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My Ultimate Caregiver
By Karen DíAngelo  

ďAt the end of the day when the weight of the world has fallen upon me, I lie comfortably in bed knowing my husband is picking up where I left off.  When Iím too tired to make my sonís meds, or greet the night nurse, it is my husband who never says ďnoĒ and who is always willing to go the extra mile for me and our children.Ē

My name is Karen, my husband is Pete and our boys are Brennan, age 12, and Trevor, age 9.  Trevor was born with a metabolic disease that no other child in America has.  Trevorís health has slowly deteriorated and currently he cannot walk, cannot talk or make sound; he breathes using a trach with continuous oxygen and a ventilator every night, is fed through a g tube, and is very lethargic due to several medications he is on to prevent seizures.  Trevor spent 100 days in the ICU last year and he is dependent on others for every facet of his care.

My husband Pete is a full-time teacher and a super full-time husband and father.  Due to Trevorís intense medical needs, a night nurse or wakeful caretaker is mandatory.  Due to the shortage of homecare nurses, it has been our job to make sure Trevor is physically safe and maintaining a safe airway when a nurse isnít available. Many nights, Pete has had to stay awake to make sure Trevor is safe.  Our only other choice would be to put Trevor in a home or institution.  This would break our hearts.  I am especially tired at the end of the day due to a heart condition I developed as a result of my pregnancy with Trevor.  The medicine I take makes me unusually tired. This means Pete has to take care of Trevor in the evenings, even when he has planning and grading to do for school.  My days are often spent on the phone trying to organize doctorís appointments, driving to various pharmacies to pick up medicine, stocking the house with supplies, and keeping up with the proposals to Medicaid for the items Trevor needs such as a generator, a hoyer lift and a new wheelchair.  Pete always puts his family first; and if that means he has to be up all night to get things done for school, that is what he will do and that is what he has done several times.  

There are so many families who are challenged the way we are and Iíve often heard of marriages that fail because of stress.  I am proud to say that my husband and I have thrived because Trevor has become our lifelong project, something we work at and for ďtogether.Ē  When I canít take anymore, Pete is there to take over and lift me up, many times by massaging my feet or back and just making me feel loved and comfortable.  My husband not only cares for our beautiful sons, but he remembers daily to care for me, too.  There have been more nights than I can count that Pete has had to put in a full day at school, only to come home, pack a bag and drive an hour to the hospital to stay with Trevor for the night, then go back to work the next day.

Please consider my husband Pete as an ultimate caregiver.  He is a role model to me, our family and, most importantly, to our eldest son, who will no doubt be a super dad someday!!


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