Today, I am taking a first step into the unknown: I am entering the blogspace. With this first step, I am embarking on a journey that will require daily effort, daily attention, and daily energy. I am not sure how well I’ll do, or whether I’ll even know if my work finds an audience. I begin with hope, enthusiasm, a deep devotion to caregiving, and the profound belief that all caregivers need support.
This blog is dedicated to caregivers and caregiving. I write with the caregiver in my heart and in my mind: the family caregiver, the professional caregiver, the friends and relatives of caregivers. I am hoping to reach those who, like me, are on a caregiving journey.
If you are not a caregiver right now, and if you are fortunate enough not to know anyone who is for an elderly, infirm, or needy family member, friend, or patient … well, consider yourself very fortunate. In coming days, I’ll share some statistics with you that will make this point clear: the odds are high that you will likely become a caregiver, or need one yourself, in the future. When that day comes, you will likely feel unprepared for the avalanche of physical, intellectual, emotional, and spiritual challenges you will face. You will very likely need more support that you can now imagine. You will often feel alone.
It is my hope that you will see you are not alone. Friends, relatives, neighbors, clergy, coworkers, health professionals, and yes, virtual support systems like this blog, are there to offer support. I know that those who care for caregivers are an extraordinary group. In over 30 years of offering hands-on care to individuals in different stages of illness and crises, I have seen the effects of these difficult times on family and friends. I also have listened to, guided, taught and comforted those who care for the ill, injured and elderly. I am blessed because I learn more from these families than I could ever teach. The most important lessons are always related to loving and caring for one another.
I chose Abraham Lincoln’s quote as an opening theme for this blog, because all who are on the caregiving journey know that we must take each day as it comes. The caregiving journey is always measured by incremental steps of daily perseverance, not grand leaps.
As I begin this new journey, I hope you will join me and invite friends to join, too. We can use this site together, to share advice, ideas, inspirational stories, questions, and concerns. We may laugh, we may cry, but we will – above all else – face these challenges together.
KD
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ReplyDeleteHi all, I am a mom of two children, one who is 2 years old named Abby and one who is five years old named Emma. When Emma was born, we brought her home, thinking we brought home a normal healthy child. Seven days after she was born, I received a phone call at 9:00pm from Emma's pediatrician that changed our lives...being a nurse myself, I knew that this could not be good for a physician to be calling that late in the day. We then found out that night that Emma was to go to children's hospital to be tested for Cystic Fibrosis because she screened positive for it during newborn testing. Cystic Fibrosis is the most common genetic fatal illness in children. Scares us so much. My husband ran up and grabbed Emma out of the crib where she laid and began to hold her and cry his eyes out, and me, I began to scream and pull out all my nursing books about everything I could find about CF. Once I started reading, I realized mine and my husband's lives would be changed forever. Cystic FIbrosis requires an everyday rigerous medical regimen for the child and the caretaker (me), you basically fight Cystic Fibrosis from taking a toll on the health of your child everyday and strive to keep her well. The medical regimen increases in intensity as the child gets older because unfortunately the median age right now is 37 years old, however 50% don't reach their 18th birthday and symptoms and the disease worsens as time goes on. We are very hopeful for Emma, through research and fighting this illness, we feel that CF will be cured or at least managed to the point of Athsma. (we hope!) As a caregiver, I've sure had some ups and downs. At first, I walked around like a zombie, when Emma was first diagnosed, felt like I was dreaming a horrible dream when this first happened. Then, yes, I got into fundraising for Cystic Fibrosis research...hoping to gain control over how I was feeling or control over anything at that time. It was hard, a baby can't tell you what is wrong, especially scary when it's your first child, because I remember thinking, "I don't even know how to care for a baby, let alone a baby with Cystic Fibrosis." I wish I could tell you some "Glory story" about how GREAT I handled it emotionally and mentally but I don't have that story just yet, and it's been 5 years now. It is challenging everyday, especially since having our second daughter who is a pistol with a capital "P" :)...and in the terrible two's...She does not have CF, but is in constant competition with her sister about who can get more attention even if she has to do it in a "bad" way. Abby (no cf) sees how much "attention" sissy (Emma with cf) gets and gets a little jealous. Right now our current situation is, I was unemployed due to my unavailability to my company, (prior to Emma, I was always available and worked my butt off for the company) but after having her, my time became very limited and I just couldn't maintain a job...I was laid off right after my maternity leave with Abby...I worked for them for about 8 years and then one day, BAM...YOU'RE LET GO??? Grrr...makes you mad when you were trying to do the BEST you could do, while having a very "sick" little girl at home. Currently Emma is on 45 pills/ day, 2 different routine antibiotics, 6-7 breathing treatments/day, 3 rounds of 30 minute chest PT/day as well as some other miscellaneous drugs. With her being on this regimen, I have felt that people have chose to leave us, so they did not have to help...easier to play the blame game, then step up to the plate for us, I guess. Emma does not get home health at all...no other care but mine and my husbands.
ReplyDeleteWendi,
ReplyDeleteThank you for posting this. I could not in my wildest nightmares imagine getting that phone call and having to wait. You and all CF parents are heroes and you do it alone so often. What can I do for you?
KD