Compassionate, informed advice about healthcare decision making

Posts Tagged ‘dementia’

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

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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?”

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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.

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