Archive for the ‘ Resources ’ Category

When I became a Family Caregiver, one of the first things I noticed about caregiving was that many sacrifices are made in order to provide effective and compassionate care to our loved ones.  I also noticed that many Family Caregivers were providing this care alone, thereby compromising their own wellness.  In time, the “cost” of caregiving solo is evident physically as well as emotionally & socially.  Some ways to prevent this downslide is to reach out for help, to put to good use the resources that exist, and to assert our need to take care of ourselves.

To this end, Sherri Snelling, renowned caregiving expert, author, advisor & voice for Family Caregivers, writes about an affordable, practical way to bring Peace-of-Mind to a caregiver’s world.

To help Family Caregivers take a break – and to set them on their way to wellness – CareLinx is offering                        4 hours of FREE IN-HOME CARE!                        [Scroll to the end for details!]  Thank you, CareLinx!

Make today the first day of a better caregiving tomorrow!

Thank you, Sherri, for your insights and support of Family Caregivers!

THRIVE not survive


Are You Thriving or Just Surviving As a Caregiver?  The Peace-of-Mind CareLinx Offers Makes In-Home Care the Answer

by Sherri Snelling (see short bio below)

In the U.S. today, more than 65 million are playing the role of family caregiver. But as many caregivers know, this role is a marathon not a sprint, and survival – or, better yet, thriving as a caregiver – means finding the best help at the best price.

While AARP reported that 89 percent of Americans over age 65 want to remain at home as long as possible, the Centers for Disease Control (CDC) found 7.6 million Americans who have a chronic illness or have been discharged from a hospital after an acute illness are being cared for at home by a family member. Often, caregivers suffer from burn-out trying to juggle all the responsibilities of family, career and caregiving without getting a break for self-care.

The solution is to seek help but there are two hurdles for most caregivers: 1) The options for in-home care are numerous so it’s time-consuming and difficult to know where to find a trusted service; 2) Often caregivers find their parent is unhappy with the professionals being sent from an agency and so an endless parade of in-home caretakers becomes another challenge to caregiver peace of mind. Finding that perfect match that offers quality in-home care at an affordable price is a challenge, but it can be done.

One company has the answer.  CareLinx emerged about five years ago and has become the nation’s largest online caregiver marketplace. Building a professional caregiver network of 150,000 serving 1,500 families a month in the top 50 metros across the U.S., CareLinx offers family caregivers three key things when it comes to in-home care: Confidence in trusted quality care, cost savings and most importantly choice.




Perhaps the most unique aspect of the CareLinx service is that both the families and the care professionals get to choose each other. This partnership begins online at the CareLinx site. If a family caregiver goes through a traditional in-home care agency, the family can provide criteria but typically the agency will send the care professional that is available, not necessarily the best match. At CareLinx, the choice is yours – for the family caregiver, the care recipient and the professional caregiver.

CareLinx acts like eHarmony to find the perfect professional caregiver match for in-home care whether it’s meal preparation, light housekeeping, bathing and dressing, help with mobility or medications and companion care. If your mom only speaks Spanish, likes Mexican-style cooking and needs help bathing which needs to be a female caregiver, CareLinx offers families the choices in the area to fulfill those specific needs.

The family can review the backgrounds of each professional, check their hourly rates, coordinate a telephonic or videochat interview and decide which professional caregiver is the best fit. And, as opposed to traditional agencies who typically require a 3-hour minimum for the care service, you can have a CareLinx professional come for just an hour if needed. CareLinx also offers a Care Advisor via a toll-free number. Family caregivers who have questions or need guidance can get this extra help.

At the same time, the care professionals have a choice as well. CareLinx becomes the professional caregiver-equivalent of LinkedIn with a platform to connect with clients easily. CareLinx also handles all the time-consuming paperwork – including invoicing, payments, handling taxes – and provides the care professional with liability insurance.

In the end, families and the care professionals come together through mutual agreement and CareLinx reports this results in lower turn-over rates and higher satisfaction for both families and the professional caregivers.

CareLinx Mobile



For many family caregivers, one of the drawbacks to bringing personal care help into the home is the issue of safety and security. The horrific headlines in the news about elder abuse, identity theft and other “care scares” is enough to make some family caregivers take on the extra 20+ hours a week and perform the care needs themselves. This can lead to stress and burn-out for the family member.

CareLinx sets itself apart by giving families the peace of mind they need. CareLinx care professionals are backed by liability insurance from Lloyds of London – what CareLinx calls its $4 million SafeGuard Policy. In addition, CareLinx has done most of the legwork for caregivers – performing exhaustive background checks, ensuring professional credentials for care workers and requiring ongoing quality reports from its clients.

In addition, CareLinx professionals check in with the family members daily to let them know important activities of their care service. The CareLinx professionals send photos and other data via smartphone communication with clients. It’s peace of mind to know dad ate his lunch with no complaints or mom was able to get out and walk a bit with help. The family member gets real-time updates right on their phone.

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Cost savings

Most importantly, CareLinx saves families money while paying professional caregivers a higher wage. Traditional bricks and mortar in-home care agencies have retail stores with overhead costs and tend to charge 50-150 percent to cover these costs while keeping professional hourly rates low.

With CareLinx, families save 30-50 percent because CareLinx is an online platform to find your care professional. No stores. No large marketing budgets. In addition, CareLinx provides rates next to each professional listing showing the professional’s credentials to justify the rate and typical rates for that service in the local area. Armed with that information, families and care professionals negotiate the rates between themselves – CareLinx does not get involved.

On average families across the nation can spend on average $45,760 per year for in-home non-medical care according to Genworth’s annual Cost of Care Survey. Saving on these costs helps families who often struggle to pay for personal care services not covered by Medicare (Medicaid may cover some services but it varies state to state).

CareLinx only adds a flat 15 percent fee allowing it to save families overall costs and letting professionals negotiate the wage they feel is fair.

We’re entering a new era of caregiving support and services. CareLinx is one of the leaders that provide on-demand, safe, affordable in-home care choices – the new way for family caregivers to ride the silver tsunami of having older parents at home who need our care.

Special offer for Caregiving Cafe Readers:


Click on this link by July 31, 2016: CareLinx and receive 4 cost-free complimentary hours of in-home care from CareLinx.


About Sherri Snelling

Sherri Snelling is CEO of Caregiving Club and author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care and she writes on caregiving for PBS Next Avenue,, USA Today and Huffington Post. She was the chairman of the National Alliance for Caregiving and has served on advisory groups for the White House Middle Class Task Force on Caregiving, CMS, AARP as well as for companies such as CareLinx.

BLOG Sherri Snelling


Disclaimer: Sherri Snelling is a paid advisory board member of CareLinx. While her strategic counsel, spokesperson and other duties are paid by CareLinx, Sherri Snelling is not paid for clicks or links such as an affiliated marketing arrangement. While Sherri Snelling provides her opinion of CareLinx, she does not guarantee the quality and satisfaction of the CareLinx services experienced by individual CareLinx client and thus, disclaims any liability that may result from your involvement with CareLinx.













(From the beginning, my sister, my brother and I have focused on our beloved carees: first our father, then our mother.  I believe that this is the key to successful caregiving.)

The conversation at Caregiving Cafe support group this past week gravitated toward siblings who don’t help with caregiving for aging or fragile parents. Unfortunately, this is a common situation that is hard to comprehend and harder to live with.  Despite the difficulties that surface, however, solutions DO exist!

Unresolved issues from the past – perhaps filed away in our memory bank so securely that we may have forgotten about them – have a way to sneak up on us and make us re-live those moments of intense emotion and pain.  Or perhaps the wounds never healed at all and remain fresh with hurt, anger or resentment.  They say that we are the sum of our experiences, and those experiences may have steered us away from the closeness and mutual appreciation that family once provided.  As we lay our course through adulthood, we create new associations with whom to travel, adjusting them as life moves us from place to place or from circumstance to circumstance.  Family ties can be weakened or broken unless diligent care is taken to preserve and to strengthen them over years of change.

The initial presumption would be to count on siblings coming together to tend to parents as their health declines.  Not necessarily so!  For the reasons above and for many others that remain inexplicable, the sad truth is that many siblings are left caring for one or two parents on their own.  Some are fortunate enough to get support from 1 or 2 brothers or sisters, with whom care is reliably coordinated.  Many family caregivers, however, cannot count on this support.

So what can a family caregiver do to enlist the help and cooperation of siblings?

Several attendees talked about how they had dealt with their less-than-helpful siblings.  As one of our resourceful caregivers said, she decided to spend her energy on managing the tasks at hand rather than to continue to envision a “perfect” scenario where her sibs would lend a hand – and be disappointed by the reality that they weren’t. She decided to take charge & to coordinate efforts with the sister that did help, rather than to continue to ask for assistance that never came.










[This coordinating of help is what being the Caregiving CEO is about!]

Another family caregiver got the go-ahead from her father to hire a caregiver as needed and to purchase items that helped with his care.  She was lucky that another sibling spoke up for her when justification was required by the rest of their brothers and sisters.  She decided that whether her sibs liked the idea or not, she was okay with that.  It was their problem if they didn’t agree, not hers.  I would add that if someone is not helping with caregiving and is simply criticizing without any basis, then he/she has no understanding of this particular caregiving situation; therefore, he/she has no say in the matter.  I might even suggest that the caregiver ask the critic, “Would you like to do it next time and show me a better way?”

Other caregivers had siblings who paid for caregiving needs when they couldn’t be or chose to not be there in person.  While the ideal is for all family members to come together for the sake of the loved one, reality can make this a challenge.  A phone call or a letter, funds to pay for a sitter / equipment / supplies / respite / groceries / medications are welcome alternatives.  The vision of a perfect caregiving situation can do more harm than good, especially to the family caregiver.  It is best to be realistic and to accept the help that is given, instead of measuring how this help compares to an unattainable ideal.

I encourage family caregivers to ask for help from relatives, friends or neighbors without expectations.  [Have your list of tasks handy for when they say yes or offer to help!]

But as a fellow caregiver pointed out, we don’t know what our relatives / friends may be dealing with that keeps them from helping.  Whatever the reason, it behooves us to accept – not necessarily to like, but to accept – the fact that they won’t help and to create a new “caregiving family” who will support us in caregiving.  Maybe not easy, but doable…and necessary.

Let us also forgive those whom we feel have not supported us when we needed them.  The animosity or exasperation that we may feel will eat away at us over time and make it a burden with which to contend. Forgiveness allows us to move past hostility, indignation and suffering.














From: Forgiving the Undeserving

“…a bitter spirit, like cancer, penetrates every part of our life.  Anger and resentment are symptoms that cannot be pushed away and ignored.  They spill out, harming relationships and leading to risky decisions.

Withholding forgiveness may feel like we are punishing the offender.  But people cannot take revenge on one another without destroying themselves.”

Ephesians 4:30-32


We have to work with what we’ve got.  Let’s focus our energy on finding ways to manage our situations, using resources, creating a care team that supports us, and moving forward.  Let’s not allow the frustration / anger / hurt that stems from lack of familial support to interfere with accomplishing what we need to.  It is emotionally draining. Use it instead as fuel to find a path toward your goals!  [If it helps…remember that what goes around, comes around!]

We, as primary family caregivers, are responsible for the care our loved ones receive.  We do the best we can under the circumstances.  Give yourself credit for ALL that you do & have confidence in your abilities!


Below are some articles about siblings & caregiving:

Getting your siblings to help with caregiving

Sibling Rivalry: The Challenges of Caring for Elderly Parents

Out-of-Town siblings may feel shut out of caregiving

What to do when siblings can’t agree on a parent’s care needs

Top 3 Excuses from Siblings Who Don’t Help with Caregiving

“Each caregiver has to know when to fight, and when to give up the battle and move on. There is no right or wrong time. It’s up to you.”    Carol Bradley Bursack



In-home care services












Caring for our loved ones when they have a chronic condition, when they require extra attention as a result of advanced aging or when a family caregiver needs respite can lead us to consider hiring home care help. How do we select home care help and make sure that our loved ones will continue to receive compassionate, respectful and appropriate care?

Carol Marak, an older adult and family caregiver advocate, shares some tips to help families find and select competent and supportive home care.

Thank you, Carol, for your great tips!



How to Select Home Care Help

Adult children and seniors must learn how to read the ratings of home care agencies prior to hiring a home helper.

The CMS, Centers for Medicare and Medicaid Services, created the Five-Star Quality Rating System to guide consumers when comparing and selecting a home care agency.

Most states do not require home care agencies to have a license or to receive certification. But if a home care agency offers home health, like nursing care, then the company must follow applicable laws, regulations, and state compliance issues.

Even though you’re hiring for in-home care and not home health care, CMS suggests that consumers should follow the same requirements and ask questions designed for the Five-Star Quality Rating System. Learn how Medicare measures the quality of data. 


Check the Qualifications of the Caregiver Agency

Here’s a list of the questions to ask a home care agency when you are ready to hire a professional caregiver.

1.  Does the agency have a state license? If one exists, request to read and review it.

2.  Does Medicare approve and certify the home care firm? Remember, only home health care agencies, the ones offering nursing care, will receive Medicare certification.

3.  How does the care company hire and screen the staff?

4.  Ask for client references. Ask for a list of physicians, discharge planners, and geriatric care managers who have worked with the agency.

5.  Ask health care professionals, family members and friends for professional caregiving recommendations.

6.  How does the care company train the caregivers?

7.  Does the agency staff receive continuing education? If so, what kind of training?

8.  Are the staff supervised? By whom?

9.  What factors evaluate the home care helper?

10.  What is the improvement program?

11.  Do the agency’s employees seem friendly and helpful? Make sure you feel comfortable with the agency’s representatives.


Caregiver Training










Questions to Ask about the Caregiver

1.  Does the caregiver/home helper have a proper attitude?

2.  Is the home help aide friendly?

3.  Are you comfortable with the caregiver?

4.  Is the care aide certified?

5.  Is the caregiver insured?

6.  Does the assistant receive ongoing training? If so, what kind and what topics?

7.  Does the helper receive continuing education?


Types of Services Given by a Home Care Company

1.  Will you receive a written care plan before service begins? Make sure the doctor gets involved.

2.  Obtain a copy of the patient’s bill of rights.

3.  Will a nutritionist, dietitian, counselor, therapist or another specialist be referred if needed?

4.  How does the care provider include your family members and health care providers?

5.  Are limits set on the types of tasks performed?

6.  When will service be provided? Is care available round-the-clock, when needed?

7.  What procedures are in place for emergencies?

8.  How are problems addressed and resolved?

9.  Whom can you contact with requests, questions or complaints?

10.  When can services begin?

After you hire a home care company, stay on top of the services they give and monitor closely. If concerned, discuss it immediately with the agency or home health aide.


About the author

Carol Marak is a contributor for the senior living and health care market. She advocates older adults and family caregivers by writing on tough topics like chronic issues, senior care and housing. Find her work at and and contact Carol on LinkedIn and












Effective communication is an essential skill in caregiving.  While we all write or speak to one another, we don’t always convey our intended message to others. All too often, family caregivers tend to refrain from coming forward with their requests for assistance.  Most likely, they have plenty to say – in their mind – but never get around to verbalizing their needs.  This lack of communication not only keeps well-intentioned and willing helpers from chipping in, but family caregivers can grow increasingly discouraged by the apparent lack of concern from family and friends.  At other times, our perspective and the language that we use to express ourselves may sideline what we truly feel or may mask the real issue that we need to address.

Joan Craven writes about interactions among people and presents practical steps to get our message across.  In her book, “GOT IT! 21 Communication Tips for Busy Impatient People,” Ms. Craven reminds us that we “are the boss of ourselves.”  We can choose to react negatively or we can choose to act in a constructive way to move past an obstacle.  She stresses how important it is that you “Think before you speak, be thoughtfully honest, and speak to others as you would a very dear friend.”  Effective communication allows you to “build relationships,” inviting partners to walk alongside you.


GOT IT! - Joan Craven













“GOT IT!” is a concise and valuable book that family caregivers can use as a tool to build a supportive care team or to communicate important health issues to medical professionals.  With clear tasks and boundaries, everyone involved can focus on the chosen job and avoid misunderstandings or mistakes.  It also serves as a reminder that each one of us has the ability to choose the way we think – hopefully, it will be a belief system and proactive thinking that allow us to move forward beyond all obstacles.

I have highlighted below some of the tips in GOT IT! and hope family caregivers put them to good use.

*  Speak up – people cannot read minds

*  Use facts while using “I” messages, rather than using accusatory “you” statements  (You always…)

*  Be a good listener & focus on the person with whom you speak

*  Be kind to yourself so you can be kind to others

*  No could have & should have

*  Model how you want to be treated and what you will / will not tolerate

*  Set realistic expectations and achievable goals

*  You don’t need to do it all

*  Do what you can at the moment without guilt

*  Family caregivers are in charge of their own time – surround yourself with supportive people

*  Don’t procrastinate

*  Don’t worry about things you cannot control – let go

*  Don’t complain – choose words carefully, be positive




About the author

“With over 25 years of experience in the communications industry, Joan Craven has seen first-hand the devastating consequences of poor communication and the transformative benefits of strong interpersonal and organizational communication.

She believes that good communication is the ability to build strong relationships so people trust you, respect your opinions, listen to you and want to understand your point of view.”



Disclosure: Joan Craven graciously sent me her book GOT IT! in hopes of providing family caregivers with an additional resource.  I encourage them to seek out the resources that will help them to better manage their caregiving and am happy to share GOT IT! with them.

Evolution of a Family Caregiver

YES...I am the BOSS!








The past 7 years flashed before my eyes at our most recent Caregiving Cafe gathering in Austin.  I was delighted to see some new faces and, as always, equally so to see the familiar ones.  I am proud of each and every family caregiver who attends our support-group-with-a-twist, for this means that they are reaching out to find peer support, and seeking out resources and information that will enable them to be better, more effective caregivers.  They also put self-preservation into practice (physical, emotional, social & identity, as we are more than family caregivers), invest time in their own wellness, educate themselves about the conditions with which they deal, and learn about tools that will help them to manage it all.

As some of the caregivers spoke about their complex situations, I recalled the times in my early years when I felt I was being carried by the ominous undercurrent of a healthcare Amazon.  I followed procedures that everyone else involved in my husband’s health knew about, except for me.  I was only skimming the surface of this broad and deep river of forms and regulations.  While struggling to stay afloat, a fleet of larger vessels loaded with the other responsibilities that I had momentarily pushed aside to catch my breath, plus the new ones that had been added as I took on the new role of caregiver, quickly approached.  Sink or Swim?











I was moved by the compassion and support that the family caregivers offered each other.  What they had learned through trial and error, they shared in order to save others time and frustration.  I saw a wonderful coming together of separate individuals that now share a common destiny: caregiving.  I also saw how these selfless and devoted persons have grown in the few months that we have known each other.  They were strong when they came to their first meeting;  they are stronger now!  The information and experiences that have been shared by the group have helped many to develop ways to create a life that is more manageable despite the demands of caregiving.  Family caregivers supporting family caregivers.  “A sight for sore eyes to see!”

I encourage family caregivers to seek and to use local and online resources, to take charge of their caregiving by approaching it like a project for which they are the “Chief Caregiving Officer” [CAREGIVING AS A PROJECT], to use strategies that will enable them to succeed [BASIC STRATEGY], and to join support groups locally and online.

I no longer feel like I’m being dragged by the caregiving undercurrent, nor do I feel lost or overwhelmed.  I chose to look for those who could help me to do this job effectively so that I could focus on my husband and on my mother.  I chose to accept my role as a family caregiver, to create a life that is meaningful and rewarding and to encourage other caregivers to do so.  I chose to take a DEEP breath, to be proactive in my search for answers, to give myself credit for my abilities and to believe that I can do a good job.  In time, I learned more about caregiving and saw that many individuals did not always understand it.  I chose not to lose confidence in myself when people disagreed with my decisions.  I did not feel I needed to justify my actions or to try to convince others that those actions were appropriate.  I politely said that they worked in our specific circumstances and moved on.  You can’t force others to change the way they think, but you can change they way you think (and react)!

Caregiving can happen to anyone at any time.  When the time comes, how one approaches this great responsibility makes a huge difference in how well it is managed. Notice I didn’t say “controlled.”  Caregiving is truly like a river: constantly changing.

Set yourself up for success by: 

— Searching for information and resources

— Recruiting people who will help out as needed, whether it’s with a task or by lending a non-judgmental ear

— Joining support groups – each gathering has a different “feel” and can serve to gain different types of support, information on specific illnesses or conditions, coping skills, resources, fellowship, etc.

— Investing in your own well-being – a sick, exhausted or burned out caregiver is not a compassionate or effective caregiver.

— Choosing to swim!













I am thrilled to be participating for the first time in’s Holiday Progressive Holiday Blog Party 2014!  What a golden opportunity to share insights, to learn tips, to “meet” and to support family caregivers everywhere!  (Then again, leave it to Denise Brown to dream up and implement fantastic ideas that enhance and strengthen the community of family caregivers!)

My personal mission at has always been to connect family caregivers to reliable information and resources.  Who better to provide tried-and-true bits of wisdom than another family caregiver?

In a nutshell, the Holiday Progressive Blog Party invites family caregivers to visit blogs that have been created by family caregivers or by groups that support them. Caregivers are encouraged to leave a helpful tip, a polite comment or well-wishes and inspiration.  It is a way to bring together family caregivers across the globe and to gain perspectives that may help in caregiving.  That’s it!

So feel free to peruse through and through this blog.  You will find a directory of links to trustworthy websites, organizations and information that will show you how to manage caregiving tasks, to deal with stress and negative emotions, and to take good care of yourself.

Thank you for visiting!  I look forward to learning, sharing and fostering mutual support – it takes a village to be a successful family caregiver!

All best wishes,


(Family caregiver for my husband, who lives with CRPS; long-distance caregiver for my mother.)


Thank you









I would like to thank all of the family caregivers who contributed a guest post to The Caregiver Diaries this November in recognition of Family Caregiver Awareness.

Bobbi Carducci, The Imperfect Caregiver / @BobbiCarducci

Richard Kreis / @kreisr1


Gilly Cannon / @bringingcomfort

Trish Hughes Kreis / @robertssister1

I am also grateful to Connie Siskowski, RN, PhD, (@AACYorg) for speaking up for a group of caregivers who is rarely seen or heard: caregiving youths aged 18 years and under.  Indeed, caregiving knows no gender, age or ethnicity.  It can and does happen in all families across the globe.  It is my hope that by reading and learning about caregiving, non-caregiving persons will prepare themselves for the task and be more inclined to help family caregivers they know.  I hope that family caregivers will use the local and online resources that can help them manage the varied tasks they have undertaken and make time to take care of themselves, as well as to nurture their own interests.

Furthermore, I would like to thank AGE of Central Texas (@austinelderly) for collaborating with Caregiving Cafe to recognize and to reach out to family caregivers.  AGE served over 2200 caregivers in Central Texas in 2013.  It continues to provide them with valuable resources as well as to support seniors and their families, “tackling the challenges of aging with expert solutions.”

As I see it, the purpose of awareness is to educate with the aim of putting that new knowledge into practice in order to make life better.  Ignorance can be a dangerous thing when it comes to health and wellness.  (I can’t help but sometimes wonder if my husband’s CRPS would have advanced as rapidly – the most aggressive case all of his doctors have ever seen – if those who treated his yet undiagnosed condition and unexplained pain would have known that he had CRPS and had avoided ice therapy. We later read that ice therapy tends to make this painful disease worse and hastens its spread.)

When family, friends, neighbors, organizations, companies / employers, medical professionals, social workers and all devoted to preserving health and wellbeing work together cohesively to support family caregivers – and as a result, their carees – the entire community benefits.  Having a more manageable schedule, achieved by delegating tasks to willing helpers and using local and online resources, allows the family caregiver to take breaks here and there.  This can lead to less stress and anxiety, more energy and motivation, reduced chance of burnout, fewer mistakes that can result from sleep deprivation or state of overwhelm, better health, better sleep and better caregiving.

For the estimated 50% of family caregivers who are currently employed full-time, better support translates into less absenteeism, increased productivity, better focus on work, and reduces expenses for the employer. This can be achieved through an open and honest dialogue between the growing number of employed family caregivers and the employer’s management team. It is by understanding the demands of caregiving – medical, physical, emotional, psychological – that companies will see the value of implementing a support system that helps family caregivers to succeed.  This begins with awareness.

Let’s move forward beyond caregiver awareness, then, and use the glimpses into this private world as opportunities to offer our help, empathy and companionship.  Let’s support family caregivers any way we can so that they may continue to provide compassionate and effective care longer.  One day, you may need a family caregiver or become one yourself.


When we think of caregiving, we usually picture an adult working long hours to provide loving care for a loved one.  According to many reports, the “typical” caregiver is a 49-year-old woman who is taking care of her 79-year-old mother.  Chances are that the family caregiver is also working full-time.  The story below will open your eyes to a very different caregiving scenario.

Thank you, Connie Siskowski, RN, PhD, for contributing this article.













In The Shadows of Our Lives

By Connie Siskowski, RN, PhD

“My dad isn’t working” was Eric’s only response – even with some gentle probing by a Family Specialist who is a licensed professional with the Caregiving Youth Project (CYP) of the American Association of Caregiving Youth® (AACY) which is headquartered in Boca Raton, FL.

Eric’s life changed suddenly when one day his dad fell from a building and sustained head trauma.  He now has the debilitating effects of brain damage.  Eric’s mom has asthma and had to go without proper medical attention.  He and his family have lived in fear that they would be split up, so he suffered silently – as did his grades – until the CYP came beside the family. Not even his guidance counselor was aware of the family situation!

Now the family has some new resources. Mom has medical care and asthma medications, and dad has the necessary medical equipment, including a wheelchair so he can spend some time outside.  Eric has learned that he’s not the only one whose dad is disabled and whose mom has asthma. He has someone to talk to and knows his family will not be split up.  He looks forward to some time away at the CYP overnight Camp Treasure.

In Palm Beach County, FL since 2006 there have been more than 750 middle and high school students who have been enrolled in the CYP.  In their own words, these caregiving youth consider themselves to be the “lucky ones.”


Caregiver Youth Project









They are among the more than 1.3 million children in the United States, ages 8-18 years, who serve in a family caregiving role (Young Caregivers in the US, 2005). The caregiving responsibilities children have, especially when they are in single parent or grandparent homes, pretty much mirror the work and the ramifications experienced by adult family caregivers.  Those adults that are employed may arrive late at work, have absences and may even have to quit their jobs.  The “job” of a child is to learn; they may miss school, be late or even drop out. Or, similar to Austin Fisher of Carrollton, Ohio they may incur ramifications for graduation because of absences; in Austin’s case, it was to care for his mom with terminal cancer.

So why do caregiving youth in Palm Beach County consider themselves “lucky”?  The CYP is their unified answer.  With CYP support, they know they are no longer alone, have new resources and feel more confident in their caregiving responsibilities.  With a needs-driven approach for supporting student-caregivers, the CYP has provided computers for more than 165 of its enrollees with more being distributed as soon as they are obtained.  Some students have received tutoring even in their homes.  As a result their grades have improved. Others and their families have received much needed, and otherwise unavailable, respite.  They are achieving academically and growing personally – and, they are staying in school with a graduation rate >95%!

The CYP is the model program of the AACY, the only organization of its kind in the United States addressing the educational, emotional, social and physical issues affecting these youthful caregivers who provide care for ill, injured, elderly or disabled family members and who are shouldering responsibilities usually relegated to an adult.

As a partner with The School District of Palm Beach County, the purpose of the CYP includes reducing the barriers that interfere with a child’s ability to focus in school and to learn.  While the CYP helps to crumble the barriers with direct services in school, at home and out of school, AACY works to increase the adult, student, health care provider, educator and community understanding of the responsibilities and challenges caregiving youth face.

In school, CYP staff hold Skills Building/support groups and Lunch-and-Learn sessions that help its members to manage stress, depression, anxiety and isolation, meet new friends who share their challenges, find answers to caregiving questions, and help them to realize they are not alone in their family health situations and caregiving responsibilities.

CYP at-home programs link families with resources which may include access to medical care, supplies and equipment, assistance with food and financial issues as well as solving special health and safety needs including home repairs.

In every instance, CYP has helped to make a positive difference in the lives of this silent, vulnerable and hidden population of children – and their families.

In your daily life and in mine, there are visual cues to remind us that there are people who are homeless and hungry.  People in our family may have challenging illnesses; their journeys pull at our heart strings. Out of sight and out of mind, the work of caregiving youth and the challenges they face every day are behind closed doors…they are in the shadows of our everyday lives.

The more the barriers can be reduced or eliminated, the more that caregiving youth can reach their full potential, especially in the classroom.  Supporting caregiving youth benefits both the students themselves and society overall.  The ultimate goal is for every US child caregiver to feel valued and supported and that no caregiving youth drops out of school because of family caregiving responsibilities.


Caregiving youth dropouts











What are some things that a person can do to support a caregiving youth?

  • Be aware of  family health situations and the effects on the whole family, especially on children and their education
  • Know that parents & grandparents who are themselves overwhelmed may not realize the effects of family health situations on their children
  • Refer concerns about caregiving youth to the school nurse, social worker or guidance counselor
  • Foster relationships with community support services to strengthen caregiving families
  • Encourage caregiving youth to request help by calling their local information hotline
  • Advocate for caregiving youth with legislators, religious and business leaders, the public and in educational and professional groups
  • Take a proactive role – contact AACY about developing a Caregiving Youth Project affiliate with a local non-profit in your community.


Dr. Connie Siskowski









Connie Siskowski, RN, PhD  [Image]


More about the American Association of Caregiving Youth®

As a Florida based 501 (C) (3) non-profit corporation, the AACY began serving the greater Boca Raton community in 1998.  It was created by a dedicated and passionate group of businessmen, clergy and healthcare professionals.  Its work has evolved from a Robert Wood Johnson Foundation funded Faith in Action program to today where it addresses the needs of pre-teens, teens, families and professionals through education and awareness, research and direct services.  AACY collaboratively utilizes existing resources locally, regionally and nationally to effectively recognize and support the vulnerable and valuable role caregiving youth fill within the family, in the health delivery system and in an aging and diverse society.

For more information email, visit or call Dr. Connie Siskowski at 561-391-7401.


Crowded street









The US is home to 65.7 million family caregivers [Family Caregiver Alliance: Selected Caregiver Statistics] and yet, one cannot single them out.  They look like everyone else: they have no obviously distinguishing features that set them apart from “regular” non-caregiving people. They blend into all sorts of crowds – at work, among friends, at Church or Temple, at the grocery store – seldom revealing any clues about their “other” life.

What exactly is a family caregiver?

A family caregiver is anyone who is responsible for the care of a loved one who is advanced in age, chronically ill or disabled.  The caregiver could be a spouse, parent, child, sibling, relative or friend.  While people are likely to assume this great responsibility as a “relative” or as a “friend,” they also become “family caregivers.” Acknowledging this additional role is important because many resources that exist to help and to support “family caregivers” may go unnoticed by those who do not see themselves as such.  Their work, then, can become overwhelming, which in time can lead to stress, exhaustion or poor health.

Family caregivers become advocates for their loved ones. They are their carees’ voice when they can no longer speak for themselves.  Seeing themselves in this light, family caregivers can more confidently discuss treatment options or concerns with medical professionals.  There is no doubt about whether it is appropriate to ask questions or to mention observations.  It is a family caregiver’s duty to speak up!


Are you a caregiver?













What does a family caregiver do?

Everything and anything!  But not all at once!

When I stepped into the role of long-distance caregiver, I initially did a lot of researching about:

  • my father’s illness (multiple myeloma, renal failure)
  • treatments  (renal & cancer diets)
  • services (transportation, dialysis centers, home delivery of medications & groceries)
  • home care services
  • support for my mother (she had become Dad’s family caregiver)
  • rehab facilities (what they offered, how to pick a good one)

My brother and sister visited Dad in the hospital and rehab facility, helped him with grooming and personal hygiene when he became too weak to walk, and fed him.

Our mother took daily notes about all procedures, painful episodes, medications, treatments, observations and activities.  She remained at his side for the last 2 months of his life, keeping him comfortable, voicing concerns when she saw that he was not doing well and insisting on additional monitoring when his condition warranted it. She was a “family caregiver” in its true form without ever hearing the term.

When my husband became disabled, I used what I had learned from Dad’s experience.  I did my research once again and found ways to accommodate him so that he remained as self-sufficient as was safely possible.  This included finding appropriate furniture, electronic devices, utensils, foods, pill dispensers, mobility aids (canes, crutches, wheelchair and ramp), pillows, etc.

Dealing with paperwork was a new challenge.  Drawing a Will, Advanced Directives, Medical and Durable Powers of Attorney, finding the right health insurance plan, filling out forms for COBRA, for Social Security, for his Disability Insurance, and then providing yearly updates consumed quite a bit of time.  It was time well spent, however, as we ended up with great coverage and all agencies were very helpful when I asked for guidance. Medicare and Medicare Part D were another challenge that took time to comprehend.  I continually requested explanations and clarification (many many times) until I understood what the plans offered, and then selected the one that would cover the services that my husband needed then and in the foreseeable future.  I decided from the very beginning that if I was going to perform a “job” that I had never done before, I was going to educate myself by asking those who know about it.  This would not only make my job easier, but it would enable me to make informed decisions so that I could provide better care to my husband.

As his illness progressed, I looked for resources that could help him.  These included house calls by doctors and phlebotomists who would do blood work at home.  I even found out that Texas’ Department of Public Safety will come to your home to take a picture and to issue a Texas ID card in lieu of a driver’s license!  I also began organizing my husband’s 25 daily pills in a pillbox, cutting food into bite-sized pieces, picking up medications at the pharmacy and generally trying to keep him as comfortable as possible given his 24/7 pain.











Keeping track of medical records, doctors’ appointments, nurse visits, medical bills, prescription refills and medication approvals required organization and monitoring.  Journaling observations on the progression of the illness, the success of the medications and treatments, the emotional wellbeing of my husband, and making note of research findings and new FDA approvals of medications that could be discussed with the doctor serves to document events that may prove useful to the doctors in the future.

Then, there is the non-caregiving side of a family caregiver’s responsibilities.  These are tasks that were once done by the loved ones who now need care and can no longer do.  They include paying bills, errands, cleaning house, chores, lawn work, home repairs, driving kids or teens to and fro, volunteering, etc.  Let’s not forget that about half of all family caregivers in the US are employed.  While the tasks increase, the hours in the day become short.  This is when family and friends can offer help and when family caregivers need to graciously accept that help.  Not only will the result be a grateful caregiver, but the caree will derive the ultimate benefit of having a compassionate and strong caregiver by his/her side longer!

What have I learned from caregiving?

When my beloved father passed away on April 3, 2008, life became clear and simple for me.  His passing highlighted the truly important things that we can easily fail to appreciate as we rush through our hectic agendas. Life is about people.  Give them love and attention while we are all on this Earth.  Like “The Living Years” by Mike and the Mechanics says, “It’s too late when you die… I just wish I could have told him in the living years.”  My cousin asked why people wait for funerals to gather. Let’s show the persons who are dear to us that they are dear to us!  Actions, indeed, speak louder than words!












In caregiving, spending time with our loved ones is as important as carrying out all the required tasks. Spending time on ourselves – to nurture our own interests, to take good care of our physical and emotional wellbeing, to maintain the lines of communication open among relatives and friends – is imperative if we are to continue “giving freely” without resentment [Wendy Lustbader] and providing compassionate, effective care to our caree.

Caregiving has made me mindful of:

  • Appreciation for the love and support that I have received from friends and relatives
  • Gratitude for being able to take care of my husband – it just as easily could have been me with CRPS
  • Positivity and resilience, which have given me the courage to move forward past seemingly unsurmountable obstacles
  • Faith, which has reassured me that solutions await for me even when I cannot yet see them
  • The admirable strength of other family caregivers inspires me to continue on my caregiving path as an advocate for my carees, but also for family caregivers. They deserve recognition and support from the community for the work that they do. Who else provides free care 24/7?

In November, we “celebrate” Family Caregiver Awareness. Personally, I celebrate Family Caregivers! It is important to support them by offering to help with tasks, by visiting or calling, by giving them a day off. Family caregivers may not ask for help or may say that they don’t need it. But it benefits everyone, including their loved ones, to keep caregivers healthy, motivated and strong so that they are able to continue on their caregiving journey without needing a caregiver themselves.  On any given day, any of us could become a family caregiver or be in need of one.  It is up to all of us to support each other.


AGE of Central Texas

One of the ways that I have learned about the needs of family caregivers is through volunteering at AGE’s Caregiver Information and Resources Center for the past year.  I have taken many requests for help and resources, and seen first-hand how the services they provide help family caregivers and seniors.  I have also attended their Caregiver’s Circle support group, where caregivers share their days and lean on each other for encouragement.

AGE provides family caregivers with support on many levels:

* Adult Day Health Center – where seniors can socialize and spend the day in a safe and stimulating environment while they give their caregivers a break

* Early Memory Loss Program – activities for seniors & their caregivers

* H.E.L.P. – Health Equipment Lending Program lends free health equipment for as long as necessary

* Computer Lab – computer classes for seniors by seniors

* Caregiver’s Circle – support group for family caregivers

* CaregiverU – free evidence-based workshops for family caregivers

From one family caregiver to another, I encourage you to use the caregiving resources that are available to help you and to take care of yourself as diligently as you care for your loved ones.


September is Prostate Cancer Awareness month.

In an effort to spread awareness of prostate cancer as well as resources and support for prostate cancer patients and family caregivers, I have highlighted some key points from Us TOO International.

BLOG UsToo-Logo3








Us TOO International is a non-profit organization whose mission is to help men and their families make informed decisions about prostate cancer detection and treatment through support, education and advocacy.”

Furthermore, “Us TOO International Prostate Cancer Education & Support Network is a … prostate cancer education and support network of 325 support group chapters worldwide, providing men and their families with free information, materials and peer-to-peer support so they can make informed choices on detection, treatment options and coping with ongoing survivorship. The organization was founded in 1990 by five men who had been treated for prostate cancer.”


According to UsTOO International [], “prostate cancer is the second leading cause of cancer death in the United States.” [Overview & Statistics]  Yet many families are unfamiliar with this disease, which usually begins to show serious symptoms once it is in its advanced stages.  In addition, some of prostate cancer’s symptoms mirror those of other diseases, so it is not always correctly diagnosed early.  This is when education about this illness proves beneficial, not only to men, but to their families as well.  Cancer of any sort touches far more individuals than the patient alone.


The signs and symptoms of prostate cancer may include [from Us TOO]:

  • Pelvic pain
  • Frequent need for urination 
  • Difficult or painful urination 
  • Blood in the urine 
  • Painful ejaculation 
  • Loss of appetite and weight 
  • Bone pain


Because certain groups of people are more prone to getting prostate cancer, knowing what the risks are and discussing them with the doctor can improve the chances of early detection and early treatment.

Risk Factors for Prostate Cancer

*  African-American men get prostate cancer about 60% more than white males & have double the mortality.

*  If a man has a father or brother with prostate cancer, his chances of getting the disease are 2 times greater.

*  Men over 45 have an increased risk, although prostate cancer is found mostly in men aged 55 or older.  The average age of diagnosis is 70.

*  Obesity increases a man’s chance of dying from prostate cancer by about 1/3.

*  1 in 6 men is at a lifetime risk of getting prostate cancer.

*  High-fat diets may increase the chances of getting prostate cancer.

*  Prostate cancer is the #1 cancer diagnosis in US men today.


As a family caregiver for a man with prostate cancer, it is necessary to be proactive.  Us TOO International recommends:

*  Learn about the disease and its treatments

*  “Be there” for your caree, be a good listener, be understanding

*  Be your loved one’s advocate:

—  accompany him to his doctor’s visits (if he agrees)

—  ask questions about the illness, medications, side effects

—  help him adhere to his usual routine as much as possible, including activities, exercise and social life

—  encourage healthy eating and rest

—  adjust to the new lifestyle and treatments as prostate cancer runs its course

—  find support: for your loved one and for yourself

*  Take care of yourself!


It is important for both patient and family caregiver to face their situation “as is” so that they may focus on finding the appropriate solutions that will help them to move forward with their “new normal.”  Adjusting to a new lifestyle involves being receptive to changes, accepting them and taking advantage of the resources that organizations like Us TOO International provide.


Wearever, maker of washable incontinence underwear, has partnered with Us TOO International to raise awareness of prostate cancer during September.  Details of how you can help to raise funds so that Us TOO can further support its community of people living with prostate cancer follow.


BLOG Weareverlogo





Support Us TOO International with Wearever Purchases this September, Prostate Cancer Awareness Month!

A portion of proceeds from select sales of Wearever undergarments will benefit prostate cancer nonprofit Us TOO International this September. Wearever is partnering with Us TOO International to raise               money in support of prostate cancer awareness, education and support networks for patients and their families.

Throughout the month of September, 10 percent of proceeds from the Wearever men’s underwear line will be donated back to Us TOO International. This includes all sizes, styles, colors and purchases in singles, three-packs and six-packs from the Wearever Men’s Incontinence Underwear line. To learn more and purchase products to support Us TOO International, visit



(DISCLOSURE:  Wearever provided me with a garment for review.  The family caregiver and caree who used it were pleased with the product and would add it to his wardrobe.  Her husband found it comfortable and laundering was easy.  I am happy to share useful resources with family caregivers in order to make their tasks more manageable.)

Images: Us TOO   Wearever