Tag Archives: caregiving

#KnowMorePD – Elevating Awareness of Parkinson’s Disease

April marks Parkinson’s Awareness Month and the theme the Parkinson’s Foundation has chosen is #KnowMorePD to help elevate the public’s awareness of the disease and to share the resources available to those who are diagnosed with PD and their families

Parkinsons’s Disease (PD) is a complex movement disorder with symptoms that vary from person to person.  Some of these symptoms may include tremors, slurred speech,  a masked face, slow movement, and unsteady gait.  Because PD is largely misunderstood  by the general public and even healthcare professionals, it’s often frightening to see a person struggle with these symptoms.  And when people don’t understand what is happening, they generally react by becoming fearful or avoiding that person.

My mother’s journey with PD was one that she would often describe as life on a roller coaster.  One day, she would feel energetic and would go about her activities with ease, and the next day, exhaustion would overtake her, making the simplest tasks a monumental feet.

Along with the physical symptoms that others would see (and not understand), such as slowness of movement and unsteady gait, PD can wreak havoc on the inside.  My mother, like others  living with PD often struggled with depression, ill side effects from medications that are constantly in need of adjustment, and feeling self-conscious for unexplained  physical movements.  While PD can be managed with medications, it is a disease that progresses, so living with the unknown of what will happen to body and mind can lead to a constant fear of tomorrow.

As her caregiver, I too felt her emotions, because that is what caregivers do – take on the emotions of those they love.  So that ‘roller coaster’ was a ride we both shared.  It’s so very important for persons who are diagnosed with PD to seek education, resources and support – for themselves and their care partners and families.  With education comes empowerment, and with support comes the community of others to help with knowing you are not alone.

While there is so much advancement being done to treat PD and research that will hopefully lead to cure, we must also focus our efforts on elevating our awareness, education, resources and support for this mysterious and challenging disease.   Please support the work of the many national organizations who are working tirelessly to bring an end to PD, and to your local chapters and community organizations who help bring awareness and education to people like my mom and me who journeyed together in living with Parkinson’s Disease.

#KnowMorePD

Pam Brandon is President/Founder of AGE-u-cate Training Institute, a global organization dedicated to supporting aging services providers with caregiver training to improve the quality of life for older adults.

 

 

 

 

Home Sweet Home: Transforming Aging in Place

 

This is where people want to be.. home. It is time to examine changes needed for people stay safe and well with availability of appropriate care and services.

The Home Health/Care Industry quickly stepped up to the plate during the COVID pandemic.  The demand for services ballooned almost over-night, and providers responded with a fierce determination to serve those in need.

The challenges were not that different from long term care.  However, one might argue they were a bit more challenging due to the remote nature of the workforce.

COVID testing and protocol training required an enormous amount of coordination.  Another challenge was the lack of testing for the home-bound elders, and discovering that in desperation for care,  dishonesty of symptoms was a factor.

Transforming Aging in Place

There is no question that most people in need of care assistance wish to remain at home, for as long as possible.  The reality is that meeting this societal expectation is nearly impossible, for many reasons.

Workforce.  The United States is not investing in building a sustainable workforce.

Regulation.  The current regulations constrain homecare service delivery.  In Illinois, the Home Health/Services regulations were last updated in 2006.  This is a likely scenario in other states as well.

Training.  It is time to update content and delivery methods to meet the needs of a remote workforce.

Join in a round-table conversation with Susan Scatchell, Business Development Director of Gentle Home Services and Pam Brandon, President and Founder, AGE-u-cate.  Susan and Pam will discuss the challenges and opportunities to transform the experience of aging in place.

Register here for Home Sweet Home:  Transforming Aging in Place.  Wednesday, March 17, 1:00pm CST.

We hope you are able to join the discussion and help to re-imagine the future of this vital industry.

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a the Director of Grants and Consulting Projects and a Certified Master Trainer with AGE-u-cate Training Institute. In addition, she is an instructor and of Gerontology and Leadership in Aging Services at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.

COVID Recovery: Rebuilding Human Connections

We can restore human connection and relationships post-COVID by understanding the importance of re-awakening the senses through the simple act of touch.

For nine months, we’ve been under COVID-19’s siege.  People residing in care communities are still confined to their rooms, cared for by overwhelmed team members shielded in protective gear and with no outside visitors.

Most certainly, this is devastating blow to any sense of well-being. Now we’re looking ahead to what changes 2021 may have in store. We may finally see a glimmer of hope as we anticipate our collective recovery from COVID.

Before looking forward, let’s glance at the toll on those the precautions keep safe. We’ve all seen first-hand or heard reports of social isolation and loneliness.

As humans, we all have a deep-rooted need for connection with others. We connect through voice, facial expression, body language, touch. Cut off from this bond, anxiety, depression, futility, decreased function, falls, and worsening dementia may set in. Some frail elders stop eating and wither, losing their desire to live.

Of course, every person is unique. Some are naturally resilient and able to better roll with the changes and find meaning in reading, music, and computer or phone calls.

However,   others don’t have the reserves to carry them through, as we see in elders with advanced dementia or other conditions, placing them more at risk for decline.

Our hats are off to all of you working so hard to try to create a connection. Arranging window or porch visits with families, distanced communal activities, video chats, and more.

Our Way Forward

Although we haven’t turned the corner yet to see the end of COVID, now is the time for conversations about how to open the doors again and rebuild lost human connections.

Going straight from “lockdown” to the “old way” probably isn’t an option. Creativity and flexibility is needed well into 2021.

Perhaps the basics is a good starting point. The senses offer a way to reach through the fog of prolonged isolation.

Compassionate Touch is a universal language of the heart that will help fill the void for elders, families, and the care team alike. Even now, a caring touch on the shoulder or a few kind words will help.

Physical closeness without the barrier of a window will make for better hearing and verbal understanding. And one day ahead, when protective equipment isn’t standard garb, facial expressions will be seen again.

Some states created an “essential caregiver” designation for family members, allowing them to help with care and provide companionship for loved ones.  This is a good step forward.

Regardless of how things unfold in your community, let’s keep the conversation going about how we will navigate the next phase—collective recovery.

These two links have powerful videos about the impact of isolation on elders, families, and care staff.

This Article was written by Ann Catlin, OTR, LMT, founder of Compassionate Touch, a program offered by AGE-u-cate Training Institute.

Tough Choices from Tender Hearts: Caregiving During a Pandemic

About a month ago, the Centers for Medicare and Medicaid Services (CMS) issued new guidelines that advocate family visitors to return to nursing homes. At this time only three states are not allowing visits. The guidelines provide specifics on how to visit a family member while remaining safe. Unfortunately, it still means making tough choices between a resident’s mental and physical health.

Reducing Social Isolation

These guidelines highlight the need for residents in long-term care to see family members and loved ones. With these guidelines in place, it helps to bring loved ones back together. What about caring for family members who remain at home? What are the recommendations for keeping everyone at home safe?

Guidelines for Home Visits

In May 2020, AARP published an article on steps to take in safely visiting older family members in their home. Those steps included keeping visits short and wearing protective masks and eyewear when possible. The article also suggested staying away if you feel sick, keeping younger family members away for the time being, and visiting while outside.

Making Tough Choices

Despite the good intentions of these guidelines, serious questions are raised. How are caregivers managing? They are making decisions based on what is best for their family members while balancing issues of safety, health, and protection. These kinds of decisions are not new in caregiving.

The combination of trying to provide care while maintaining social distance and health is even more difficult. And caregivers are also conflicted about bringing love ones into a nursing home and out of the home environment, even though it may be the best possible option.

Lessons Learned?

The COVID-19 pandemic highlights the overwhelming need to address caregiving and those who provide it. We need to take the lessons learned from this ongoing experience and make better options for caregivers, both paid and unpaid. Caregivers continue to continue to give their best. It’s more than past the time to focus on their needs and provide better choices.

Kathy Dreyer, Ph.D., is an Advisor at AGE-u-cate® Training Institute, which develops and delivers innovative research-based aging and dementia training programs such as Dementia Live® and Compassionate Touch®, for professional and family caregivers; kathy.dreyer@ageucate.com