{"id":128381,"date":"2016-11-04T11:45:02","date_gmt":"2016-11-04T11:45:02","guid":{"rendered":"http:\/\/healthmedicinet.com\/i\/5-faces-that-give-an-inside-look-at-caregiving-in-america-today\/"},"modified":"2016-11-04T11:45:02","modified_gmt":"2016-11-04T11:45:02","slug":"5-faces-that-give-an-inside-look-at-caregiving-in-america-today","status":"publish","type":"post","link":"http:\/\/healthmedicinet.com\/i\/5-faces-that-give-an-inside-look-at-caregiving-in-america-today\/","title":{"rendered":"5 Faces That Give An Inside Look At Caregiving In America Today"},"content":{"rendered":"

By Susan Hogue<\/strong><\/p>\n

\u201cNovember is a passionately regarded month to me for two reasons\u2014it\u2019s National Family Caregivers Month and Epilepsy Awareness Month. For most of us family caregivers whose lives are touched by epilepsy, it is a year-round, 24\/7, low-pay, often minutely appreciated and respected, full-time job. My son Paul was 7 when diagnosed with epilepsy and I basically reattached the umbilical cord. His seizures were so frequent and intense that he was unable to be alone, still requiring 24-hour care today at age 35.<\/p>\n

The most horrifying seizures are watching him in full body convulsion, choking and frantically gasping for air, with me (5\u20191\u201d) protecting him (5\u201911\u201d) from hitting his head while trying to keep him on his side so his air passages are as open as possible, wishing I could do more as he starts turning blue, and praying the seizure will stop soon enough for him to get his breath. It\u2019s the most excruciating torture a parent, or anyone trying to help, can experience. In the ensuing struggle protecting him from hurting himself, I\u2019m often hit by his uncontrollable jerking extremities, while with a seemingly third hand, wiping the saliva and blood from his mouth as he gasps for each life-saving breath. Because his teeth are grinding, I\u2019m sometimes trying to rub an Ativan pill to dissolve in between his lip and gums without me being bitten, to help slow or stop the seizure. When the seizure finally starts to relax, after the longest 3-5 minutes imaginable, he\u2019s incoherent for about an hour, then wiped out for the rest of the day ? all previous plans now cancelled, but thank God he\u2019s alive.<\/p>\n

As his caregiver, I could only work part-time in order to care for Paul as he was experiencing a variety of uncontrolled seizures every day, sometimes requiring paramedic visits and Valium injections to make them subside. For almost three decades, I struggled to help Paul try to regain a normal life, even starting and running a non-profit organization to help him meet others dealing with similar issues and to assist them all with their day-to-day struggles. Our experiences trained me as an advocate for disability rights and presenter of appropriate seizure protocol at schools, businesses and public venues, helping eradicate the stigma associated with epilepsy. A caregiver\u2019s job is also to stay apprised of breakthrough treatments, studying and pursuing everything leading edge including his current NeuroPace implant which I believe has literally saved his life, transforming many of his seizures into what now looks like sneezes.<\/p>\n

Paul is my hero, taking on hurdles like any well prepared front-runner, never letting anything keep him down, battling the seizures with meds, implant and a positive attitude. As caregiver\/mom I\u2019ve learned a lot. I\u2019ve often had to let go and rely on faith. Instead of staying home fearing his seizures, he is now a Gold Medal Athlete and Global Messenger for Special Olympics and an Ambassador for NeuroPace.<\/p>\n

And I\u2019m still here by his side, scheduling, supporting, loving.\u201d<\/p>\n

\u00a0<\/p>\n

Jennifer Severeide, 54, has been caring for her sister, Laura, 57, for more than three years.<\/em><\/h4>\n","protected":false},"excerpt":{"rendered":"

By Susan Hogue \u201cNovember is a passionately regarded month to me for two reasons\u2014it\u2019s National Family Caregivers Month and Epilepsy Awareness Month. For most of us family caregivers whose lives are touched by epilepsy, it is a year-round, 24\/7, low-pay, often minutely appreciated and respected, full-time job. My son Paul was 7 when diagnosed with Read More<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[],"tags":[],"class_list":["post-128381","post","type-post","status-publish","format-standard","hentry"],"_links":{"self":[{"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/posts\/128381","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/comments?post=128381"}],"version-history":[{"count":0,"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/posts\/128381\/revisions"}],"wp:attachment":[{"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/media?parent=128381"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/categories?post=128381"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/tags?post=128381"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}