Tips for Caregivers (from Janet Edmunson)

Janet Edmunson’s husband Charles was diagnosed with PSP in the late 90s.  After his death at age 50, a brain autopsy revealed he had corticobasal degeneration.  (The four disorders in our group are often confused for each other!)

After her husband died, Janet wrote a book titled “Finding Meaning With Charles: Caregiving With Love Through A Degenerative Disease.”  She is also an inspirational speaker.

A radio interview she did on the topic of caregiving is available online.  Go to this webpage:

And then click on item #2.

On her website — — she has some tips for caregivers.  (I especially find the message that “stress makes you stupid” to be resonating loudly with me these days.)  Her tips are copied below.



Tips for Caregivers
by Janet Edmunson

Difficult experiences teach us precious lessons of wisdom. During the later stages in dealing with Charles’s disease, I had learned quite a few lessons:

Don’t wait too long to get help. Trying to do it all seemed like the only way at first, but that eventually wore me down. I hadn’t thought that Charles would accept help from home health aides-especially female ones. In retrospect, I found that once he had the help, he quickly got used to it, after a bit of complaining. I ended up missing out on needed help earlier in his disease.

Stress makes you stupid. I couldn’t concentrate, couldn’t find the right word I wanted, or I would just forget things. I understand that there is actually a physiological explanation for this phenomenon: Stress can impact our ability to think clearly. I was glad to realize that I wasn’t really losing my mind.

Surround yourself with positive people and messages. I felt uplifted when I listened to the Norman Vincent Peale tape we had ordered for Charles through the National Library of Congress. Peale’s affirming theme of “you can if you think you can” gave me courage and assurance that my positive attitude was what would get me and Charles through. Two other quotes from Peale also encouraged me: “It’s always too soon to quit” and “To every disadvantage there is an advantage.” I wrote each of those down and kept the notes handy. They fit in well with a saying I had always tried to follow: “When life gives you lemons, make lemonade.” With positive people and messages around me, I had the confidence to make it through this unimaginable life difficulty.

Strength comes in helping someone else. The more I committed to help Charles fulfill his goals, the stronger I felt in my care giving. I guess that was because I had become a partner with him in preserving his legacy, which provided meaning and purpose for this struggle.

It’s difficult dealing with the very long good-bye that is part of a neurodegenerative disease. While I didn’t hear her say this, I understand that Nancy Reagan used these words to describe living with Ronald Reagan’s Alzheimer’s disease. While I chose to be optimistic and tried to make the best out of our situation, I had nonetheless been losing my beloved Charles bit by bit. And that was still very difficult and painful.

Assisted suicide is probably not necessary. Earlier in Charles’s disease, I had pondered whether assisted suicide might actually be a humane way for Charles to end his life, if living it was too difficult for him. If he was no longer contributing to life — and was just existing — why shouldn’t we be allowed to do it? But I had learned that for Charles, even though he couldn’t talk, he was still making an impact in other’s lives. Even the hospice staff and volunteers, who never heard him speak, commented on the powerful influence he quietly had on their lives. And because he didn’t show that he was in too much pain, allowing nature to take its course seemed to be the right thing for us.

Be more upfront. I wish I could have dealt earlier with certain issues that arose with Charles, such as his driving, retirement, and getting a wheelchair. I felt that he needed to be emotionally ready to address some of these things. However, in some instances, I might have waited longer than I really should have. I could get the gumption to deal with potentially contentious issues only if I psyched myself up first. But even then, these issues took me out of my comfort zone. I watched for the appropriate opportunity and pounced on it when it came, but I wish I could have been more proactive.

Life isn’t fair. That was just the way it was. By accepting that life isn’t fair, I was usually able to stay clear of the anger and frustration that can paralyze caregivers. My brother explained to me once that the Chinese symbol for crisis is danger plus opportunity. The danger just happened — Charles had a degenerative disease. Even though it was unfair, this tragic opportunity allowed me to live more deeply and passionately.

eMedicine on feeding tubes + some personal info

This will only be of interest to those dealing with dysphagia (swallowing problems) and who are open to the idea of a feeding tube.

Personally, I never understood what the big deal was about getting a feeding tube during the time period when quality of life is still good.  When my Dad (with progressive supranuclear palsy) stopped eating and drinking over a week ago (he reported that it was too fatiguing to chew and swallow, the swallow was delayed by 5-15 minutes, and quite a bit of chewed food was spat out because he couldn’t perform the swallow), I started mentioning to a few people that I was looking into the ins-and-outs of a feeding tube.  Many of the people not involved in healthcare took it to mean that he was at the end of life.  I guess that’s why they got so upset talking to me and wanting to know if I was OK and if we were ready for hospice.  So I’m not quite sure how to bring up the topic anymore.  Basically, I view the feeding tube in the same way I view the walker or wheelchair — it makes life a little safer.  He said he wanted it.  And if I were he I would want it as he still has pretty good quality of life.

Anyway, I can report to you today that my Dad had surgery this morning (with Versed, a sedative, and fentenyl, an analgesic, both given via IV).  (They initially said they’d be using the intravenous anesthetic propofol.  I said “what about the 1/23/07 issue of Biochemistry which indicated that propofol leads to amyloidbeta peptide aggregation in the brain?”  The MD said “amyloid-beta aggregation is not an issue in PSP.”)  A G-J tube was placed.  Endoscopy (a procedure using a probe with a camera on the end) was not used.  Because most people getting a feeding tube have an NG (nasal gastric) feeding tube in place — it goes through one of the nostrils down to the stomach — and they were unsuccessful in placing such a tube in Dad on Monday, the prep time for the surgery was longer than normal.  In total it was supposed to take 2 hours; it took 3.  The procedure was done by an interventional radiologist.  Normally, the NG tube is used to insert a dye so that the colon is highlighted so it won’t get hit.  They, instead, inserted a tube into Dad’s rectum and injected the dye that way.  Then they inserted a tube down his esophagus in order to blow air into the stomach so that they could “see” the stomach from outside the body.  They had lots of trouble inserting that tube.  So much so that the MD asked me later why we were worried about acid reflux and aspiration.  She was thinking that if it’s so hard to get things down the esophagus, it must be hard for things to come back up.  I mentioned that Dad was at risk for aspiration, based on the modified barium swallow study.  After telling her that, she agreed that the G-J tube was better than the G-tube for Dad.  (It would’ve been better to have had that conversation beforehand but no harm done.)  There is one small tube going into Dad’s body.  Inside, the tube splits — one part goes off to the G (which stands for “gastric” and refers to the stomach) and one part goes off to the J (which stands for “jejunum” and refers to the intestine).  This small tube comes out of Dad’s body for about 7 inches.  (It’s long!)  At the end of it is a rather large and firm set of three tubes or ports; there’s a G port, J port, and a Bal port (don’t know what that one’s for yet).  All of the feeding, hydration, and medication will occur via the J port.  I’m not really sure why there’s a G port.  Perhaps as a back-up or something.  Right now, stomach bile is draining out of the G port.  This is supposed to end at some point (days? weeks?).  The idea is that if you can get the liquid further down into the gastrointestinal system, there’s less chance it will back up into the esophagus and therefore less risk of aspiration.  The MD said that if there were no risk of aspiration a G tube would be better as the stomach is the best place for the body to receive nutrition and digest it.  The MD gave me one tip, which I thought I’d pass on:  if the G-J tube gets loose, insert a Foley catheter into the tube, inflate the balloon, and get to an ER soon.  The catheter will keep the hole open; if there’s not something there keeping the hole open, it will start to close up.  (Note to self: buy an extra Foley catheter and syringe to inflate balloon.)

I’m still learning about the feeding process so I don’t want to say too much about that.  Our plan is to feed him over a 12-hour period while he’s in bed at night.  (One bummer is that he’ll have to sleep with the head of the bed at a 30-45 degree angle to avoid reflux.)  We are very lucky that one of Dad’s feeders has a daughter who has been fed via NG tubes and PEG tubes, so she’s way ahead of us in terms of knowing how to handle all of this.  I have some concerns about finding a feeder who can come start the 12-hour feed around 8pm.  And I want to try to find a belt or cover so that I can protect the tube and ports as everyone says they can be accidently ripped out.  When I learn more, I’ll pass it on.

I haven’t had much access to the internet over the last few days, so I’ve relied on the rather poor info that’s been given to me about PEGs and G tubes by the hospital (in Salt Lake City).  Tonight, after the fact, I’ve gone to, which is one of my favorite sources.  They do cover the topic of feeding tubes, and the G-J tube (picture 8 looks a little short and small to me).  I thought I’d pass on the link to that:

Percutaneous Gastrostomy and Jejunostomy
Last Updated: March 26, 2003

Boston Globe article- anesthesia, delirium+dementia

There is an article in today’s (2/12/07) edition of The Boston Globe newspaper about the danger of hospital stays for the elderly and those with dementia. Here’s the article in a nutshell: “Doctors used to believe that delirium was a short-lived problem for older, hospitalized patients. But research now suggests that delirium — a sudden, serious mental confusion — can linger for months and can increase the likelihood of more serious mental decline, including dementia… Patients with dementia are at least five times more likely to experience delirium while hospitalized than patients with sound minds.”

Also, the article draws attention to the anesthetic isoflurane. This inhaled anesthetic was mentioned in the article on anesthesia and AD (circulated this UK newspaper article to the group on 1/27/07).

Here’s a link and copy of the full article: … ?page=full

An end’s beginning
More than half of all elderly hospitalized patients suffer severe confusion. Many ultimately decline into dementia. Are there common triggers to both?

By Alice Dembner, Globe Staff
The Boston Globe
February 12, 2007

“I’m dead. Are you dead, too?”

Larry Carsman’s mother had always been solidly grounded. But four years ago, as she emerged groggily from surgery, she blurted out those chilling words.

Her delirium — likely from some combination of the surgery, anesthesia, and painkillers — lifted within a day, he said. But his mother, then 81, began a slide into dementia.

“The assumption was that she would come out of it,” said Carsman, of Wellesley. “But she never really did.”

Before, she was sharp enough to drive 25 miles a day to a part-time job and care for herself. After, she forgot to buy food. She couldn’t keep track of her medications. Bills went unpaid. She lost her job. And within a few months, the family moved her to supported housing and later, assisted living.

Her deterioration provides a stark example of the new connections doctors are drawing between two illnesses that wreak havoc on millions of older patients.

Doctors used to believe that delirium was a short-lived problem for older, hospitalized patients. But research now suggests that delirium — a sudden, serious mental confusion — can linger for months and can increase the likelihood of more serious mental decline, including dementia.

And the harmful effects may go both ways. Patients with dementia are at least five times more likely to experience delirium while hospitalized than patients with sound minds, according to Dr. Sharon Inouye , director of the Aging Brain Center at Hebrew SeniorLife, based in Boston.

The connection between these illnesses is still a mystery. But new studies suggest a genetic link and a possible tie-in with the most commonly used general anesthesia agent. If the connection can be solidly established, researchers say it could provide a new way to fight dementia.

“If we could prevent delirium — and we know we can — then we might prevent dementia from developing or getting worse” in many cases, said Inouye, who is leading a group of local scientists examining the connections.

Delirium causes severe confusion that is often accompanied by hallucinations and agitation but may also bring withdrawal or extreme sleepiness. Research shows that delirium affects more than half of all elderly patients who are hospitalized or undergo surgery. It is also extremely common in patients of all ages treated in intensive care units. Studies show delirium itself can lengthen hospitalization and hasten death.

For many patients, the delirium is caused by a combination of factors including medical and surgical procedures, infections, medications, malnutrition, immobility, noise, and sleep disruption. For the sickest, it can be triggered by something as simple as one sleeping pill, Inouye said.

Several studies have found a connection with dementia, a range of conditions including Alzheimer’s that — over many years — destroys memory, organized thinking, and eventually everyday functioning. One particularly striking study found that 60 percent of hospitalized patients with delirium were diagnosed with dementia over the next three years, compared with 18 percent of those without, according to a review of the research by James C. Jackson, a neuropsychologist at Vanderbilt University in Nashville.

“It’s a very big public health problem flying under the radar screen,” he said.

A paper by Jackson and colleagues, published last month in Critical Care Medicine , found the first genetic link between the two brain disorders. In a small group of ICU patients, those with a genetic variation called APOE4 were more likely to have longer-lasting delirium. APOE4 also increases the risk of getting Alzheimer’s disease.

“We’re beginning to think that genetic factors may predispose people to delirium,” Jackson said. “Those could be the same factors that predispose them to dementia.”

Inouye helped convene a symposium last year to look for connections between delirium and dementia and coordinated publication of a group of research papers last month in the Journal of Gerontology: Medical Sciences .

One of those papers studied the effect of isoflurane, the drug most commonly used to induce general anesthesia. Because of the high rate of post operative delirium, earlier research suggested that anesthesia might be a risk factor, but the evidence is not conclusive.

When isoflurane was “given” to cultured brain cells in the lab, it triggered the death of some cells. That, in turn, caused a build up of a protein called beta-amyloid that crowds the brains of people with Alzheimer’s. The anesthetic also increased the harmful clumping of beta-amyloid and that accumulation caused more cell death.

“Isoflurane can cause the pathology underlying dementia,” said Dr. Zhongcong Xie , an anesthesiologist at Massachusetts General Hospital who led the research, which was also published last week in the Journal of Neuroscience . “It can also cause a delirium. We suggest that they share a similar pathology — one agent causes both, but one illness happens quickly, and one happens over a long time.”

Xie, assistant professor of anesthesia at Harvard Medical School, called the finding “alarming” but warned against panic because of the long history of safe use of isoflurane and because results in cells don’t always hold up in real people. Xie and colleagues have begun testing the effects of isoflurane in mice and in people.

“It’s too early to take isoflurane out of the operating room,” said Rudy Tanzi , director of genetics and aging research at Mass. General and a co-author of the paper. “And for healthy people, it may not be a problem.”

However, Tanzi said he asked doctors to give his elderly mother another anesthetic instead of isoflurane when she had knee replacement surgery last summer. In the past, after surgeries, his mother was often delirious for days, he said. This time, she woke up and asked whether the Red Sox were on television. “I’ve got to see my Big Papi,” she told Tanzi.

Larry Carsman said no one focused on anesthesia as a possible cause of his mother’s delirium. Instead, they looked to the painkiller Demerol , which he said had made her delirious in the past and was given to her by hospital doctors unaware of that history.

Before the delirium, Carsman’s mother was occasionally forgetful, but showed no signs of dementia, he said. Highly educated with a doctorate in gerontology, she even directed her own medical care. Yet, a year after the delirium, she was diagnosed with dementia.

“I would love for my mother’s dementia not to have gotten this big shot” in the arm from the delirium, he said. “She was so independent. Had she not taken this downturn, she could have stayed in her house longer.”

Alice Dembner can be reached at [email protected].

© Copyright 2007 Globe Newspaper Company.

Problem of delirium with hospital stays (Boston Globe, 2-12-07)

There is an article in today’s (2/12/07) edition of The Boston Globe newspaper ( about the danger of hospital stays for the elderly and those with dementia.

Here’s the article in a nutshell:

“Doctors used to believe that delirium was a short-lived problem for older, hospitalized patients. But research now suggests that delirium — a sudden, serious mental confusion — can linger for months and can increase the likelihood of more serious mental decline, including dementia…  Patients with dementia are at least five times more likely to experience delirium while hospitalized than patients with sound minds.”

Also, the article draws attention to the anesthetic isoflurane. This inhaled anesthetic was mentioned in the article on anesthesia and Alzheimer’s that I circulated earlier this year.

Here’s a link to the article:

An end’s beginning
More than half of all elderly hospitalized patients suffer severe confusion. Many ultimately decline into dementia. Are there common triggers to both?
By Alice Dembner, Globe Staff
The Boston Globe
February 12, 2007

Rather alarming reading!



Dementia with Lewy Bodies – eMedicine overview

Here’s a link to the overview on Dementia with Lewy Bodies (DLB):

It was last updated on July 5, 2005.

I think these eMedicine articles are great.  They can definitely be challenging reading given the use of medical terminology.  But is often the first place I go for comprehensive info on all aspects of various disorders, including DLB.

Understanding Behavioral Changes in Dementia

This post will be of interest to those dealing with dementia-related behavior, such as wandering and aggression.

Besides wandering and aggression, this article, “Understanding Behavioral Changes in Dementia,” also discusses sundowning, exercise, and finding caregivers.  The authors give tips for managing behavioral changes, using routines, communicating, moving someone with dementia to a new home, and caring for yourself (the caregiver).

The article was written by Tanis Ferman, PhD.  Dr. Ferman, a clinical neuropsychologist at Mayo Jacksonville, is on the LBDA Scientific Advisory Council.

You can find this terrific article online at:

“Drugs for agitation: to use or not to use” (Alz Assoc Article)

This will be of interest to those dealing with agitation.

This article, “Drugs for agitation: To use or not to use?,” appeared in several local versions of the Alzheimer’s Association enewsletter – Winter ’07 issue. It reports on a study published in the New England Journal of Medicine on 10/12/06. I’ll send out a link soon to a news article about the study.

Here’s the link to the full newsletter: (drugs for agitation article is on page 7)

The full article is copied below.


Drugs for agitation: To use or not to use?
Alzheimer’s Association Newsletter
Winter 2007

News media have reported that some drugs used
to treat agitation, aggression and psychosis were
only about 30 percent effective and had one or
more serious side effects according to a federally
funded study published in The New England
Journal of Medicine, October 12, 2006.

Background. As dementia progresses, many people (not all)
become agitated, aggressive, or delusional, causing distress
to both patient and caregiver. The Alzheimer’s Association
recommends that non-drug interventions be tried before

When other interventions are ineffective, physicians
prescribe various medications, including Zyprexa, Risperdal
and Seroquel, those investigated in the New England
Journal of Medicine study. These drugs were designed to
treat psychiatric conditions.

The Food and Drug Administration (FDA) labels state that
these medications are not approved for the treatment of
dementia-related psychosis, with a “black-box” warning:
“Elderly patients with dementia-related psychosis treated
with atypical antipsychotic drugs are at an increased risk of
death compared to placebo.”

What is new?
In the editorial accompanying The New England Journal
of Medicine article, Dr. Jason Karlawish states that there is
still a role for these drugs. He points out that they can do
some good for some patients, but they also have some risk
attached – as is the case with almost all medications.

William H. Thies, PhD, Alzheimer’s Association vice
president of medical and scientific relations, adds, “The
decision to use them needs to be thoughtfully considered,
closely monitored and carefully tailored to the situation.”
Close monitoring calls for a working partnership between
caregiver and doctor.

What has not changed?
For sudden increases in agitation or confusion, call your
doctor as soon as possible. These changes may be caused by
physical conditions such as infections, small strokes, head
trauma, pain, or constipation, or by medication side-effects
or interactions.

If the agitation seems to be a worsening of the dementia
itself, try non-drug interventions first. While it is very
difficult for a lone, overtaxed caregiver to manage a highly
anxious patient, the following basic rules are helpful:

* Prevention! Those with dementia are often calmed by
familiar routines, places and faces.

* Identify the triggers. If the person gets agitated in a
confusing situation, take him or her to a quiet place.

* Back off! When the person resists your help, try again at a
calmer time.

* Don’t argue. Respond to someone with delusions (false
beliefs) by showing mild interest, then distracting the person by
introducing activities he or she enjoys.

* Call your allies. A family member or friend can often
change the person’s attention from the focus of anxiety.

* Call us. The Alzheimer’s Association’s Helpline (800-272-
3900) is ready 24/7 to help you resolve difficult problems.

* Protect yourself. If you feel that you are in danger, leave the
room and call 911, or someone who can come immediately.

The study, with some comments, may be read at

From the Alzheimer’s Association 24/7 Helpline (800-272-
3900) you can request:

Fact Sheets:
Behavioral and psychiatric Alzheimer’s symptoms”;
“The Use of Medications,” by Gary Steinke, MD;

and the Alzheimer’s Association brochure,
“Behaviors: what causes dementia-related behavior
like aggression and how to respond.”

“Physician’s Guide to PSP” (Mentions of CBD and MSA)

This video guide to medical professionals for diagnosing progressive supranuclear palsy (PSP) is well worth watching.  Note that multiple system atrophy (MSA) is mentioned (around 12:30) as well as corticobasal degeneration (CBD) (around 12:40) along with a description of alien limb syndrome.

This 18-minute diagnostic video, “A Physician’s Guide to PSP,” was announced a few months ago by CurePSP, the new name for the Society of PSP.  You can order the video on a DVD but it’s easier to find it online here:

[Editor’s note:  the above link was updated in 2012 when CurePSP moved video off its website on to YouTube.]

I found the program understandable to a layperson.

Dr. John Steele, who was one of the MDs who defined the disease PSP, is the first speaker.  There’s some interesting video of supranuclear gaze palsy.  I guess so much time is spent on this because downward gaze palsy is a hallmark symptom.  You probably don’t need a dictionary because the terms used (eg, apraxia, spastic) are described in video form.

Dr. David Williams is the second speaker.  He is one of the leading stars of PSP research and practices in Melbourne, Australia.  (He used to work with Dr. Andrew Lees in the UK.)  He talks about brain structures affected by PSP and the neuropathology of PSP.  (Don’t worry – this doesn’t last long!)

After Dr. Williams, we hear the voice of Dr. John Steele who says:

  • “A population of 100,000 could contain 1-2 diagnosed PSP cases and 4-5 undiagnosed”
  • “This is about 5% of the prevalence of Parkinson’s Disease”
  • “The average survival in PSP is 6-8 years after symptom onset”
  • “This is about 2 years less than for Parkinson’s Disease before the L-dopa era”

Dr. Lawrence Golbe is the third speaker.  He indicates that the facial expression, gait, and speech of PSP are unusual.  He says that the speech of PSPers (spastic and ataxic) is distinctive and occurs “in almost no other condition.”  He says that one of the diagnostic criteria for PSP is falls occurring within the first year.  (I’m going to have to look up again what other neurologists say about that.  My dad did have falls this early but I didn’t think everyone did.)  He always orders a brain MRI.  He sometimes orders a SPECT.

The fourth speaker, Dr. Andrew Lees, notes that the arm swing is often preserved in PSPers.  This is unusual and dissimilar from Parkinson’s Disease (PD). He talks about blepharospasm.  He says that eye movements form an important part of the neurological exam.  An eye exam is shown.

Dr. Lees notes that as part of taking a patient’s history, it’s important to ask about previous history of encephalitis.  History of visual hallucinations, psychosis, and memory loss would indicate the patient may have Dementia with Lewy Bodies.  As part of the physical exam, it’s important to exclude autonomic dysfunction.  Symptoms of autonomic dysfunction are more commonly associated with PD and MSA.  Dr. Lees says that CBD should be considered if there is marked asymmetry of symptoms (such as jerky, tremulous movements in one limb) or alien limb.

The video is also intended for families.  It was produced by CurePSP and the PSP Society of Europe, hence the combination of US and UK researchers.

Here’s a description of the video from the CurePSP website:

“NEW!  A Physician’s Guide to PSP – Diagnostic DVD – An important resource for neurologists, family physicians, and medical professionals created by the PSP Europe Association in the United Kingdom and CurePSP in the United States.  This 18 minutes long video features commentary by top neurologists specializing in PSP, including Lawrence I. Golbe, MD, John C. Steele, MD, and Andrew Lees.”