Category Archives: Caregiving – General

“Instead of Saying X, Trying Saying Y”

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This is a nice article with a helpful chart on using techniques of validation and redirection to deal with memory loss, repetitive questions, delusions or aggressive behaviors, when speaking with those with dementia.

This article is from care ADvantage, a free publication of the Alzheimer’s Foundation of America (alzfdn.org) for caregivers of people with AD and similar illnesses.
(Reprinted with permission from the Fall 2009 issue of care ADvantage magazine, a publication of the Alzheimer’s Foundation of America. For a free subscription, please visit www.afacareadvantage.org or call 866-232-8484.)

http://www.afacareadvantage.org/issues/ca_fall09.pdf –> article starts on page 9

Instead of Saying X, Try Saying Y
Use Validation and Redirection to Manage Daily Challenges
by Susan London, LMSW, QDCP
care ADvantage, Fall 2009

Let’s face it: caring for an individual with Alzheimer’s disease isn’t always a walk in the park; in fact, it can be downright stressful. Between memory loss, repetitive questions, false thinking or aggressive behaviors, each day often brings new challenges.

As a caregiver, your understanding of the disease as well as your attitude about the illness can have a great impact on the way you manage day-to-day caregiving responsibilities. And just because this illness has taken over someone close to you, it doesn’t mean you should let it conquer you as well. So what do you do when your loved one blames you for something you didn’t do or becomes paranoid that you are plotting against him or her? How about when someone sees objects that aren’t there or says things that simply don’t
make any sense?

If your gut reaction is to try to orient the person back to reality, you’re not alone. Many caregivers spend endless hours trying to prove who they are, where they are and what they are doing, but to no avail. They believe if they would just show a wedding album or have other family members confirm information that the person with Alzheimer’s disease will catch on and it will “click” for them. Even though a caregiver’s heart is in the right place, these efforts are often fruitless. Their loved ones may continue to press the issue, and sometimes even get angry or hostile at the “evidence” presented to them.

Fortunately, there are ways to manage daily challenges in order to minimize a caregiver’s stressful feelings and improve the odds that an individual with dementia will respond positively.

One of the best approaches to use with people with dementia is Validation—a technique that confirms their right to feel a certain way and express their emotions regardless of the situation. The Validation theory, developed by Naomi Feil, suggests that an individual
could be revisiting past events or trying to solve unfinished business. This helps explain why some people feel the need to go to work years after they retire or pay off a debt from decades ago. By validating their experience, you are meeting them where they are and sending a message that you still accept them no matter what. Another powerful approach to utilize is redirection—a behavioral intervention that shifts the individual’s focus, by distracting the person or moving away from an undesired topic or behavior to something more pleasant. See the chart on the following pages for some role-playing ideas that tap basic validation and redirection techniques to handle some of the most difficult situations.

When
Your mother says, “I want to go home!”

Instead of Saying
“This is your home! Don’t you remember? You’ve only lived here for 30 years!”

Try Saying
“Of course you want to go home! Your house was the prettiest on the block. Why don’t you tell me about those tulips you planted in your front yard?”

Why?
Memory impairments and disorientation can cause people to forget where they are. When they want to go “home,” it really signals a desire for a sense of safety and familiarity. Bring mom “home” by reuniting her with her favorite memories of what home represents.

When
Your wife says, “Get away from me, you’re not my husband!”

Instead of Saying
“But I am your husband! Look at our matching wedding rings. You know, you really upset me when you don’t remember who I am.”

Try Saying
“You must love your husband very much. I can tell by the way you talk about him. Why don’t you tell me about your wedding day?”

Why?
Memory loss can cause individuals to forget even their closest loved ones. When your wife becomes agitated, respect her space,
validate the love she feels for her spouse, and allow her to talk about “him” while you are sitting right beside her. Even though she may
have forgotten you today, hearing her talk about you will demonstrate that you are still very close to her heart.

When
During meals, your father refuses to eat and says, “You’re trying to poison me.”

Instead of Saying
“That’s ridiculous! Why would I ever do such a thing? Eat your meal and stop making up crazy stories!”

Try Saying
“Dad, I understand if you are feeling afraid, but I want you to know that I would never let anything bad happen to you. You are safe with me. By the way, this meatloaf is delicious. I am having a big plate of it myself. Let’s have some together and you can tell me all about
the fishing trip.”

Why?
It is difficult, if not impossible, to rationalize with people with dementia. Instead of trying to orient Dad back to reality, instill a sense of safety, and demonstrate it by eating the same meal as him or taking a bite from his plate. Once you’ve established trust, you can quickly refocus him by shifting the conversation to something more pleasant, such as a fun day he had by the docks.

When
Your sister says, “You stole my money! Give it back!”

Instead of Saying
“I’m sick and tired of you accusing me every time you hide your money. You stuffed it in your drawer five minutes ago. I saw you do it, so stop blaming me.”

Try Saying
“Oh no, your money is missing? I can see why you’re upset. Well, don’t you worry because I am going to help you look for it.”

Why?
It is common for people with dementia to hide items and forget where they are moments later. Since it can be embarrassing to admit this, individuals sometimes accuse others to take the focus off themselves. Rather than trying to deflect blame, simply let your sister know that you understand how she feels and that you want to help her resolve the situation. Then walk her over to the drawer and ask her to open it. When your sister finds her money, allow her to take pride in finding it all by herself.

When
Your grandmother says, “I have to leave now. I need to pick up Jimmy from school.”

Instead of Saying
“Grandma, Jimmy is a grown man. He’s 60 years old. You’re not going anywhere.”

Try Saying
“Oh Grandma, you have always been such a loving mother to Jimmy. Why don’t you come with me to get a drink of water and tell me all about what you love to do with Jimmy after school?”

Why?
People with Alzheimer’s disease often live in the past by re-creating experiences that happened long ago. Despite the fact that Grandma hasn’t picked Jimmy up from school in decades, her maternal instinct is still very strong, and she feels an urgency to follow the same routine she did while he was growing up. Take this as an opportunity to reunite your grandmother with those happy memories: while you are distracting her from going to the front door, she will tell you all about those wonderful times she had with Jimmy and will forget all about wanting to leave.

When
Your uncle believes he’s still at work. He treats you like an employee and tells you he needs the paperwork finished by the end of the hour.

Instead of Saying
“Are you starting with that nonsense again? You retired in 1985. How many times do I have to keep reminding you?”

Try Saying
“You really run a tight ship around here! I guess that’s what makes you such a good boss. I’ll make sure to get the paperwork to you, but I could use a little help. Can you assist me with one of the documents?”

Why?
It is not uncommon for people with Alzheimer’s disease to strongly affiliate with important roles they have taken on in the past. The fact that your uncle thinks he’s at work suggests that a job is still very meaningful to him. Use this moment to create an activity that can contribute to a sense of purpose. Bring him a phone bill or other document and allow him to “help” you interpret it. Support his efforts and remind him what a great boss he has always been.

SUSAN LONDON, LMSW,QDCP, is a social worker and project coordinator at the Alzheimer’s Foundation of America (AFA). As a member of AFA’s social services team, she regularly responds to calls and e-mails from caregivers across the country, walking them through both daily challenges and crisis situations.

Caregiving with Love through Neurodegenerative Disease – Webinar Notes

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Today, CurePSP (psp.org) hosted a webinar on caregiving with Janet Edmunson. It was titled “Caregiving with Love through a Neurodegenerative Disease.”

The presenter was Janet Edmunson.  Janet’s book is called “Finding Meaning with Charles” and is about her caregiving experience for her husband Charles.  Her website — findingmeaningwithcharles.com — is worth checking out.  She visited the Bay Area a year ago, and met with some of our support group members and at various other events.

These are the notes I took during the webinar.
The notes are divided into these sections:

* Intro/Timeline – this is of general interest as it’s short

* Symptoms – these are likely of most interest to those dealing with PSP and CBD but those dealing with MSA may find some relevance

* Affirmations – these are of general interest to those dealing with PSP, CBD, MSA, and LBD

* Questions and Answers –  these are likely of most interest to those dealing with PSP and CBD but those dealing with MSA may find some relevance.  (There was one question on LBD.)

* CurePSP+ Overview – this will only be of interest to those dealing with PSP, CBD, and perhaps MSA

Robin

—————————–

Robin’s Note on

Webinar Presenter – Janet Edmunson
Chair of the Board, CurePSP
Author of “Finding Meaning with Charles”

INTRO/TIMELINE

Her late husband Charles developed his own mission statement and read it every day:  “I will make a significant different in the world by bringing grace with integrity into the lives of others.  Therefore, through a disciplined focus, I will apply my life to bringing peace for people who are in turmoil…”

Charles wrote a book called “Paradoxes of Leadership” in the last years of his life.

Charles developed had his first symptoms in 1995 at the age of 45.  First symptoms are trouble with stairs.

1997 they saw Dr. Litvan at NIH.  She suggested CBD.

1998 they saw a group of MDS at Boston Teaching Hospital.  Diagnosis was PSP.

2000:  Charles fought brain disorder for 5 years.  Upon autopsy, it was confirmed that he CBD.

SYMPTOMS

Symptom:  eye movement problems
No peripheral vision or depth perception
Syncopated, double vision, no focus
Problem driving (didn’t know where he was in space)
Reading problems (tracking)

Symptom:  fine motor movements
Buttoning buttons, tying ties
Writing (squiggly and small)
Typing
These are called “cortico-sensory problems.”  They are classic symptoms for CBD.

Symptom:  rigidity and unsteady gait
Extremely stiff  (brain caused frozen back muscles to contract at same time)
Neck hyper-extended
Lost ability to run
Lost ability to walk, eventually

Symptom:  not many falls
Falls when jogging
This is a bit different with PSP where falls can be frequent

Other symptoms:
Impulsivity
Stiff, unsteady gait
Out of bed
Symptoms started out one-sided  (typical with CBD)
Apraxia – couldn’t do purposeful movements, such as clapping hands
Essential tremor – especially when reaching
Alien limb – foot didn’t feel connected to body and arm would float up  (typical with CBD)
Bladder incontinence started early on.  Charles might’ve gotten to the restroom in time but couldn’t get his trousers down in time.

Symptom:  speech
Slowed
Quiet
Slurred, jumbled, though Charles didn’t think it was slurred
Just gave up

Symptom:  swallowing
Straws, sippy cups
Thickening liquids
Pills in pudding and apple sauce
Chopped food into small pieces
He’d “pass out” while chewing.  After awhile, he’d start chewing again.  Happened frequently.  Seizures?
Based on a swallow study, some of the food was being pocketed.  They would tell Charles to swallow a second time.
She recommends a swallow test

Symptoms:  cognitive
Word find
Slowed thought-processing  (this requires patience from caregivers)
Perseveration, where Charles would put the same word (“process”) in every sentence.  (To resolve this, they would have to get Charles off track.)
Yes/No backwards
Math

Symptoms:  behavioral
Depression.  No antidepressants helped.  Finally, an atypical antipsychotic called Seroquel helped with the depression and sleep issues.
Sleep issues.  Charles would wake up every hour!
Obsessions with time and Beatles music
Inappropriate behaviors

Symptoms:  ADLs
Toileting.  Charles sat for 30 minutes on the toilet.
Constipation.  Lactulose and a suppository helped.
Showering.  She recommends a shower chair with a sliding seat.
Washing and combing hair
Brush teeth.  Very hard because Charles would clamp down on the tooth brush.  They got a bite block from the dentist.
Eating.  Charles wanted to eat on his own.  It was a mess with food everywhere.  He eventually had to accept help.
Transfers from the bed, to a recliner, and to a wheelchair.  They were taught how to do transfers by an OT.  They used a Hoyer lift later on (with hospice).

What could’ve caused this?  We don’t know.
Family history?  Dad had PD, Mom had AD.
Chemical exposure?
Heart disease or treatments?
Very low-fat diet?  (You need fat for your brain function.)
Diet sodas that used sacchrine?
Gum disease?
Tick bites?  Charles was never tested for Lyme Disease.
Sleep issues?  Charles had sleep apnea.
Mobile phone use?
Virus?

She encourages those with PSP (who can still talk or communicate) to enroll in Dr. Litvan’s PSP study.  See pspstudy.com.

AFFIRMATIONS

“When life kicks you, let it kick you forward.”  (Message from someone with breast cancer.)

Affirmations:  positive messages; uplift; inspire

Caregiving Affirmation #1:  hold on to your passions because they are the essence of who you are
Examples:  hobbies, being with friends, genealogy

Caregiving Affirmation #2:  I can make it through the difficult transitions of this disease
First hard transition for Charles was not driving
Another hard transition for Charles was not walking and using a wheelchair
Another hard transition for Charles was accepting an aide

She suggests that family members allow others to help:  don’t try to do all the caregiving yourselves!
Make a list of tasks that you’d like to have done.  Whenever someone says “is there anything I can do for you?,” take out the list and say “can you do this?”
See caringbridge.org to allow family and friends to help

Caregiving Affirmation #3:  explore life’s adventures together to store up fond memories that will sustain you
Example:  celebrate your anniversary every month
Example:  dinner with friends at your house, with Subway sandwiches, paper plates, and paper cups

Caregiving Affirmation #4:  I will give myself credit for staying strong despite being pushed to my limits

Caregiving Affirmation #5:  I will give myself grace when I occasionally blow it

Caregiving Affirmation #6:  I will expect that some people will find it difficult to visit my loved one.  That’s OK — it doesn’t mean that they’ve stopped caring.
Consider encouraging visitors to come over in pairs so that they can talk and your loved one can listen in

Caregiving Affirmation #7:  I will remember that the difficult personality changes are not my loved one — they are the disease

Caregiving Affirmation #8:  I will consider hospice sooner versus later; the support will bring me relief

Caregiving Affirmation #9:  It’s perfectly normal to grieve even before my loved one dies
You grieve with each loss.
Janet bought a grief book even before her husband Charles died.

Caregiving Affirmation #10:  Look for the gifts that only this type of tragedy can afford
Caregivers can gain patience
Caregivers can make new friends at support groups
One gift – the ability to say “goodbye”

Last thought from Charles’s boss:  “May this [disease] make you better, not bitter.”

QUESTIONS AND ANSWERS  (answers are by Janet Edmunson, unless indicated)

Q:  Why does it take so long to get a diagnosis?

A:  To get it right, probably isn’t as important as we think it is.  For the person with the disease, getting a diagnosis is very important.

It takes time for enough symptoms to appear so that a diagnosis can be made.

Many people start with a primary care physician, who has probably never seen another person with these diseases.  Even many neurologists haven’t seen people with this disorder!

Get a DVD from CurePSP to give to your MD!  [You can find it here:  https://www.psp.org/forms/reqmater.php]

Q:  Where can I find an online group of caregivers?

A:  There’s the PSP Forum at forum.psp.org.

There are a few Yahoo!Groups available:  ShyDrager, PSPinformation, cbgd_support.  Look in the health section on Yahoo!Groups.

[Robin’s note:  There are four Yahoo!Groups that deal with MSA:

“ShyDrager” –
http://health.groups.yahoo.com/group/shydrager/

“Multiple System Atrophy” –
http://health.groups.yahoo.com/group/multiplesystematrophy/join

“idcircle” –
http://health.groups.yahoo.com/group/idcircle/join

“ChristianMSAGroup” –
http://health.groups.yahoo.com/group/christianMSAgroup/join ]

Q:  How did you remain so positive?  I don’t think it is reasonable that someone can remain as upbeat as you did during your caring for Charles.

A:  Part of it is Janet’s optimistic nature.  What’s the alternative?  See “Learned Optimism” by Martin Seligman.  He says that optimism energizes.

Q:  What did the brain autopsy show?

A:  The pathologist said that the diagnosis was hard for her to finalize.  It looked like both PSP and CBD, but more like CBD.  Charles also said hardening of the blood vessels in the brain.

See info on brain donation here:  http://psp.org/page/braindonation

Talk about brain donation now!  Be sure that all the paperwork is handled about 2 months before your loved one dies.

CurePSP pays for most of the charges associated with brain donation.  Families often have to pay a local pathologist for the extraction.  CurePSP can reimburse families for part of these costs.  [Robin’s note:  this reimbursement is available to PSP, CBD, and MSA families only.]

A by John Burhoe (CurePSP Outreach Committee Chair):  Lou’s brain was donated.  Hospice did a lot of groundwork on the brain donation arrangements.

Q:  How did you balance working fulltime and caring for Charles?

A:  Janet had a team of aides.  Because she couldn’t afford 7×24 aides, she had some volunteer aides.  Hospice provided some aides.

A by John Burhoe:  John was able to work at home.

Q:  Where can I find the latest information on PSP?

A:  See curepsp.org.  In particular, find the Guide or Guidebook.  This can be downloaded for free or it costs $10.  [See:  https://www.psp.org/forms/reqmater.php]

Also get on the CurePSP newsletter mailing list.  It comes out quarterly.  This will keep you up to date on research.

Tune in to the frequent webinars, organized by Larry Schenker.

Also see shy-drager.org (for MSA), lbda.org (for LBD), ftd-picks.org (for CBD).

Call Vera James with the Shy Drager Support Group (MSA).

Call any of the “communicators” listed.  It doesn’t matter if they are in a different state than the state you live in.

A by John Burhoe:  The website is being updated and will be launched at the end of the year (November) or early next year.  All these webinars will be available on curepsp.org.

All of the support groups are listed by state.  And there are “communicators” as well, listed by state.

Other sources of support:  physical therapy facilities, your church, hospice, friends.

Q:  How do you discuss poor judgments with a parent who is no longer independent but still believes she can take care of herself?

A:  Get the MD involved in explaining to the patient what is needed.

Q:  Can you describe the speech exercises you did with Charles?

A:  Her sister developed the LSVT for PDers.  She instructed Charles to keep saying “aaaaaahhhhh” for as long and as loud as he could.  Also, she instructed Janet to give a word to Charles and then Charles had to come up with a sentence using that word.

She recommends finding LSVT-trained speech therapists for those with PSP, CBD, and MSA.  See:  http://www.lsvtglobal.com/  They also have LOUD training.

A by John Burhoe:  The swallow tests always came out clear though, at home, Lou was always gagging and choking.

Q:  How do we make the journey as easy and dignified as possible?

A:  Keep telling your loved one how much you love them.

Use utensils to let people keep eating with dignity.  Figure out how to use the bathroom with dignity.

A by John Burhoe:  Keep doing things!  He kept taking Lou to church every week.

Q:  Do PSP patients understand what is going on around them?

A:  They may not, but we don’t know.  Treat them as if they do.

A by John Burhoe:  Hell yes.  Lou was right there, all the way through.  Treat them just as you treat everyone else.  Don’t let someone talk about your loved one in the third person (“does she want this?”).

Q:  What are the pros and cons of a feeding tube?

A:  One consideration is how much quality of life is there.  It seems appropriate if it’s very early in the disease course.

Be sure you discuss when the feeding tube should be removed or when tube feedings should be stopped.

A by John Burhoe:  There’s no right or wrong answer.  It’s a very personal decision.  It should be discussed early on so your loved one can be involved in the discussion.

They chose not to have a feeding tube because they were concerned it would extend life, and they were concerned it would be necessary to move Lou outside the home.

Q:  Can you speak about LBD?  It was my understanding that this webinar would be relevant to our situation (my wife has PDD/LBD) but you mostly spoke about PSP and CBD.

A:  The hard part is the dementia element to LBD.  Dementia gives caregiving more of an emotional component than a physical component.

We often confuse dementia with Alzheimer’s Disease.  They are different.

Behavioral things that can happen in LBD can be very disturbing to the caregiver.  Someone with LBD can accuse his/her spouse with having an affair.

Bringing humor to a the situation is so important!  (Husband with LBD:  you have other men in our bed at night!  Wife:  that’s why I got a big bed.]

Do not argue with hallucinations and delusions!

Q:  Can we get a copy of this slide presentation?

A:  Email Janet at [email protected] for a copy of these slides.

Hopefully the CurePSP website will eventually include the recordings of these webinars.

Q:  Can PT help to slow these disorders?

A:  I’m not sure it can slow these disorders.  PT can give quality of life.

A by John Burhoe:  The biggest aspect of PT for Lou was the social interaction.

Q:  Does CurePSP have more information about what my husband with MSA will experience in the coming years?

A:  We are getting more info about MSA onto our website.  The Board just approved including this disorder in its mission.

See shy-drager.org.

A by John Burhoe:  Don’t forget google.com.

Q:  Does anyone have puffy cheeks?  I have PSP.  Puffy cheeks caused me to bite the inside of my mouth.  It affects my speech and chewing.

A:  Don’t know anything about this.

Q:  I have PSP.  Should I try to walk and stay active, even though I fall alot?

A:  We don’t want you to fall!  If you break a bone, this will bring you down a lot.  Let someone hold onto you or use a gait belt around you.  There are techniques you can learn from a PT on how to walk.

It’s important to get a 4-wheeled walker or a very good 3-wheeled walker.  It’s a great idea to get a walker with a basket and seat.  You might consider putting weights on the walker.  You might look at www.wheelchairs.com.

A by John Burhoe:  Put a fold-up wheelchair in the car so you can still get out!

A by Larry Schenker (webinar organizer):  You might consider a brace that comes down from the ceiling while you are on a treadmill.  Consider using a helmet.  Consider swimming.

Q:  My husband signed up for the PSP genetic/environmental risk factor study at Case Western Reserve University in Cleveland.  What other PSP studies are there?

A:  See pspstudy.com

There’s a CoQ10 study at Lahey Clinic.

There’s a lithium study funded by NIH.

You might be able to be seen at NIH for evaluation.

There’s a drug study coming up for NAP.  It is coordinated by Dr. Adam Boxer at UCSF.

Brain donation is an important means of research.  There are over 1000 PSP and CBD brains being looked at now in a genetics study.

Q:  How did John Burhoe travel despite his wife’s incontinence?

A by John Burhoe:  On airplanes, John could lift Lou onto the plane.  They sat next to the toilet.  This was never a problem.

A:  Charles used Dignity pads along with Depends.  This is an extra pad that goes inside the Depends.

Charles used a condom catheter on airplanes.

Q:  How can I get Janet’s book “Finding Meaning with Charles”?

A:  At a bookstore, on findingmeaningwithcharles.com, on Amazon.com, on bn.com.

Q:  Is there a doctor any place in the world that we might be able to visit to get a definitive diagnosis?  My wife’s neurologist can decide between MSA, CBD, or PSP.

A:  See a movement disorder specialist, not just a neurologist.

She recommends seeing Dr. Larry Golbe.  Or:  Dr. Ravi in Boston, Dr. Diana Apetauerova at Lahey Clinic in Boston, Dr. David Riley in Cleveland.

A by John Burhoe:  He found good MDs at Mass General and Scripps.

He recommends seeing someone at a major teaching hospital such as the University of Michigan, Duke, or UCLA.

CUREPSP+ OVERVIEW

CurePSP+ Vision Statement:  cure and prevent PSP, CBD, and related disorders

CurePSP: started in 1990; 30 members initially; now, the organization communicates to over 30K people a year and receives gifts from over 8K donors

Educational Mission:
PSP, CBD, MSA, AGD (Argyrophilic Grain Disease), Pallidal Degeneration

Research Mission:
PSP, CBD, AGD, Lytico-bodig (LyB), Guadelupean Tauopathy (GT)

Outreach and education:
Magazine
Guidebook and other materials
Website (videos, downloadable materials, Forum, resource)
Webinars

Research:  118 research projects since 1997; values at $8.2 million
Genetics Consortium:  funded primarily by Charles D. Peebler, Jr; 13 member scientics from US, UK, and Germany
Major Programs:  Pollin Fund for CBD; Troxel Brain Bank; General Investigator-Initiated Projects

Areas of Research:
tau genetics
non-tau based pathologics
non-tau based genetic studies
anatomic and histopathologic surveys
brain bank

www.curepsp.org
800/457-4777 US
866/457-4777 Canada

NPR Story on Delirium (from Hospitalization)

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There’s a 5-minute NPR story today on delirium.  Apparently 2 million seniors a year (or about one-third) who go into the hospital are affected by delirium.

Here’s an enlightening excerpt:

“My father wound up getting delirious even when I was there at his bedside,” [Dr. Sharon Inouye, a geriatrician] says. “I’m an expert in delirium, and I couldn’t prevent it from happening.”

Dr. Inouye attributes it to hospital care that has become complex and fragmented:

“There were just so many physicians taking care of my father, so many medications,” Inouye says. “It was really hard for me to keep track of everything. You know, I knew there were certain medications he couldn’t tolerate, and I told one group of physicians, and then another group of physicians would prescribe it. And so it really just was quite eye-opening for me.”

If one of the world’s leading researchers on delirium couldn’t protect her own father, the average American might feel helpless, too.

Here’s the link and most of the story (the introduction isn’t available in text form).

Robin

—————

www.npr.org/templates/story/story.php?storyId=111623212

Treating Delirium: An Often Missed Diagnosis
NPR Morning Edition
by Joseph Shapiro
August 10, 2009

Virginia Helton says her husband is a “brilliant” man. He’s a scientist who can explain complex chemistry and physics. But when he was in the hospital last February, she didn’t recognize the man acting so bizarrely — talking wild nonsense and taking off his clothes.

Earle Helton, 79, was diagnosed with delirium, a sudden and frightening onset of confusion. A common but often unrecognized problem in hospitalized elderly people, delirium is estimated to affect more than 2 million seniors a year.

“I was feeling very scared,” his wife says. “It was very disturbing to see him in all this confusion with disordered speech.”

“I remember quite vividly my desire to escape, and [I] was proposing all sorts of fantastic schemes, according to the kids, as to how I could get out and get out of the hospital,” Earle Helton says. “As a matter of fact, I ended up executing that on at least one occasion and managed to get through the hospital and underneath one of the surgical beds.”

Virginia Helton says staff at the hospital “tied his hands down because he kept trying to get out of the bed, and that made him furious. And they did that several times when he was in this state of delirium.”

Dr. Sharon Inouye was working at the Boston hospital where Helton was a patient. She recognized he was on an anti-seizure medication that could cause confusion. She stopped the medicine, but it took a few days for the drug to clear his system and the delirium to stop.

Inouye, a geriatrician at Harvard Medical School and Hebrew Senior Life, says it’s easy for doctors to miss delirium. Most of the time, a person with delirium is inattentive and may have trouble following a conversation. Sometimes, the symptoms are more obvious.

“What we look for is a person who is having a lot of difficulty answering questions,” Inouye says. “They often will not make sense. They may hallucinate. They may be very agitated. They may have a totally different personality. You know, very often family members will say to me: ‘He’s nothing like that at home.’ ”

Inouye saw delirium in her own father, who was also a physician.

“My father wound up getting delirious even when I was there at his bedside,” she says. “I’m an expert in delirium, and I couldn’t prevent it from happening.”

Inouye attributes it to hospital care that has become complex and fragmented.

“There were just so many physicians taking care of my father, so many medications,” Inouye says. “It was really hard for me to keep track of everything. You know, I knew there were certain medications he couldn’t tolerate, and I told one group of physicians, and then another group of physicians would prescribe it. And so it really just was quite eye-opening for me.”

If one of the world’s leading researchers on delirium couldn’t protect her own father, the average American might feel helpless, too.

Still, there are precautions a patient’s family can take. Family members can start by becoming more aware of the drugs that cause delirium, says geriatrician Malaz Boustani at Indiana University School of Medicine.

One class of medications that can be a big trigger is anti-cholinergic medications or common prescription and over-the-counter drugs such as some sleeping pills, asthma medications and antidepressants.

It’s also important for older patients in the hospital to keep using their eyeglasses and hearing aids and be allowed to sleep through the night, says Boustani. Delirium can be triggered by a state of confusion, and these things help maintain a more consistent environment.

Boustani recently studied 1,000 senior citizens who came to an Indianapolis hospital. One-third developed delirium. And those who spent more time in the hospital had a higher risk of going to a nursing home or of dying.

Doctors often dismiss delirium, Boustani says, because they think it’s just dementia in older people. The two are different. Delirium is a temporary form of cognitive impairment, whereas dementia is a more long-term problem that involves issues with at least two brain functions, such as memory loss along with impaired judgment or language.

Still, there’s a link between dementia and delirium.

“What we found [is] that if you develop delirium in the hospital and we follow you up to five years, the odds of developing dementia or Alzheimer’s disease is five times more,” Boustani says. “And the question is: Is it the delirium itself that caused toxic insult to the brain and then triggers spiral evolution to develop dementia? Or was the delirium simply a positive stress test for dementia?”

Boustani suspects that an episode of delirium shows dementia that already exists or is developing. But other researchers suspect that getting delirium in the hospital can cause long-term dementia.

That’s one more reason why it’s important for researchers, doctors and patients to better understand delirium that occurs in the hospital — and how to avoid it. Boustani says studying delirium appeals to him because it’s one condition in the elderly that can be reversed, not to mention something he just might encounter in the future.

“It’s a fulfilling feeling as a doctor,” Boustani says. “At the same time, I want to live as long as possible.”

He says that if he lives that good, long life, the chances are that he’ll be an elderly man in a hospital one day. “I want to be proactive and make sure the system is ready for me.”

Speech/voice exercises (by Rose Chable, SLP)

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A couple of years ago these oral exercises were posted to one of the MSA-related Yahoo!Groups. These three documents were written by Rose Chable, a speech language pathologist. I suspect they were written several years ago.

Document #1
Oral Exercises
By Rose Chable, Speech Language Pathologist

Three things to keep in mind for oral exercises; strength, flexibility, and coordination.

Here are some examples.

For STRENGTH:

Use a tongue depressor, popsicle stick or small spoon for resistance.

1. As you’re trying to stick out your tongue, press against your tongue with the depressor, etc. You can use this same idea in all positions for your tongue—

2. trying to stick your tongue out beyond the corners of the lips and pressing back for resistance, etc. You can use this with the lips too.

3. Pucker hard and press back for resistance. Another for the lips,

4. blow lots of air into the cheeks; don’t let air escape through the lips. If trouble loosing liquid from lips,

5. press lips together firmly (no red of the lips showing) and hold for one minute intervals. Try holding thin objects with lips only (no teeth) for longer periods of time (ie. use straw, tongue depressor, thermometer).

6. Make the loudest kissing sound you can (the louder, the stronger your lips are).

7. Say Coke, cake, cook…. each word with strong “c/k” sounds to get the tongue to go up in back (this is usually good for swallowing too).

For FLEXIBILITY:

The goal here is to get your tongue and lips to move to the FULL extent possible.

Examples:

1. Stick tongue straight out way beyond the lips; hold for 3-5 seconds. If you have trouble doing this, wrap a piece of gauze or similar material around your tongue and GENTLY pull out, stretching slightly and hold. Like any muscle, don’t stretch to a point of pain. (This one’s usu. good for swallowing too).

2. Stick tongue tip into each corner of the mouth. If easy, stretch beyond the corners, as if getting peanut butter (or whatever) from the sides of your mouth.

3. Stick tongue up to top lip then down beyond bottom lip as far as possible.

4. “count your teeth with your tongue”; try to reach every tooth in your mouth with your teeth.

5. Stick tongue into each cheek and push the cheek out as far as possible with the tongue. Try to go farther back in your mouth towards back teeth. (Good for swallowing if the person has difficulty getting the food out around the teeth)

6. Lick lips all the way around, not missing any part of the lips while keeping your mouth open slightly. Try to get your tongue beyond the red border of your lips.

7. For lips, Alternate hard pucker with WIDE smile.

8. Alternate Open mouth WIDE, press lips together firmly.

For COORDINATION:

The goal here is keeping consistently strong movements while speeding up the movement in a repetitive fashion.

1. Move tongue back and forth into each corner of the mouth (make sure you touch each corner). Speed up as quickly as possible. Keep your tongue moving consistently, like to the beat of drum that’s getting faster.

2. Pretend to lick a popsicle; open mouth sligtly and keep it open. Put tongue down on chin then “lick” up to top lip. Do as quickly as possible but make sure the movement is accurate.

3. Lick lips all the way around but speed up as quickly as possible with mouth open slightly. Don’t miss any part of the lips. Change directions.

4. As some have mentioned, repeat sequences of syllables (mama or Puhpuh=for lips, Lala or Tuhtuh= tongue tip up, Kaka or Kuhkuh=raising back of tongue).

Do sets of sequences quickly but accurately; all sounds must be heard. This is an example of one set to do:
“Puh Tuh Kuh, Puh Tuh Kuh, Puh Tuh Kuh”

To INCREASE SENSATION AND FLEXIBILITY if difficult to do above:

1. Use a toothbrush’s flat side and press firmly down in the middle of your tongue then try the “c” words…cook,etc.

2. Run the toothbrush back to front on your tongue…..then stick out your tongue as far as possible.

3. Run the toothbrush down the sides of your tongue diagonally. Do one side then try to get your tongue to the corner of the lips in the direction you were rubbing.

You can also use a “Nuk brush” or oral sponges sold in pharmacies. Any of these things can be put in the freezer or add lemon to them to get even more sensation.

Pick and choose based on what you have difficulty with, then do the exercises that you’ve chosen ten times each, two times each day and see where that leads. Work on exercises that are somewhat challenging but not frustrating and try to work up to the ones that are the most difficult if you can.

Document #2
Exercises for Clearer Speech
By Rose Chable, Speech Language Pathologist

Here are some things to keep in mind for clearer speech:

When talking, concentrate on the following:
1. Open your mouth wider
2. Separate your words and syllables (Examples: Mi-am-i Flor-i-da or I’ll see you to-mor-row).
3. Pronounce EVERY sound (overexaggerate)
4. Take a deep breath prior to speaking
5. Take a breath after every 4-5 words
6. Be LOUD

Most people who have weakness/decreased coordination of the tongue, do best using #1 and 2.

If it’s mostly a voice problem (too soft), concentrate on #6 and 4.

Have someone else listen to you during a short conversation with them and have them give you feedback on if you’re really using the strategies or need to do more of them.

Or, you could tape record yourself for your own feedback.

Document #3
Lee Silverman Voice Therapy
By Rose Chable, Speech Language Pathologist

This is an overview of the Lee Silverman Voice Treatment Method:

Contact speech therapists in your area and ask if they have been trained to do LSVT. The CONSTANT reminder to the patient is to “BE LOUD” Some of the basics are:

1. Take a big breath and hold the “e” sound as long as possible on a comfortable pitch level and LOUDLY (above conversational level speech).

2. Do a scale on the “o” sound, gliding from lowest to highest pitch LOUDLY.

3. Make a list of 10 sentences that the person says on a daily or regular basis and have them repeat or read the sentences LOUDLY.

Do each of the above three times daily.

People who have Parkinson’s usually think they are yelling when they first do this so it’s important to give feedback that the loudness level is good. The practice LOUDLY is very hard to start carrying over into conversation. After doing the above exercises for two weeks, 3 times a day, then add.

4. Talk for 5-15 minutes in conversation and speak LOUDLY (the patient ot the listener).

The research was found to have the best results when the above items are done daily for at least 4-6 weeks.

It’s really best to have a speech therapist directly work with you at least on a consult basis so you will have feedback on how loud is appropriate and if other adjustments need to be made.

Caregiving Webinar with John Burhoe – Notes

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Today, CurePSP (psp.org) hosted a wonderful webinar on caregiving with John Burhoe.  The presentation was a personal view of dealing with progressive supranuclear palsy (PSP) through the eyes of a veteran caregiver, John Burhoe.  John and his wife (Mary) Lou were married almost 45 years, “with the last five under the cloud of PSP.” He shared his story today because he wants to help prepare others going down this path.

Here are my notes.

Robin

————————————

John had two “advantages” not all have:
* ability to generate income while being home 24/7
* he is 6’3″, 225 lbs while Lou was 5’5″, 130 lbs.

The PSP journey began with Lou falling in the bathroom in 2002. They visited an MD at Scripps in San Diego. The MD’s diagnosis was “Parkinson’s Plus.” An MD at Mass General in Boston saw Lou three times; on the third visit, the diagnosis of PSP was given.

“The journey is much like a flight of stairs as opposed to a declining ramp with periods of relative stability punctuated by sudden and permanent drops.”

Example: In January 2007, Lou lost the ability to speak literally overnight. This ability never returned.

Lesson learned: Find multiple sources of support. These may not necessarily be where you would expect them.
* SSI (Sports, Spine & Industrial) is a facility in Greer, SC providing a combo of sports training, workout, and PT. Lou went twice a week. John could also work out at the same time.
* Church.
* Hospice.

Great aids:
* Portable aspirator ($250) – useful for choking spells
* Writing board is a great help in communicating. Also, ask yes/no questions (thumb up/down, or squeeze the finger).

Lesson learned: Educate yourself.
* curepsp.org: This website is being revised later this year and will be even better.
* Find other websites for info
* Support groups are a great source of info and comfort. Often caregivers get more out of these groups.

Lesson learned: Maintain the relationship.
* Look for and share the humor, albeit sometimes dark. John told the story of the “toilet tango” – dancing to the bathroom.

Lesson learned: Make sure others know the person behind the mask that you know. Introduce them to that person. NEVER let anyone refer to your loved one in the third person when he or she is sitting right there. (eg, “Does she want this?”) Nothing is more dehumanizing or degrading than that.

Lesson learned: Look out for “compassion stress and fatigue” and do something about it if this occurs.
* Short temper
* Depression
* Feeling sorry for yourself
* Social withdrawal
* Resentment towards your loved one
* Tears

Lesson learned: Take action.
* Ask for help. People want to help but you MUST tell them how.

Lesson learned: Take a “breather” to get away from the situation. And give your loved one a breather from you!
* You will lose your temper and say things you regret. You’re human – forgive yourself. Sounds easy, but it’s not.

Lesson learned: Don’t wait – do it now and for as long as you can. Examples: put a porch on the back of their house. Took car trips. Took airplane trips to visit grandchildren. The airlines are very helpful with wheelchair-bound passengers. Every day up until December 2007, John and Lou were in a car. They went to church up to the week Lou died.

Lesson learned: find a good local neurologist with whom you are both compatible.

Lesson learned: Allow yourself to have diversions.
* Three businesses with partners
* Promoting the concept of hospice
* Building awareness of PSP
* Reaching out to sister organizations for ALS, AD, and PD.

Lesson learned: Don’t feel sorry for yourself. What good will that do?
* Count your blessings and treasure the times you’ve had and still have together. John had a kitchen table filled with pictures of Lou and family and friends. Every time John walked by the table, he’d pause, look, and count his blessings.
* Right now focus on your loved one’s happiness.

Lesson learned: Be willing to fail. Whatever it is, try it. If it doesn’t work, and some won’t, at least you gave it a shot.

Issues you need to decide for yourself:
* whether to stay at home or utilize an extended care facility. This is often decided based on the physical size of the care giver and care recipient.
* whether to insert a feeding tube or not. Thoroughly research this, including having discussions with your MD. He recommended this website for some info on this decision: neurosy.org/disease/psp/psp-swallowing.html

Lesson learned: Don’t wait to get hospice involved! Get them involved early! John and Lou had hospice for 18 months.
* visit your local hospice organization and discuss the certification criteria
* major source of information, support, compassion, and experience
* Medicare covers this
* provides medical info, personal care, caregiver support, spiritual support
* you need an MD’s prescription

One day, Lou said: “I want to go home. Are you OK?” She said this after not having spoken for a year. The family gathered. Once the family was gathered, Lou died peacefully. (In 2008.)

John said that he felt relief in Lou’s passing. He pointed out that no one talks about this. Relief is “a natural phenomenon that everyone feels because a great load has been lifted from your shoulders and you now have your life back. No one talks about this but everyone experiences it.” After Lou died, for the first time in five years John had his own life back.

The five-year journey brought John closer to God.

Feelings and memories of his wife Lou are triggered by all sorts of things.

John established the “Mary Lou Burhue Scholarship Fund” to honor his wife and provide assistance to young people who mirror Lou’s core values of dignity, character, grace and humor in the face of adversity. Awards totaling over $20K have been made to 12 students.

John got married again about a year after his wife died. His new wife is Carolyn, Lou’s best friend of over 25 years. John responded to those who wondered about the “quick” re-marriage. John made two points. First, he had been grieving for Lou long before she died.

Second, John provided this quotation: “Your love for one person will never diminish your love for another. Love never divides, it always multiples.” — The late Dr. W.A. Criswell of Dallas

“Life goes on…honor your loved one by participating in it.”

Questions and Answers: (answers are by John Burhoe, unless indicated)

Q: Do PSP patients understand what is happening to them?
A: Yes – for Lou. This is not true for everyone.

A by Janet Edmunson: We need to act as if the loved one hears and understands everything.

Q: Since PSP and CBD are degenerative, what is the point of regular visits to the neurologist?
A: This is a dark view of things – saying “what’s the point?” Never give up. Never stop searching.

Q: Can you talk a little about your experience with sleep patterns and PSP/CBD?
A: John and Lou slept together throughout the disease. Neither John nor Lou had problems sleeping.

A by Janet Edmunson: Her late husband Charles (with pathologically-confirmed CBD; died at age 51) had terrible problems sleeping. Charles woke up hourly and he also moved around in bed a lot. The only medication that allowed him to sleep was Seroquel, an antipsychotic. Janet used TylenolPM for herself. Janet also slept on the floor next to the bed.

Q: Will you elaborate on your use of the portable aspirator?
A: It cost about $250. It took a long time to feed Lou. Liquids were thickened. Lou experienced one or two hour choking spells. These were more episodes of gagging, not coughing. The aspirator could be used to get some of the food out that had lodged in the throat.

Q: If you feel incompatible with your neurologist, what is the best way to find another one?
A: John did fire a neurologist from Duke. He found a local neurologist that both he and Lou liked.

A by Janet Edmunson: Use the PSP Forum to ask if anyone knows a neurologist.

A by Kate DeSantis, CurePSP: People can do a Google search on “movement disorder specialists.” Search on WeMove.org for MDs. Email Kate ([email protected]) for an MD referral. She has a list of MDs associated with the Movement Disorder Society.

A by participant: Referrals to local movement disorder specialists can be obtained through the APDA (American Parkinson Disease Association) Information & Referral Centers, apdaparkinson.org.

Q: Does/can hospice involve giving up therapies? PT, OT, speech? And meds?
A: Hospice doesn’t normally cover therapies. They

A by Janet Edmunson: If a therapy involves comfort or safety, hospice should cover it. You might get occupational therapy because they want to make sure the patient is safe in the home. Every hospice is different.

Q: Did Lou take antidepressants or other meds that you found helpful?

Q: What is the best way you found to prevent falls?
A: He’s not a good reference for this question. Lou’s first fall was her last fall. John is large enough that he was always able to prevent her falls.

A by Janet Edmunson: “Impulsivity” happens. Charles would get up on his own, despite being told that this was unsafe.

Q: What were your warning signs that Lou was nearing the end?
A: In Lou’s case, she decided when it was time to throw in the towel and she decided the time of her own death. In the last week, hospice put her on morphine. “People can very much pick the time and place of their death.” Lou “fought the good fight…and finished the course.”

Q: How did you communicate with Lou once she was unable to move her hands well?
A: John and Lou had been married a long time, he usually knew what she wanted. Lou was able to squeeze John’s finger up until the very end.

Q: What is your experience with vision problems?
A: Lou lost the ability to read very early. John and Lou got out a lot and attended many social events.

Q: What do you think is the best way that family members living away from the patient can be of help to the caregiver?
A: Visit, if you can. Sometimes giving money can be helpful. Let the caregiver and patient know that you care and you are there.

Q: A participant stated that a “transfer platter is helpful for moving patients between bed and chair, etc.” It was later described as a 12-14″ disc.
A: Neither John Burhoe nor Janet Edmunson were familiar with a “transfer platter.”

Q: Will you speak to how to handle inappropriate behavior in social situations?
A: Lou never behaved inappropriately. John feels blessed.

A by Janet Edmunson: Charles went through a stage of yelling, which was very uncharacteristic. He sometimes got agitated in public places. Humor might help. Sometimes they would just have to leave the restaurant or public place.

Janet told a story about Charles’s love for frozen yogurt. He would end up with frozen yogurt all over his face and clothes. They would just laugh about it. It was a special treat. So what if she had to wash his clothes after each outing?

Q: How did you explain the disease to your grandchildren?
A: His 5-year-old granddaughter didn’t require an explanation. The granddaughter just gave love to Lou, and Lou gave love back. Kids have wisdom and behavior beyond their years. Even the older grandkids didn’t require an explanation.