(Editor’s Note: We begin a campaign today to bring awareness to family caregivers–to show that family caregivers are all around us. We want our communities, including our families, our local businesses, our houses of worship and our employers, to understand that family caregivers are mothers, fathers, sons, daughters, sisters, brothers, grandchildren, nieces and nephews. Family caregivers are also neighbors, customers, employees and fellow worshipers. Helping a family caregivers is as easy as helping the person who sits next to you in the pew or across from you in the cube. We begin our campaign by featuring Jane Northrop, who cares for her daughter, Nicole. Our questions and her answers follow.)
CareGiving.com: Fill in the blank: I am____.
Jane: I am a family caregiver and a wife, mom, daughter, advocate, volunteer, support group leader and small business owner.
CareGiving.com: What’s the biggest misconception that others have about family caregiver
Jane: I think for me I feel that there’s nobody else except those through the support group and caregiving.com who are in the same shoes. This is a misconception and there are thousands and thousands of people who are currently or have been in the past a caregiver.
CareGiving.com: What would you like others to understand about your role as a family caregiver?
Jane: I think the biggest think is judgment. A person can’t judge my decisions or what I do if they have never been a caregiver and even if they have they can still be judgmental. Until you walk in my shoes don’t judge my decisions.
CareGiving.com: How do you describe what family caregivers do?
Jane: Family caregivers can be so diverse depending on the illness/disability. For me, I am Nicole’s accountant, helper for those everyday tasks that she does need help with, her advocate, her secretary, her friend, her mom and whatever else she needs me to be.
CareGiving.com: How can others help you?
Jane: I think others can help not so much by saying “call me if you need anything” because, for me, I will not do that. I would like someone to call me and say, Is there anything I can do for you today. Or just be a good listener and be there for support. I had a neighbor would do yard work and take care of my dogs when we had out-of-town appointments. I never had to ask he would just do it. I have had friends bring a meal after a long day of doctor’s appointments or just call to see how Nicole is. The focus is so much on the patient and it should be but the caregiver needs support also.
CareGiving.com: What’s one tip you suggest that helps another family caregiver?
Jane: I guess the biggest thing is just being there when needed. Some days are easier than other days and we don’t need as much help. A Wait Buddy system like on caregiving.com is wonderful for support when waiting at the hospital, doctor’s office etc. It is so easy to get sucked up in the every day care for your caree that this is your major focus and everything else goes by the wayside.
CareGiving.com: Briefly tell us about your caregiving situation.
Jane: I care for my 19-year-old daughter who was diagnosed at 15 with several congenital heart defects. Since they weren’t diagnosed, they led to a rare heart condition called Eisenmenger’s Syndrome which is reverse shunting of the heart (the oxygen rich blood goes to the extremities instead of to the lungs) which then led to pulmonary arterial hypertension which is high blood pressure within the lungs (not the same as regular high blood pressure) which causes the arteries in the lungs to narrow. She has some other issues but these are her primary ones. None of these have a cure and are progressive.
CareGiving.com: What do you hope to accomplish during your life?
Jane: To be the best advocate I can be for Nicole and for as long as she needs me to be. To be able to really comes to terms with her illness and her life with her illness and grieve the life she will never have because of her illness. I would like to be successful with my small business. I would also like to show compassion for other caregivers and those living with chronic illnesses especially parents who have children with these. Most of all I want to see a cure for pulmonary hypertension.
(We’d love to feature your story in our campaign–just complete our “I Am a Family Caregiver” campaign questionnaire. If you are a working family caregiver, feel free to also share your story as part of our Hire a Family Caregiver campaign.)