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.

Who Protects Your Loved One When They Are Alone?

Written by Gerry Fioriglio on . Posted in Family Caregivers Blog

Thanksgiving Dinner

It is estimated that over 12 million Americans live alone in our communities.  The majority of those individuals are women or about 8.5 million.  Due to the shortage of affordable senior housing and the rising costs for housing many individuals choose to “age in place” and remain in their homes.  

The hard part of living alone for seniors is the increased isolation they experience.  As a senior looses the ability to drive this only intensifies their isolation.  This is where community programs become so important.  Did you know that a senior can go to their local senior center and receive a free or low cost meal during the day?   Transportation is often provided through senior transport systems administered in the county where they live.  

But the biggest worry for family members is the long hours their loved one is alone at home.   Philips Lifeline Medical Alert Solutions offers a range of choices to help seniors maintain their independence and give family members peace of mind.  Home Safe Auto Alert is the new standard in alert buttons.  It is the most widely used proven fall detection system in the U.S. with over 300,000 individuals now having an added layer of protection.  There are no buttons to push.  The system automatically detects a fall and calls for help in an emergency.  

Consider giving your loved one a gift of connection.  Connection with their outside community.  Connection to others in an emergency.  And a direct connection to you.  Family Caregivers Network is a local provider of Philips Lifeline Systems.  For more info visit our web page on Medical Alert Systems .

Have a Happy Thanksgiving with your loved ones.  And stay safe!

gerrys signature

 

 

You Have the Power to Prevent Falls

Written by Gerry Fioriglio on . Posted in Family Caregivers Blog

Falls are not part of the normal aging process.

When falls occur our first response is “how did that just happen?”  You look around to see if anyone saw you fall then you check to make sure you’re okay and get up.  Trust me I know.  I have fallen more than once.  What is most important is to investigate why you fell.  Were you just not paying attention?  Is there something medically affecting your balance?  It is always best to let your doctor know of falls you may be having so he can do a full work-up and feedback on how to prevent future falls.

By watching this video you will learn about 4 different exercise programs in our communities that teaches us how to prevent falls.  The power is in your hands.  For more information on Fall Prevention contact us at Family Caregivers Network, 215-541-9030.  We will direct you to the right exercise program near you.

Lifeline Falls Prevention

Philips Lifeline Medic Alert

Our Philips Lifeline Medic Alert systems provide you with the peace of mind in the event of an emergency.  Help is just minutes away.  You can also find information on Fall Prevention on the National Council for Aging website.