Understanding Uncontrollable Crying or Laughing

by Sheila, a mother living with early-onset Alzheimer’s dementia

pba-laughcry (1)After my father passed away in ’99, I went into a depression. Coincidentally, at about the same time, I started getting Alzheimer’s symptoms. My daughter, Dominique, says it was like I was going into a daze.

In addition to my other symptoms, I found myself having these episodes where I would just start crying out of the blue and I would have to shut myself away where people couldn’t see me. I thought the crying outbursts were just part of the depression. But then I also started having episodes of uncontrollable laughing.

I know it was hard for Dominique because sometimes she would want to have a serious conversation about something at school and all I could do was laugh. Sometimes I would also have these laughing episodes at her basketball games which was embarrassing for her.

Because I was crying AND laughing, I suspected there must be something more than just depression going on. Finally, Dominique and I went to talk to my neurologist about it and that’s when he diagnosed me with PBA (PseudoBulbar Affect). PseudoBulbar Affect (PBA) symptoms are frequent, uncontrollable outbursts of crying or laughing in people with certain neurologic conditions or brain injuries. PBA can occur when certain neurologic diseases or brain injuries damage the areas in the brain that control normal expression of emotion. This damage can disrupt brain signaling, causing a ‘short circuit’ and triggering involuntary episodes of crying or laughing. Understanding the reason for my outbursts has made it a little easier to live with. Better still, my doctor has helped me decide on a treatment plan for my PBA.

To learn more about PBA, please visit https://www.pbafacts.com/ where you will find additional facts; an assessment sheet for you, your loved one or client, and 9 Questions for You and Your Doctor to begin the process of evaluation.

– See more at: https://www.pbafacts.com/patient-stories/sheila

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WHEN SIBLINGS CLASH: excerpts from NO EASY WAY OUT

by Nina Marie Sherrer & Jean M. Kryzer, RN, BSNSiblingsClash.jpg.

This article is not full of statistics and numbers from studies and research. It very briefly explains our shock and awakening to the law and to dementia. It is a wake-up call to caregivers and to anyone diagnosed with dementia – whatever stage or type of memory loss. It is a wake-up call to get involved and help others live to the fullest possible extent that gives them the dignity, respect, and honor they deserve.

It is imperative that everyone realizes the NOW of dementia. What can be done now to help those diagnosed with dementia? They need to live a full life that is laced with dignity, respect, purpose, and compassion. Those living at home with caregivers and/or in memory care facilities need to be treated as the adults they are. Life must have meaning. There is No Easy Way Out around this!
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When our father died, within ten days our lives and our mother’s life changed forever. We knew our mother’s official papers (Will, Power of Attorney, Healthcare Directive, End-of-Life Declaration.) were in order and began following her wishes. What we thought was good began to unravel and turn into what appeared to be deceit and greed. Unfortunately her official papers did not matter. 

A brief check by a physician, determining memory loss, can undermine and create havoc in a family situation. How much memory loss enables someone else to take away personal rights and who can take away those personal rights? Our mother’s appointed Attorney’s-In-Fact and Health Care Agents were willing, able and caring for her after our father’s death. But that’s not what some of our siblings wanted. Unforeseen and uncalled for events, in this case the filing of emergency guardianship and conservatorship petition in court, became devastating for our family.

Now, she was just a person with a “dementia label” with all decisions made by others. The legal papers she carefully made are null and void. She is considered incompetent by the Court system. One of her children has made her a ward and protected person of the state for LIFE. Our precious mother is now an “unwarranted ward”.

We were shocked, upset and angry, and determined to save our mother because no one else seemed to care about her. A crash course in research, learning as much as possible about law, guardianship, conservatorship, where the actual power of the courts lie, led us down paths we never imagined.

The more we researched, the more we wondered how many more people were in a situation like ours:

  • Beware of the vultures hovering. Make sure all the “end of life” paperwork is in order. Make sure you, as a potential caregiver, are ready to fight for your loved one’s wishes, and remember it is their wishes, not yours. Whether you become a caregiver or are diagnosed with dementia you must make your wishes known and make sure those carrying out your wishes will follow your instructions. Find an attorney you can trust. Don’t stop with the proper legal paperwork.
  • Make a video of what you want to happen to you. Who will take care of you the way you want? Make sure you appoint who will be your voice of the future.

Within eight months we had to make concessions for saving mom. We had to learn there was No Easy Way Out other than believing through education and research we could make a difference and help our mother. We had to keep our promise to our father and help our mother to enjoy life and feel loved.

Link to full article: http://savingmom.org/18.html

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Setting Standards for Dementia Care

ann ellettby: Anne Ellett, Nurse Practitioner, M.S.N., Gerontology Consultant, has worked in the arena of elder care and gerontology for more than 2 decades. Most recently, she held the position of Senior Vice President at a national company that was a recognized leader in caring for elderly, specializing in dementia care.

It was good news to read that at the Assisted Living Federation of America’s (ALFA) most recent national conference in May, setting standards for dementia care was identified as a critical issue for their organization. Studies indicate that up to 60-70% of residents living in assisted living are affected by memory changes such as MCI (mild cognitive impairment), Alzheimer’s disease, vascular dementia or some other type of dementia. Current types of care programs often fall far short of meeting the unique needs of these residents.
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Providing compassionate and life-affirming care for people living with dementia is complex. The pervasive culture of “person-centeredness”, providing care that is individualized and respects the “whole” person, needs passionate leadership, adequate staff training and engagements that are stimulating and interactive. This type of care is not easy to deliver. We can hope that ALFA’s focus on setting standards for dementia care will provide the “top down” support for dementia care providers to assess their programs and improve as needed.

Consumers shopping for senior housing may assume there are already standards in place for dementia care. Almost every assisted living sells itself as providing “memory care” for their residents. Unfortunately, not every assisted living community has done its “homework” and prepared a safe and life-affirming environment for their residents affected by dementia.

Each state has its own regulations defining which type of assisted living can provide care for people with dementia. There are no national standards. Most states have regulations that require some additional training, but it varies from 6 hours up to 40 hours of training. Some states require that there is nursing on-site, other states may only require a nurse available “on-call”, or no nurse at all. Most states don’t specify staff ratios for caring for individuals with dementia, but will write something vague like “staff must be adequate to provide for the health and safety of the resident” – interpretation is left to the dementia-care provider..

As consumers of dementia care services, it behooves you to ask questions of potential providers: If you’re moving your loved one into a memory-care assisted living, what are their standards? Can they explain those standards to you and also explain how they operationalize them – how many hours of training does their staff receive? What is the ratio of direct care staff to the residents? How do they handle emotional outbursts (behavioral expressions) by residents? Do they have a medical director or other health care providers who visit the residents on-site? What is their system for handling a resident who becomes ill?

It’s not enough to pour all our national resources into finding a cure for dementia. The national crisis is in the immediate need for developing better models of care. As customers of dementia care, you can help improve standards of care by asking questions of assisted living providers and showing them that you expect trained personnel, adequate

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There is No One Better Than YOU to Speak Up

by Michael Ellenbogen, Dementia AdvocateMichael Ellenbogen

I am going to start with the end in mind. You can do all this no matter what your challenges are. In 2008 I was given a diagnosis of Alzheimer’s disease after struggling for 10 years. As a workaholic I found it difficult when I could no longer work, or have purpose in life; something that is so important so we do not spiral into decline.
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Early-on I reached out to the Alzheimer’s Association hoping I could volunteer my time in a meaningful way. However, it transpired that no one was willing to trust me to do any job I really wanted; they were only prepared to let me do simple jobs that I disliked. Eventually they placed me on a committee where I have had lots of input and a huge impact on others’ lives.

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Music Benefits Your Brain

Brains Benefit from MusicWhen you listen to music, multiple areas of your brain become engaged and active. But when you actually play an instrument, that activity becomes more like a full-body brain workout. What’s going on? Anita Collins explains the fireworks that go off in musicians’ brains when they play, and examines some of the long-term positive effects of this mental workout.  Click the graphic to see an explanatory video.

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DANCING MAKES YOU SMARTER

By Richard Powers: Richard has been teaching historic and contemporary social Senior_dancesdance for 40 years. He leads workshops around the world and is currently a full-time instructor at Stanford University’s Dance Division.

For centuries, dance manuals and other writings have lauded the health benefits of dancing, usually as physical exercise. More recently we’ve seen research on further health benefits of dancing, such as stress reduction and increased serotonin level, with its sense of well-being. More recently we’ve heard of another benefit: Frequent dancing apparently makes us smarter.

A major study added to the growing evidence that stimulating one’s mind by dancing can ward off Alzheimer’s disease and other dementia, much as physical exercise can keep the body fit. Dancing also increases cognitive acuity at all ages.

You may have heard about the New England Journal of Medicine report on the effects of recreational activities on mental acuity in aging. Here it is in a nutshell:
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The 21-year study of senior citizens, 75 and older, was led by the Albert Einstein College of Medicine in New York City, funded by the National Institute on Aging, and published in the New England Journal of Medicine. Their method for objectively measuring mental acuity in aging was to monitor rates of dementia, including Alzheimer’s disease.

The study wanted to see if any physical or cognitive recreational activities influenced mental acuity and discovered that some activities had a significant beneficial effect while others had none.

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Robin Williams & Lewy Body Dementia

By Lewy Body Dementia Association:Robin Williams

ATLANTA (November 10, 2014) — The recent release of the autopsy and coroner reports on Robin Williams has raised questions about his state of health at the time of his tragic suicide earlier this year.  Some news reports indicate that Mr. Williams had dementia at the time of his death.

The Lewy Body Dementia Association (LBDA) provides information about what can – and cannot – be concluded from these reports.  The autopsy indicated the presence of ‘diffuse Lewy body dementia’ in the brain of Mr. Williams. This is more commonly called ‘diffuse Lewy body disease’ which reflects the biological disease process in the brain.

“The use of the term dementia in the neuropathology report should not be inferred to mean that dementia was observed during life,” warns Dennis Dickson, M.D., Mayo Clinic in Jacksonville, Fla. and member of the LBDA Scientific Advisory Council.

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Lewy bodies are mis-folded protein deposits found in the brains of individuals with several different disorders including Parkinson’s disease (PD) and dementia with Lewy bodies (DLB).

According to his wife, Robin Williams was battling “the early stages of Parkinson’s disease” before his death. In early PD, Lewy bodies are generally limited in distribution, but in DLB, the Lewy bodies are spread widely throughout the brain, as was the case with Robin Williams.

Dr. Dickson, who has reviewed the autopsy and coroner’s report, further states, “Mr. Williams was given a clinical diagnosis of PD and treated for motor symptoms. The report confirms he experienced depression, anxiety and paranoia, which may occur in either Parkinson’s disease or dementia with Lewy bodies.”

Both Parkinson’s disease with dementia and DLB are considered Lewy body dementias because of the presence of Lewy bodies in the brain. Collectively, Lewy body dementias are the second most common form of dementia and affect an estimated 1.4 million Americans.

To receive a diagnosis of dementia with Lewy bodies, a person must have significant problems with thinking and memory that interfere with everyday life. There is no mention in the media or in the autopsy report that Robin Williams exhibited these symptoms.  It is not uncommon, however, for early signs of dementia to go undetected. The Mini Mental Status Exam – a common screening test for cognitive impairment and dementia used by many physicians – is not able to detect cognitive impairment in early DLB.

“Further research is needed to better understand why some individuals with diffuse Lewy body disease do not show symptoms of dementia,” according to Dr. Dickson. “In particular, we need to learn how dementia with Lewy bodies differs clinically from Parkinson’s disease when they both share the same underlying disease process.”

DLB and PD share many symptoms, but have different patterns of onset, progression and symptom severity. The most prominent and problematic clinical symptoms in early PD are related to movement, while in DLB they are more likely to be cognitive and psychiatric. However, over the course of both disorders, the symptoms become more and more alike.

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The Burden of Stigma

by Ken Clasper, individual living with Lewy Body Dementia
KenClasper
Stigma is a terrible thing, but it’s not something which is new,it has been around for many years.

We have seen stigma in many illnesses,like cancer in the 1950-60s. It has also been attached to Aids, and recently Ebola, yet much of it is caused by old stories and myths, which do not seem to go away; possibly because many people simply believe they are true.

I have been asked on many occasions whether dementia us contagious, something which has left me staggered. Some think you can catch it if someone who has dementia sneezes.

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But I believe much of this stems from the fact that it sometimes seems to run in families; but most of it seems to come from the fact that some forms are called disease, like Lewy Body Dementia, which in some cases is called Lewy Body Disease; just one case in many.

Some charities sometimes call themselves “Alzheimer’s Disease” or “Dementia Disease”, and this also helps keep the stigma going. I suppose this is because professionals cannot decide what to call illnesses; or people call things by different terms and names.But I feel that much of this could be stopped if everyone was educated properly about this illness, rather than picking up odd pieces and trying to find the truth their own way

To educate everyone we should be starting with school children, who are already learning about someone in their families who has the illness. Many of these children want to learn more about what is happening to granny or grand dad, and it’s now time to start helping them understand just what is going on. These are the people who will shape the future in stopping this stigma, and therefore we must help them to help us.

Years ago parents kept their children out of the way, when someone had dementia, but now things have changed for the best, and it would be much better without the stigma. I have also heard stories of people crossing the road, so they did not come into contact with someone who had dementia in their families. This usually happened in very close communities like small villages.

So it’s time to find a way of getting into all schools, to teach all children that stigma, is not a nice thing, no matter which illness it’s attached to. Teachers should allow people with illnesses into schools to help educate those who are our future support.

The Government says that they are dementia friendly, so it’s time they factored this into education. It does not need to be an examination study, just allow us in during free time to speak to children and explain our problems and the stigma which is attached to it.

Let us hope that sometime soon things will change and change for the best. Let us all work to remove all stigma once and for all

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Her Name Is Rose

the rose
The first day of school our professor introduced himself and challenged us to get to know someone we didn’t already know. I stood up to look around when a gentle hand touched my shoulder. I turned around to find a wrinkled, little old lady beaming up at me with a smile that lit up her entire being.

She said, ‘Hi handsome. My name is Rose. I’m eighty-seven years old. Can I give you a hug?’

I laughed and enthusiastically responded, ‘Of course you may!’ and she gave me a giant squeeze.

‘Why are you in college at such a young, innocent age?’ I asked.

She jokingly replied, ‘I’m here to meet a rich husband, get married, and have a couple of kids…’

‘No seriously,’ I asked. I was curious what may have motivated her to be taking on this challenge at her age.

‘I always dreamed of having a college education and now I’m getting one!’ she told me.

After class we walked to the student union building and shared a chocolate milkshake. We became instant friends. Every day for the next three months we would leave class together and talk nonstop. I was always mesmerized listening to this ‘time machine’ as she shared her wisdom and experience with me…

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Over the course of the year, Rose became a campus icon and she easily made friends wherever she went. She loved to dress up and she reveled in the attention bestowed upon her from the other students. She was living it up.

At the end of the semester we invited Rose to speak at our football banquet. I’ll never forget what she taught us. She was introduced and stepped up to the podium. As she began to deliver her prepared speech, she dropped her three by five cards on the floor. 
Frustrated and a little embarrassed she leaned into the microphone and simply said, ‘I’m sorry I’m so jittery. I gave up beer for Lent and this whiskey is killing me! I’ll never get my speech back in order so let me just tell you what I know.’

As we laughed she cleared her throat and began, ‘ we do not stop playing because we are old; we grow old because we stop playing. There are only four secrets to staying young, being happy, and achieving success. You have to laugh and find humor every day. You’ve got to have a dream. When you lose your dreams, you die. We have so many people walking around who are dead and don’t even know it! There is a huge difference between growing older and growing up.

If you are nineteen years old and lie in bed for one full year and don’t do one productive thing, you will turn twenty years old. If I am eighty-seven years old and stay in bed for a year and never do anything I will turn eighty-eight. Anybody! Can grow older. That doesn’t take any talent or ability. The idea is to grow up by always finding opportunity in change. Have no regrets. The elderly usually don’t have regrets for what we did, but rather for things we did not do. The only people who fear death are those with regrets.’

She concluded her speech by courageously singing ‘The Rose..’ She challenged each of us to study the lyrics and live them out in our daily lives. At the year’s end Rose finished the college degree she had begun all those years ago.

One week after graduation Rose died peacefully in her sleep. Over two thousand college students attended her funeral in tribute to the wonderful woman who taught by example that it’s never too late to be all you can possibly be.

REMEMBER, GROWING OLDER IS MANDATORY. GROWING UP IS OPTIONAL. We make a Living by what we get. We make a Life by what we give.

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