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

Safety in the Comfort of Home:

M Trepicchio

By Michael Trepicchio, Owner of Aging In The Comfort Of Home, a home modifications company dedicated to doing home modifications/remodeling so that seniors, people with dementia and people with disabilities are safe in their own home.

 

Home Safety is Important for seniors, especially those with dementia. It makes it safer for the senior or person with dementia but is also less stressful for the caregiver, and family members.
Continue reading

General Safety Tips:

  • Display emergency numbers and home address near all telephones so it will be easier for them to remember.
  • The use of an answering machine has several benefits — A person with dementia often may be unable to take messages or could become victims of telephone scams.
  • Make sure that smoke alarms and carbon monoxide detectors are near the kitchen and all sleeping areas, and properly functioning.
  • Make sure that locks on all outside doors and windows are secure.
  • Keep a spare house key in case the person with dementia locks you out of the house.
  • If it is absolutely necessary to use extension cords make sure they are secure to avoid tripping.
  • All rooms should have adequate lighting – poor lighting is a major cause of falls
  • If the home has multiple levels consider the following: Install light switches at the top and the bottom of stairs; install handrails on both sides of the staircase and if the person has mobility issues consider a chair lift.
  • If the person is in a wheel chair make sure all doorways and entrances are wide enough or widened to accommodate.
  • Suggest a medication delivery system – such as daily pill dispenser – so that they don’t over or under medicate due to forgetfulness. The remainder should be safely stored.
  • Clutter should be eliminated especially where people walk
  • Scatter or area rugs should be secure or removed to lessen the chance of slipping and falling

Outside the House

  • Make sure entrance steps are sturdy and secure and if possible differentiate edge of step.
  • Consider installing a ramp with handrails as an alternative to the steps.
  • Walkways should not have cracks or be uneven, and should have no obstructions.
  • Place a small bench or table by the entry door to hold parcels while unlocking the door.
  • As with the inside make sure outside lighting is adequate. Also consider motion sensors that turn on lights automatically.

Kitchen

  • Consider installing safety knobs and an automatic shut-off switch on the stove.

Bedroom

  • Once again adequate lighting is a must, also consider use of a night-light.
  • Monitoring devices (like those used for infants) to alert you to any sounds indicating a fall or other need for help. This also is an effective device for bathrooms.
  • If they have any trouble with walking or stability, consider transfer or mobility aids such as walkers.

Bathroom

  • Remove the lock from the bathroom door to prevent them from getting locked inside.
  • Bathroom floor should be as slip resistant as possible. Ceramic floors plus water can spell disaster.
  • Consider a comfort height toilet and a raised toilet seat with handrails.
  • Permanent (not suction or towel racks) grab bars should be installed in the tub/shower and near the toilet
  • If the home has a shower consider a shower stool and a hand-held showerhead to make bathing easier.
  • Make sure the hot water heater is set at 120 degrees Fahrenheit to avoid scalding tap water.
  • Once again adequate lighting is a must, also consider use of a night-light.
  • Garage/Shed/Basement
  • For people with dementia you should lock access to all garages and basements if possible.
  • Secure and lock all motor vehicles if they are at the house to reduce the possibility that the person with dementia or a senior with impaired ability will think about leaving.

For more information contact Michael Trepicchio: mtrepicchio@aginginthecomfortofhomenj.com or call 732-788-4746

 

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!
Continue reading

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

Making a Profound Difference

By: Jackie Pinkowitz
Chair, CCAL – Advancing Person-centered Living

two-roadsAs November’s chill fills the air and autumn leaves begin to fall, our hearts and minds naturally turn to thoughts of Thanksgiving, a holiday that invokes coming together with kindness and caring towards one another.

The Picker Institute describes their Always Events® as “… aspects of the patient (person) and family experience that should always occur when patients (individuals) interact with health care professionals and the delivery system.”
Continue reading

Imagine the profound difference we could make across our country if each of us would always show kindness and caring to those we care about and for; i.e., if we made Kindness and Caring A Nationwide Always Event® and applied them consistently, both in our personal lives and in our roles as informal or formal care partners, family members, professionals, providers, and policymakers.

Elton John and Tim Rice’s thought-provoking song “Circle of Life” fittingly describes man’s eternal challenge:

“From the day we arrive on this planet…there’s more to see than can ever be seen, more to do than can ever be done.”   We must “…find our place on the path unwinding in the circle, the circle of life.” 

As we continue to find our place on that path, may we come to realize that what we do and say each day has greater impact, greater reach, and far greater importance than we might ever imagine as we are doing or saying it.  Poet James W. Foley (1874-1939) beautifully evokes the effects our words can have on others:

“Drop a word of cheer and kindness; just a flash and it is gone; But there’s half-a-hundred ripples circling on and on and on, Bearing hope and joy and comfort on each splashing, dashing wave; til you wouldn’t believe the volume of the one kind word you gave.”
“Drop A Pebble in the Water”

Indeed, Mother Theresa acknowledged the magnitude of this impact when she said:
“Kind words can be short and easy to speak, but their echoes are truly endless.” 

In this season of gratitude, may each one of us aspire to creating  a  national culture of caring, respect, and kindness that will promote person-centered care, services, supports and meaningful living for all.

“Far away there in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them and try to follow where they lead.”  Louisa May Alcott  (1832-1888)

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.
Continue reading

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

Are Dementia and Pleasure Mutually Exclusive States?

Chris Laxton expertby Chris Laxton, Executive Director of AMDA, the Society for Post-acute and Long-term Care Medicine

Dementia, including Alzheimer’s disease, confronts us with a challenge: How do we live fully – with dignity, meaning and happiness – in the face of progressive disability and, ultimately, death? Those living with dementia have cognitive and decision-making impairments that often make them unable to answer this question. And when those who provide care and services for them fail to recognize what is meaningful, positive and pleasurable for persons with dementia, they suffer. Furthermore, we need a health care system that fosters dementia-capable caregiving, so that everyone has the opportunity to live fully, with dignity and well-being. Why don’t we have such a system, and what do we need to do to achieve it? Continue reading

In a New York Times editorial last year (“Too Young to Die, Too Old to Worry,” Sept. 20, 2014), Jason Karlawish, MD, a professor of medicine, medical ethics and health policy at the University of Pennsylvania, presented a thought-provoking question: “When should we set aside a life lived for the future, and, instead, embrace the pleasures of the present?” He also offered this challenge: “A national investment in communities and services that improve the quality of our aging lives might help us to achieve this.”

Dr. Karlawish, who will present a keynote address at the 2015 AMDA annual conference in Louisville this month, reminds us that this issue is highly significant for those living with dementia, including Alzheimer’s disease, and their care partners, as they are on the front line in considering the lingering question of how to live fully with the time they have left. Is it an absolute necessity that living with dementia means a life spent “fighting the disease” – or can we posit that a life lived fully is actually a higher value?

“Aging in the 21st century is all about risk and its reduction,” says Karlawish. “Today, 3.6 percent of the [U.S.] population is over 80, and life is heavily prescribed not only with the behaviors we should avoid, but the medications we ought to take. More than half of adults age 65 and older are taking five or more medications or supplements, many of them designed not to treat acute suffering, but instead, to reduce the chances of future suffering.”

Often, families and other care partners think they are doing the right thing for their loved ones by imposing burdensome treatments or interventions. But Dr. Karlawish suggests we ask family members what constitutes a good day even when a person has advanced dementia. “We need to focus on what gives pleasure now, in the present,” he says. This can be a challenge, but it’s an important one. “When individuals have dementia, their lives – their very selves – are constructed by the people around them. We shape their personhood, and that is a tremendous moral responsibility.”*

Taking on this responsibility is at the essence of person-centered care – a concept at the very heart of what we call “dementia-capable” models of care delivery, communities, and caregivers. Let’s work together to bring such a system into being. An entire generation of those living with dementia, and their care partners, deserve no less.

*Excerpted from “Keynoter Puts Patient Pleasure First,” Caring for the Ages, January 2015.

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.
Continue reading

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.

Dementia: Mental Activity Delays Onset; Accelerates & Compresses the Progression

Dr. WilsonBy Robert S. Wilson, PhD, Rush University Medical Center; Neurology®, the medical journal of the American Academy of Neurology, September 1, 2010

New research shows that mentally stimulating activities such as crossword puzzles, reading and listening to the radio may, at first, slow the decline of thinking skills but speed up dementia later in old age.

“Our results suggest that the benefit of delaying the initial signs of cognitive decline may come at the cost of more rapid dementia progression later on, but the question is why does this happen?” Dr. Wilson.
Continue reading

According to Wilson, mentally stimulating activities may somehow enhance the brain’s ability to function relatively normally despite the buildup of lesions in the brain associated with dementia. However, once they are diagnosed with dementia, people who have a more mentally active lifestyle are likely to have more brain changes related to dementia compared to those without a lot of mental activity. As a result, those with more mentally active lifestyles may experience a faster rate of decline once dementia begins.

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.