall once. Worried for her safety we agreed mom needed an alarm device attached to her ankle to keep her from wondering out of the building. If she approached the door an alarm would sound. Very embarrassing for her. She told the assisted living staff after several of the attempted escapes, “I wish I had a gun. I would kill myself.”

Of course, psych evaluations followed each of these outbursts and upon examination mom could not even remember saying such a thing or the embarrassing alarm that led to her despair. She got more depressed. Drank more wine. Lost interest in activities.

After she fell and broke her pelvis in the spring she entered hospice care.

So we moved her to be closer to my sister in Boulder, Colorado. We found a great dementia care center where she has lived the last fifteen months. The wanderings ceased to be a problem partly because of the layout of the building and partly because her mobility became so limited. The ruthless disease led to a general decline in her health. After she fell and broke her pelvis in the spring she entered hospice care.

So typical, in my experience, she actually improved after hospice got involved. The dementia moved forward but there was some upturn in her general health. Then it happened as I had expected. She fell and broke her hip. We refused a trip to the emergency room. They brought in a portable x-ray and confirmed the diagnosis. What to do next?

Thousands of elderly folks fall, break a hip, have hip surgery, go through rehab, and walk again. My sister found a story on the internet about a 105-year-old woman who successfully went through this course of treatment and fully recovered. Mom was only 92.

But mom did not have the mental capacity to rehab even if she could survive surgery. Oh . . . and she wasn’t walking unassisted BEFORE the fall. Why the hospital, the surgery, possible infection? For what end? Half of advance dementia patients who receive such surgery are dead in six months or less. My years as a nursing home chaplain taught me anecdotally that a hip fracture was the beginning of the end for most nursing home residents. My suspicions have since been confirmed with the research.

“How did your mother feel about her dementia?”

So my sister and I sat with a very competent, no nonsense, physician, Dr. Rogers, to plan out the course of treatment four days after the fracture. He started the conversation with a question. “How did your mother feel about her dementia?” My sister told me later she did not get the point of the question. I was thinking, “This guy is good.” He wanted to know mom’s opinion of her condition before the fall. We told him about “I don’t like what is happening to me,” and “I wish I could kill myself.”

He said, “Okay. Here is what we are going to do.” He looked at the very long med list and said, “We are going to stop all these medications except the morphine and add a drug for anxiety. We will offer her fluids but not force anything on her. Comfort is our goal.” He took mom’s desire to be free from a life with a mind that had been lost as an advance directive for comfort care only. We had no wish to hasten death or cause it. We were just letting things be.

Why would we think the patient would want to be saved from death?

If a patient is not happy with their life before a crisis, why would we think they would want to be saved from death? Death will happen to all of us. And when we are burdened with years of disability, disease, and dementia, why oh why would we want to put off the death we welcome? I can’t tell you the number of patients, in the same situation as my mother, who are rushed to the hospital and their lives are saved for months or years of ever worsening conditions.

The doctor hesitated and referred to me as the “chaplain of death.”

I had a patient once at the nursing home whose dementia had advanced to the point where he did not know his wife, wandered the halls, and urinated in the corners. He had a long and proud career in the FBI and was now reduced to living most people’s worst nightmare. I suggested to his wife that she speak with the physician about a “No CPR” order. She reported back to me that when she requested the order, the doctor hesitated and referred to me as the “chaplain of death.”

I was shocked. Here I had done the hard work for him in addressing the emotional and spiritual issues and sent a caregiver to him requesting what, in my view, was a most appropriate order. If this patient could see himself and have a right mind, I am certain, and so was his wife, that he would welcome death. His heart stopping was the only way to be free from the dementia ravaging his mind.

God bless the Dr. Rogerses in this world who start with trying to establish how the patient feels about their condition. If the patient would see death as a welcome release then the treatment plan that allows a natural, timely death to occur would only make sense.

Mom died peacefully eleven days after the hip fracture.

Quality of Life Publishing Logo

Quality of Life Publishing Co. is the proud publisher of Hank’s books, as well as other branded educational materials for health care & end-of-life care.

www.QOLpublishing.com

Copyright 2021, Hank Dunn. All rights reserved. Website design by Brian Joseph Studios

Volume Discounts for Branded Book Orders

Minimum quantity for branded books is 100. English and Spanish branded books are sold separately. Click here for more information or contact us with questions.

Black

  • 100 to 249 copies: $4.00 each
  • 250 to 499 copies: $2.84 each
  • 500 to 999 copies: $2.24 each
  • 1000 to 1499 copies: $1.69 each
  • 1500 to 1999 copies: $1.43 each
  • 2000 to 3999 copies: $1.30 each
  • 4000+ copies: $1.11 each

Color

  • 100 to 249 copies: $6.65 each
  • 250 to 499 copies: $3.95 each
  • 500 to 999 copies: $2.79 each
  • 1000 to 1499 copies: $1.96 each
  • 1500 to 1999 copies: $1.61 each
  • 2000 to 3999 copies: $1.44 each
  • 4000+ copies: $1.17 each

Volume Discounts for Unbranded Book Orders

Discounts apply to the total books ordered of all titles. Mix and match to get quantity discounts on unbranded books.

  • 1 to 9 copies: $7.35 each
  • 10 to 24 copies: $5.13 each
  • 25 to 49 copies: $4.24 each
  • 50 to 99 copies: $3.75 each
  • 100 to 249 copies: $2.87 each
  • 250 to 499 copies: $2.37 each
  • 500 to 999 copies: $1.98 each
  • 1000 to 1499 copies: $1.54 each
  • 1500 to 1999 copies: $1.32 each
  • 2000 to 3999 copies: $1.21 each
  • 4000+ copies: $1.05 each
There are no products