“The true strength of the American family finds its roots in an unwavering commitment to care for one another.”
– President Barack Obama
November is National Family Caregivers Month, “a time to thank, support, educate and empower family caregivers.” There are more than 65 million family caregivers in the US who day in and day out fulfill a vital role on the care team for a family member. They also tend to be the most knowledgeable person when it comes to daily treatment, diet and exercise regimens for the person they love.
The theme for National Family Caregivers Month 2011, sponsored by the National Family Caregivers Association (NFCA), is “Identifying Family Caregivers.” The goal is to encourage both caregivers and medical providers to ask for a designated space on every medical intake form for a caregiver name. Otherwise, the NFCA argues, caregivers are “invisible in American healthcare.”
In contrast, caregivers play an important and prominent role in PatientsLikeMe’s “CareTeam” concept, which was developed to include everyone who is actively involved in the care of our patient members. That could be a spouse, partner, parent, child, doctor, home health worker, relative or friend. Patients can invite anyone on their real-life CareTeam to join PatientsLikeMe and be linked directly to their profile.
Currently, there are more than 7,000 caregivers using PatientsLikeMe. (Browse their profiles.) Here is a sampling of their stories and situations:
- “I am a mother who would like to know more about bipolar disorder and know how I can help my daughter, and let her know I care.”
- “I am a caregiver for my wife, who has generalized epilepsy. I have allocated a big part of my life to help my wife become more stable.”
- “In 2005 my husband was diagnosed with young onset Parkinson’s disease and through my desire to be the best caregiver possible I forgot about me.”
- “My husband was diagnosed with ALS at age 47 in June 2007 on our 25th anniversary. It’s hard to see not only his body deteriorate but his spirit too.”
- “For decades, I have been caring for members of my family and community regarding mental illnesses and life challenges, mostly my beloved auntie.”
- “On July 6, 2008, my partner got results saying he was HIV positive. It was a hard night for us, we cried and talked and cried some more.”
- “I am 30 years old. I am one of the caretakers for my father who was diagnosed with ALS when I was 8 years old. I try to be there for him as much as he needs.”
Are you a caregiver? We encourage both you and the patient in your life to join PatientsLikeMe to share your experiences, find support and learn from other patients and caregivers.
