Posts Tagged ‘Family Caregivers’

The Unique Challenges of Caregiving for Rare Diseases

Written by Sara Fioriglio on . Posted in Family Caregivers Blog

Caregivers face numerous challenges, some unique to the particular disease or individual they care for, and some more general. Common obstacles such as emotional burnout, maintaining physical and mental health, balancing family/personal time, and being charged with making major decisions for their patient are few instances in which they deal with day to day. Additional challenges arise when it comes to caregiving for those with rare diseases like Ewing’s sarcoma, leukemia and lymphoma, and mesothelioma, an asbestos caused cancer that affects around 3,000 people each year.

With this November being National Family Caregiver Month, we’d like to offer some helpful tips associated with caregiving for rare cancers:

Find a detailed and regularly updated source of information.

While there are many major outlets that provide information on a multitude of conditions, they can’t always include the level of detail that a patient or caregiver would like. Attempting to seek out relevant information and updates can become a hefty job. Finding a resource that can become a one-stop shop for the information you need will save time and stress.

Be prepared to explain the illness.

When you care for someone living with a rare disease you probably don’t expect to have in depth or frequent conversations about the illness. While meetings with doctors and updating family/friends on your loved one’s prognosis seem routine, you may also be bombarded with questions from well-meaning acquaintances. Many people you encounter may not be familiar with the specifics. In order to help cope with these questions, it’s a great idea to create an elevator pitch to help quickly educate those who are looking to learn more.

Seek out support groups.

Finally, caregiving is no small task, and the people charged with this duty deserve all the support they can get. Unfortunately, since there are fewer people diagnosed with these diseases, there are also fewer caregivers who have walked in your shoes. It may not be possible to find people in your area with whom you can connect and share stories. The best option is to look for bloggers or other online communities to find people who are encountering the same experiences. Even if you can’t find a group dedicated to caring for people coping with a specific illness, it can be helpful to seek out communities focused on caregiving in general or groups outside of the health field that can offer emotional support.

National Family Caregivers Month is about celebrating the hard work and dedication of caregivers for all diseases!  If you’re looking for more information be sure to check out the Family Caregiver Alliance.

Article written and supplied in collaboration with the Mesothelioma Awareness Center.


In-Home Care for Seniors

Written by sitecats on . Posted in Homepage Article


Thank you for visiting.  I hope you enjoyed the short spotlight video of our services.   I’d like to tell you about Parkinson’s disease.  April is Parkinson’s Awareness Month.  We believe the more you know and understand about Parkinson’s disease the better you will be able to care for your loved one.  Join us on April 26th at 6pm for our Parkinson’s Seminar.  

Screen Shot 2017-04-18 at 10.46.58 PM

Learn about the different stages of Parkinson’s disease, the treatments often forgotten that can aid in improving your loved ones quality of life.  Go to your Parkinson’s page to learn more.

I’d like to tell you a little bit about Family Caregivers Network.  I started Family Caregivers Network 16 years ago.  After 30 years of working as a visiting nurse caring for adults and children in Southeastern PA, I noticed it was access to information and resources for Long Term Care services that was an issue for most families of aging loved ones.  I found caring for my own mother and trying to navigate Long Term Care services available to her was very confusing.  For me I often relied on the social workers to take care of this.  But the system for Long Term Care changes constantly.  It gets more and more complex every year.  It became personal for me to help others.  My mother used to often tell me to “go out on my own and help others”.  So, in the year 2000 after her death and with the support of my family I started Family Caregivers Network.  

I believe we offer families more than the traditional In-Home care.  My agency is based on the C.A.R.E.S. platform; Community Advocacy, Resource, Education, and Support.   This is what sets us apart from other Non-Medical Home Care agencies.   I believe it is through these four service lines that we are able to meet the entire needs of family caregivers and their aging loved ones.

Located in Pennsburg, PA in the Upper Perkiomen Valley we offer In-Home care services to seniors in Montgomery, Bucks, Berks, Lehigh, Northampton, and Chester Counties.  All staff are trained in house by a nurse supervised 40 hour training program.  Additional training is given to our home care aides who specialize in Alzheimer’s and Parkinson’s care.  All staff are bonded & insured.  

With the help of Family Caregivers In-Home Care we keep families together and decrease the stress of caring for an aging parent or love one. As you visit the pages on our website watch our education videos on our Educational Outreach page to learn about services and products that help with the care and safety of seniors at home. 

Caregiving is very stressful and can affect your health.  Especially over the holidays it is important to get the proper rest so you can refuel to care for your loved one.  As you surf our website check out the information on our Caregiver Support Groups.  Support Groups are an important part of respite for family caregivers.  Call our office at 215-541-9030 for more information on how you can get the help needed to refuel your health.

With warm regards

gerrys signature




Gerry Fioriglio RN, CDP, BS