Tag Archives: WholeCareNetwork

Balancing Life, Work and Caregiving


Management is doing things right; leadership is doing the right things.  Paul Drucker

The emotional and financial stress of caregiving affects every segment of our society.  Caregiving touches every industry with an untold effect on the financial, physical and mental health of the family caregiver.  Caregivers face and uphill latter to overcome fatigue, burnout, stress and financial ruin.  I know, I’ve been there!

Assessing the long-term financial impact of caregiving will play a role in shaping local, state and federal policies.  Just recently, (May 2017) the House or Representative passed H.R. 1180, know as the Working Families Flexibility Act.  According to the National Law Review, the bill proposes to amend the Fair Labor Standard Act (FLSA), will allow employees to “bank” comp time for future use.  At least from my point of view, it appears that this Bill falls short of addressing the needs of working family caregivers and their employers.

The financial impact of Caregiving is not limited to the caregiver, the employers is also affected.  Creating an awareness to the critical issues family caregivers face on a daily basis will help the employer and caregiving employee find solutions that have a positive impact in the work place.  Smart employers adopt innovated ways to keep productivity high and help everyone become successful not matter what life throws at their staff.

Employers and their employee caregivers face significant challenges balancing workweblogo with caring for a loved one. On Wednesday August 30th, Impact Broward is taking the bold step to brings the issues facing working family caregivers and their employers to the forefront in Broward County, Florida with the Work/Life Caregiving Symposium hosted at the Urban League of Broward County in Fort Lauderdale.

At the symposium you’ll hear:

  • Hear first-hand accounts of the impacts of caregiving,
  • Learn how flexible HR policies can lead to increased employee retention, improved productivity, and shareholder gains, and
  • Discuss public policies that help caregivers and employers thrive.

Listen too our Work/Life Caregiving Symposium Podcast with Peter Kaldes from Impact Broward and Kim Praitano from Gilda’s Club of South Florida by clicking here! 

Keep your eye on The Purple Jacket for more information on the Caregiving Symposium, the development of the Caregiving Coalition of Broward County and our new website The Whole Care Network!   

For information on how you can participate in the Work/Life Symposium visit Impact Broward by clicking here! 

When we create a collective impact on a social issue that impacts all segments of society, we build stronger communities locally and nation-wide.

Christopher MacLellan,  has a Masters degree in Communication and Leadership from Gonzaga University, the author of “What’s The Deal with Caregiving”,  and a Certified Senior Advisor. To learn more about Chris, simply click here! 

Leave a comment

Filed under Caregiving

Dementia Care: Filling the Role of Spouse and Caregiver


The Purple Jacket is pleased to welcome back guest writer, Samantha Stein from ALTCP.org. 

Dementia care is difficult because of all the changes the care recipient goes through. No amount of money or precaution can fully prepare families for when dementia strikes a loved one, and this reality is even more devastating for many couples. To illustrate, here is a video we came across online of Bob Treanor and his wife, Ruth. Bob provides valuable insight on what it is like for individuals to become dementia caregivers to their spouses.

https://www.youtube.com/watch?v=OEcgUNwwFto

Dementia affects the lives of many individuals. And as the video shows, it certainly does not only take its toll on the diagnosed. It also alters the lives of the people closest to the patient.

For this week’s post, let us discuss all of the intricacies of dementia and what caregivers go through for their family members and loved ones going through it.

Dementia Explained

Before anything else, let us clarify one common misconception: dementia is not a disease. It is the term used to refer to the severe decline in memory or thinking ability that it hinders a person from accomplishing everyday tasks. These signs and symptoms vary, but the most common ones are as follows:

  • Memory Loss
  • Difficulty in language and communication
  • Change in Attention Span
  • Reasoning and Judgment
  • Visual Perception
  • Behavioral Changes

Another misconception that people have is that dementia and Alzheimer’s disease are the same. However, the latter is, in fact, a type of dementia. The other types are listed below:

  • Vascular dementia
  • Dementia with Lewy bodies
  • Mixed dementia
  • Frontotemporal dementia
  • Creutzfeldt-Jakob disease
  • Normal pressure hydrocephalus
  • Huntington’s disease
  • Wernicke-Karsakoff Syndrome

Dementia Caregiving Statistics

While it may depend on the type of care that they provide, caregivers often put themselves at a great risk by taking on the responsibility of supporting their loved ones. We have all heard the stories about it; co-workers barely meeting deadlines because of caregiving duties, people have even left their jobs to fulfill the role full-time, or neighbors leaving their homes to move in with loved ones. It is not an easy feat and it requires more dedication than anyone can ever really understand.

Dementia caregivers are no stranger to this circumstance. In a study released by the Alzheimer’s Association, more than 15 million family members and friends have provided 18.1 billion hours of unpaid care to loved ones with Alzheimer’s and other dementia in 2015. The economic value of all this was worth over $221 billion. Moreover, 38-percent of dementia caregivers have shared that they have been doing the work for six years or more. When a person takes on a responsibility this big and it lasts this long, it is bound to have negative effects on his or her well-being.

As cited in the same study, caregivers to dementia care recipients are 3.5 times more likely to say that the greatest consequence of the task is that it creates or aggravates their own health problems. Inevitably, these caregivers do not get to walk away from the experience unscathed. Physically, emotionally, financially, socially, or mentally, dementia caregivers will have to face some type of health problem during or after the care.

Lastly, and perhaps the most devastating discovery is that people caring for their loved ones hospitalized for dementia are more likely to pass away the following year, even after accounting for the spousal caregiver’s age.

Gender Differences in Caregiving to a Spouse with Dementia

Traditionally, caregiving is perceived by the majority as a woman’s task. This may be because of her nurturing nature or because of the traditional gender roles in society. However, the perception and behavior of society is rapidly changing. As seen in Bob and Ruth’s story, men are also becoming increasingly open to caregiving.

Gender Differences in Caregiving among Family – Caregivers of People with Mental Illness, a study published last year, attributes the growing change to longer life spans, more women taking on jobs outside the home, and smaller families. Similar to the reasons that women have in assuming the role of caregivers, men are driven to assume the responsibility by a sense of affection, commitment, and family responsibility.

Unfortunately, research that focuses on this subject is still quite limited. Most studies still pay little attention to male caregivers and maintain focus their female counterparts.

couple(Photo Credit: Pixabay)

Redefining Marriage

Marriages take the biggest hit when it comes to dementia. Perhaps, this is might be one of the biggest tests to “in sickness and in health.” Imagine slowly watching partner forget about a life that you had built together over the decades. Not only that, imagine feeling angry at the whole situation and wishing it was all over, then immediately being consumed by the overwhelming guilt of even entertaining the thought. This is the reality that many dementia caregivers face on a regular basis.

Physically present, but psychologically absent—this is how Pauline Boss Ph.D. describes how spouses can change when dementia takes over in her NextAvenue article entitled, For Caregivers of Spouse with Dementia, a Redefinition of Marriage. For many spousal caregivers, dementia has turned their married lives into an abstract relationship that feels like “living with a stranger” or “loving half a person.” It is no longer about building and maintaining a perfect relationship. As Boss puts it, it becomes pushing to make the relationship good enough.

We get a further look into this through John R. Smith’s How to Care for a Spouse with Early-Onset Alzheimer’s. Just in his early 40s, he has become the primary caregiver of his wife whose health condition is so advanced that she has lost the ability to brush her teeth, bathe, or even remember his name.

One striking point in his account is how spousal caregivers will feel a unique kind of isolation. When your spouse could barely remember your name, how can he or she truly give consent to intimacy? Despite it being a taboo in some social circles, sex is one of the most basic needs of a human being. Dementia can and will take that away in marriages because, as Smith’s therapist puts it, it will start to feel like date rape.

The Importance of Self-Care

In the chaos, success, and emotional turmoil that come with caregiving for a spouse with dementia, caregivers can easily neglect their own lives. In their minds, their spouse’s needs become the primary concern. However, prioritizing their own care concerns and needs is and will always be important, and they should not feel guilty for it.

Spousal caregivers, especially those handling cases as consuming as dementia in their own homes, can feel as if anything that takes their time and attention away from their spouse is not worth the thought. In some cases, taking a break could even feel as if their being selfish and spending the money on anything that they want feels like a substantial waste of limited resources.

But taking care of themselves does matter immensely. In Smith’s case, he stopped eating properly because he dedicated most of his time and their resources caring for his wife. He ended up losing weight, and every time his wife would stumble and fall, he would have trouble picking her up.

Your Concerns and Emotions are Valid

It has been said countless times before, but let’s reiterate: the quality of your care depends on how much you care for yourself. To the caregiver reading this, your health matter just as much as your spouse’s, so take the time to safeguard it.

As stated above, most caregivers learn later on that their own health concerns are aggravated by the responsibility of caring for their spouses. Stop, and reevaluate if you have enough saved away for that. The different types of long term care facilities may vary in prices, but none of them come cheap. Bear in mind that preparing yourself for the long term care costs you might have to face is all right.

Also, taking the time to continue doing what you love to do is not just acceptable but necessary. Maintaining good health by eating right (even if it is a little more expensive) and exercising can help you handle caregiving so much easier. Keeping your mind and your body in shape will make you a more effective caregiver. A strong body will help you handle the physical demands of caregiving, whether it is heavy lifting or working longer hours. A sound mind will help you handle the emotional roller coaster that come with it.

Lastly, but just as vital, remember that it is okay to ask for help. You are human. Exhaustion and frustration will come, and there will be times when you feel like you are filled to the brim. When this happens, know that those emotions are valid and that they do not make you a horrible spouse. Just ask for help from the people you trust the most. It may be from your children, other family members or even your neighbors. If budget permits it, the help might even come from a hired extra pair of hands.

Author Bio:

Samantha Stein is an online content manager for ALTCP.org. Her works focus on key information on long term care insurance, finance, elder care, and retirement. In line with the organization’s goal, Samantha creates content that helps raise awareness on the importance of having a comprehensive long-term care insurance plan not just for the good of the individual but for the safety of the entire family.

 

Leave a comment

Filed under Caregiving, Dementia, Guest Blogger

Combating Dementia with Improv


The Highest Results Of Education Is Tolerance: Helen Keller

Dementia and Improv; two words you don’t normally associate together.  That did not hold

23

Cathy Braxton & Tami Neumann from The Silver Dawn Training Institute 

back Tami Newman and Cathy Braxton from the Silver Dawn Training Institute from developing a cutting edge communication tool using Improv to help all of us learn how to community better with someone who is suffering from Dementia.

Dementia Raw is “shining a spotlight on unique ways to communicate with people affected by dementia.  It’s unscripted, it’s unconventional and its unapologetic training that equips you to handle everyday challenges as a caregiver.”

It goes without saying that communication is the key to healthy relationships.  Learning how to communicate with a family member, friend or client who has dementia is equally as important. Silver Dawn Logo_PRThrough their Silver Dawn Training Institute, Tami and Cathy have created
an on-line and in-person certification program that will help professional caregivers and family caregivers alike, learn how to better communicate with those affected by dementia.  To learn more how you can become a Certified Dementia Communication Specialist  simply click here! 

Don’t just take it from me; listen in to this episode of “Healing Ties”  and learn how Tami and Cathy are creating “Healing Ties” all around us.  “Healing Ties” is a part of the Whole Care Network.

 

 

Leave a comment

Filed under Alzheimers, Caregiving, Dementia

I’m a Teenage Caregiver: Now What?


“Education is what remains after one has forgotten what one has learned in school.”       Albert Einstein

aacy_logo-for-webNot every child gets 18 years of childhood. There are an estimate of 1.3 million caregiving children ages 8.-18 years old in the U.S.*  We often think of Caregiving as a role solely for adults. Child caregivers are a hidden, vulnerable population in the US, sacrificing their education, health and childhood while fulfilling roles and responsibilities beyond their years.  The risk of underachievement and high school dropout increases for teenagers who end up taking on the role as family caregiver.

When child caregivers are recognized and supported, their lives change and they learn that they are not alone. The American Association of Caregiving Youth of Palm Beach, County (FL) was developed by Connie Siskowski, RN, PHD and is the first US program to support the hidden population of child caregivers.   Through a variety programs to help young caregivers and their families, the American Association of Caregiving Youth brings the issues facing young caregivers and their families to the forefront.

Don’t just take it from me, listen in and learn how Connie Siskowski and American Association of Caregiving Youth is creating Healing Ties all around us!

To learn more about the American Association of Caregiving Youth and the upcoming Caregiving Youth Institute conference on Thursday, April 27th in Boca Raton, Florida simply click here! 

Leave a comment

Filed under Caregiving, Youth Caregiving

The Essence of Music Therapy


Where words fail, music speaks. Hans Christian Andersen

I have to be  honest, I’m a frustrated singer.  Oh, I’ve tried to sing in a chorus and of course, just like you, I’ve sung a few tunes in the shower, loudly I might add!  Music is the essential human experience and Marlon Sobol has a passion for music. As a music therapist, Marlon’s passion for music transcends, staff, residents and administrators alike.

As Manager of the Music Therapy Department at Schnurmacher Center for Rehab and Nursing in White Plains, NY, Sobol implements programming that include drumming, improvisation, dancing, bell chiming,song writing, singing, anmarlon-still-6-color-1d listening with verbal processing to meet the clinical and cultural needs of the facility’s in house and local community.

According to Sobol, “residents spend an average of 5 to 8 hours in front of a TV which is not good for anyone.  Music alleviates  agitation and encourages moment. And music is the path in the wilderness of dementia.”

Now Marlon has created a program called “Keep On Moving TV for Seniors” so caregivers and facilities will have an “easy to access resource”, that will greatly enhance the quality of life for all of our later years.  Listen in and learn how Marlon is creating “Healing Ties” and changing lives through his music. The rhythm is going to get you!

To learn more about “Keep On Moving TV for Seniors” and to support Marlon’s work visit:   https://www.generosity.com/fundraising/keep-on-moving-tv-for-seniors–2

Marlon Sobol’s work as both musician and music therapist have been featured in “DRUM!”marlon-still-3-color-1 Magazine; in “Preserving Your Memory” Magazine;  in the Journal News, and on Armand Dimele’s, “The Positive Mind,” and NPR’s “Soundcheck” with John Schaefer. 

 

2 Comments

Filed under Caregiving, Music Therapy

Is There A Connection Between Dementia and Dirty Air?


Today we welcome a contribution from freelance writer  Jess Walters to “The Purple Jacket”

Why Caregivers Should Monitor Air Quality

Caring for a loved one is a heavy burden, and you’ll want to do the best you can for them. Some of the duties you will perform as a carer are quite typical, such as feeding, shopping and cleaning. However, there are other less obvious things to consider when looking after someone. A topic that isn’t usually at the forefront of people’s minds is the quality of air.

Scientists believe that there may be a link between polluted air which is high in magnetite, and dementia. People with dementia have elevated levels of magnetite in their brains. Therefore, it is vital that the air is clean for yourself and your loved one. You can do this by using a portable air purifier, and by purchasing high quality filters for your HVAC, which will screen smaller particles in the air.

A silent buildup of tiny magnets in the brain sounds like science fiction, but researchers say it’s reality for adults who live in cities, thanks to air pollution. Now, they’re trying to find out if high levels of magnetite, a particle found in dirty air, can cause Alzheimer’s. They’re concerned because Alzheimer’s patients also have lots of magnetite in their brains. It’s not yet clear if elevated brain magnetite levels are a cause or an effect of dementia, but magnetite is hardly the only air pollutant, and there’s no question that cleaner air is better for your health. Here are some tips for clearing the air for yourself and your parents.

Keep an eye on local air quality

Local industries, pollen, dust storms, and wildfires can create health hazards for seniors, especially those with allergies, asthma, and lung diseases. Most local weather forecasts now include information on daily air quality, including the types and amounts of pollutants such as ozone and dust. You can also visit the Environmental Protection Agency’s real-time national air quality map at AirNow, enter your zip code or and see local air quality and tomorrow’s forecast.

When the pollutants and pollen are high, it may be best to stay indoors or at least avoid exercising outdoors. You may be tempted to put on a mask and get on with outdoor activities despite the dirty air, but health experts warn that thick, tight-fitting masks that can filter out pollution particles may also make it harder to breathe. Read the rest of this guide here.

“Jess Walter  is a freelance writer and mother. She loves the freedom that comes with freelance life and the additional time it means she gets to spend with her family and pets.” Jess Walter <jesswalterwriter@gmail.com>

Leave a comment

Filed under Caregiving, Dementia, Guest Blogger