Compassionate, informed advice about healthcare decision making

Archive for the ‘Dementia’ Category

Feeding Tubes: Guantanamo NO; Our Parents OK

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Here is a great piece that was in the New York Times yesterday. It powerfully tells the truth that feeding tubes for advanced dementia patients cause more pain with no benefit.

http://www.nytimes.com/2015/11/24/opinion/force-feeding-cruel-at-guantanamo-but-ok-for-our-parents.html?smprod=nytcore-iphone&smid=nytcore-iphone-share

Photo by Ye Jinghan on Unsplash

Is the Advanced Alzheimer’s Patient No Longer a Person?

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Good question.

As people lose their memories, can no longer say who they are, can no longer recognize those closest to them … what’s left?

Blame it on the René Descartes

Blame it on the French. Well…actually, one Frenchman, René Descartes (1596-1650). He wanted to know, “What can I really know for sure?” His conclusion was, “I am thinking.” He then gave us, “I think, therefore I am.”

Fast forward to our effort to understand what is going on in the minds of dementia patients. These people are losing the ability to think. Eventually, they cannot recall the stories that made them who they became as adults. They cannot recall what they had for breakfast. They cannot tell you who they are.

So if Descartes is right, who are we when we can no longer think? Could we say, “If I don’t think, therefore, I am not”?

“Consider the phrases used [in the vast medical literature] to describe Alzheimer’s impact: ‘a steady erosion of selfhood,’ ‘unbecoming’ a self, ‘drifting towards the threshold of unbeing,’ and even ‘the complete loss of self.’” I got that sentence from a new book by Anil Ananthaswamy, The Man Who Wasn’t There: Investigations into the Strange New Science of the Self.

I just got back from speaking at an Alzheimer’s conference in Washington state. They wanted my standard talk based on my book Hard Choices for Loving People about making end-of-life decisions. I also had 90 minutes to talk about the emotional and spiritual issues at the end of life. Part of my lecture looked at the loss of the self.

But thinking is not all of who we are

Ananthaswamy’s book has a whole chapter dedicated to Alzheimer’s disease and the self. The chapter is 35 pages so I am looking at just one aspect of all this. It is true that much of what we consider “the self” is lost as dementia progresses. But thinking is not all of who we are. There is an embodied self, that literally is located in our physical body.

We learn to ride a bicycle as a child and do not ride again for 30 years. We don’t have to “think” about it. Our body knows how to ride again as an adult. Quick. Which finger do you use to type the letter “C” on the keyboard? Perhaps you could not tell me which it is but could immediately type it “without thinking.” That’s the point. There is a self unrelated to thinking, an embodied self.

The author related a story from one of the physicians conducting research on advanced Alzheimer’s patients and the self. I personally have experienced the same type of example of the embodied self.

The man said the prayer word for word in Hebrew

While I was a nursing home chaplain a local rabbi invited us to bring our Jewish residents to his synagogue. They had recently received a Torah restored from stolen scrolls hidden by the Nazis during World War II. One of our residents was a man with advanced Alzheimer’s. He could still walk and talk but did not know who he was nor who his wife of 60 years was. The man sat on the front row in the worship room with a yarmulke on his head and a prayer shawl over his shoulders as he had done in his younger non brain-damaged days. This man had not said an intelligible sentence in months if not years.

The rabbi brought the covered Torah to the man and asked him to recite the prayer said before the uncovering of the scroll. The man said the prayer, without hesitation, word for word in Hebrew. His wife next to him wept. I was in tears. A moment of clarity. Had we asked the man to repeat the prayer back at the memory care unit he would not have been able to do it. The synagogue, the rabbi, the yarmulke, the Torah, all connected with the self beyond thinking located in his body.

We all have this self. Only our thinking is so dominant that we do not recognize it. When the thinking recedes we are still there — in our bodies.

Photo by Artem Maltsev on Unsplash

Is Alzheimer’s a Terminal Disease?

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I say yes.

I have sold over 3 million copies of my book Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Disease. Only once, in the 25 years since the First Edition came out, I received a complaint from a reader who took issue with my claim that Alzheimer’s Disease is a terminal disease.

They told me, “You don’t die from Alzheimer’s. You die from something else like pneumonia, or a stroke, or cancer.”

Advanced dementia leads to what finally takes the patient

But I say, in most cases, the advanced dementia leads to what finally takes the patient. For example, pneumonia is a very common cause of death for these people. The end stage of Alzheimer’s is marked by increased eating difficulties and increased frequency of fevers. Getting food or fluid in the lungs can lead to pneumonia that can lead to death. 50% of advanced dementia patients who are hospitalized for pneumonia or a fractured hip are dead within six months.

There is even a recognizable “end stage” of this disease. Persons in the last phase of Alzheimer’s qualify for hospice benefits under Medicare. Families and physicians often modify the goals of medicine for advanced dementia patients. It is not unusual for a family to decline the use of antibiotics to treat pneumonia. This is an accepted standard of care.

It is helpful to think of this being considered terminal

In my view it is helpful for people to think in terms of this condition being considered terminal. You think in terms of how to best keep the patient comfortable rather than curing everything that comes along. It encourages everyone to do the emotional and spiritual work to prepare for dying.

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Slow Down, You Are Doing Too Much

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“Let her go in peace,” was my bottom-line message.

ER trips, IV antibiotics, bulb syringes … all had become extraordinary measures … in my view.

A woman called me out of the blue yesterday. A hospice worker had given her my Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness. I am not exactly sure what she wanted from me as she talked rapidly and pretty much constantly through our close to an hour on the phone.

This never-married woman was the primary caregiver for her 96-year-old mother. The old lady had suffered strokes and dementia was advancing. Because of the swallowing difficulty the daughter was forcing food into her mother’s mouth with a bulb syringe. This is a rubber device, shaped like a tear drop. You suck food into the bulb then stick the narrow end into the patient’s mouth and force the contents out.

Medical professionals encouraged the daughter to slow down

It sounds like the medical professionals in both hospice and the hospital have encouraged the daughter to slow down. But she has sent her mom to the ER three times over the last several weeks. “Maybe if they just give her some IV hydration she would start eating better,” her logic went.

Having listened for about a half hour I asked her, “What is the future for your mother?”

“She is dying.”

Bingo. She said what I was hoping for. In hundreds of such conversations over the years I have asked questions to help caregivers come to their own conclusion about the big picture.

Dying people stop eating and drinking at the end of life. Dying people probably will dehydrate leading to a more peaceful and compassionate death. Dying people talk less and sleep more. Dying people can get aspiration pneumonia once known as “the old man’s friend.”

“I feel so guilty all the time”

Then the lady moved into my chaplain’s area. “I feel so guilty all the time.” She wept.

“Guilty? For what?” Caregiver guilt is not uncommon.

Once, when she mentioned to a doctor she felt guilty for not doing enough, he said, “If you want to feel guilty about something, feel guilty for doing all this to your mother.” I wouldn’t have said it that way. But basically I suggested she start doing less.

I recommended that if she wanted her mother to have a peaceful death at home she not call the rescue squad, she not use antibiotics for aspiration pneumonia, and maybe stop using the bulb syringe. Oh…and she stop feeling guilty.

I actually have little hope she will stop feeling guilty as it has been her constant companion since childhood she told me. But I did tell her, “You can never make a wrong decision. You do the best you can with the information you have at the time. That is all we can ask of anyone. Maybe later will you look back and see how things could have been done differently. But in the moment you just do the best you can.”

 

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We Didn’t Want to Put Him Through That Again

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I just got off the phone with the widow of an old friend of mine. She called to let me know her husband died last week. I hadn’t heard. He was 70. Alzheimer’s.

I’m not sure he knew me

I last saw him in October on my way to a speaking engagement near Orlando. This was the week before he entered a memory care unit. I’m not sure he knew me. He told stories and laughed like he always did but his words made no sense.

We had grown up in the same neighborhood and I followed him three years behind to the University of Florida. He played baseball, me football. He went into law, me the ministry. Over the years I would stop by and we would go fishing. He loved to fish the lakes.

His wife told me he died from aspiration pneumonia. A very typical way for advanced dementia patients to go. They get food or fluid in their lungs and an infection follows. Often these patients are treated with antibiotics and the pneumonia is cleared up. Then the decline of the patient continues and they get pneumonia again, etc., etc.

“We didn’t want to put him through that again.”

They refused antibiotics and called hospice. She told me he died the most peaceful death.

Around Christmas he had gone into the hospital and “it was a horrible experience.” “We didn’t want to put him through that again.” They didn’t.

I told her she did the right thing. I said, “It is so routine to put the people in the hospital, pump antibiotics into them and they are saved only to get worse. I cannot say enough good things about how you handled this. It is so out of the norm but in my view the best of care.”

Hank

 

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Alzheimer’s and Hope

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I never thought I would see those two words together. Alzheimer’s and hope. Well, maybe, “I hope I never get Alzheimer’s.” Okay…I’ve heard that a lot.

I have been reading some really hopeful stuff from someone with Alzheimer’s Disease. David Hilfiker, a physician, is on a mission to make this eventually fatal disease less scary. Last September he was diagnosed with mild progressive dementia, probably Alzheimer’s. The Washington Post ran a story about David’s life now and his new vocation as one who is losing his mind.

Dr. Hilfiker has spent his life excelling. High School valedictorian. Standout at Yale. Med school grad and rural physician. Inner city physician for the poor. Founder of Joseph’s House, a hospice for homeless people with fatal diseases. Author of three books. Husband of 44 years, father and grandfather.

Our paths have actually crossed. We were members of the same faith community and in a mission group together for a while in the early 80s. I sent him a draft of my first book, Hard Choices for Loving People, and he was so kind to offer significant suggestions for improvement. That’s a whole other story. I had lost touch with him and then saw the piece about him in the Post.

Watching the lights go out

David is writing a blog about his experience, “Watching the Lights Go Out.” It begins last September with the diagnosis which confirmed his suspicions that he was losing his cognitive capabilities. He chronicles the mental mistakes he has made, the forgetfulness, preparing for a future in a nursing home, telling his family, friends, and church.

In February he gave a sermon to the congregation where he is a member, the Eighth Day Faith Community (part of Church of the Saviour). Titled “A Theology Out of My Life with Alzheimer Disease,” he tells of the lessons he has learned. He has learned to let go of shame and guilt for mistakes (whether caused by his disease or not). In other words, to be more forgiving of himself. He has become more emotionally available to his wife, family, and friends.

Live in the present

For me, the greatest lesson is one for all of us. Live in the present. He told the Post reporter the same thing, “’If I live in the future, it’s a very painful disease,’ Hilfiker said one recent afternoon as he sat at his kitchen table in Northwest Washington. ‘If I live in the present, it’s not.’”

Do yourself a favor. Go to his blog and sermon. I’ll stop with just a few quotes from his blog. Thank you David!

Perhaps this Alzheimer’s is allowing me to enjoy my life for the first time, not because things are any better, but because I’m more emotionally in touch with the goodness. I feel rooted, grounded.  I’m where I’m supposed to be.  I’m not looking for something else, something better.  And this gift comes through my disease.

So when I discovered I had Alzheimer’s, I could look back at my life without regret that I didn’t choose to do this or dare to do that.  Marja and I have had a good life.  And far from preventing me from doing things, so far this disease and its process have given me a richer life.  I now have a well-defined call and a fulfilling vocation (writing and speaking about this illness).  Sure, I’m younger than I hoped I would be when I contracted my last disease.  Certainly I would like to live longer, see my grandchildren grow up.  But we all have to die, and I’ve been given much more than most people.

And now I’ve been given this adventure!

[2016 UPDATE: Turned out he did NOT have Alzheimer’s and he wrote a final blog post to update his readers.]

Photo credit Nikki Kahn/The Washington Post

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