Healthier Stay

#A4Amonth Day 4: Surprise! Bet you didn’t know…Introvert to Cheerleader!

Posted in #A4Amonth,Newer Posts by Healthier Stay on August 24, 2012
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Day 4: Surprise! Bet you didn’t know…Today’s post theme is all about the reveal. What’s something people would be surprised to know about your life as a caregiver or your loved on. Uncover it and elaborate upon in stream-of-consciousness-style.

One thing that has especially surprised me as a caregiver, is how much I have really grown as a person. One thing that I have been able to do is overcome my crippling  shyness. I really have a hard time in crowds and around a lot of strangers. It’s very easy to just live like that when it is only effecting me, but once I learned that you have to speak up at the hospital or risk your patient’s care, I started talking. I started introducing my patient and myself and writing down the Doctor/Nurse/Tech/Aid’s name and remembering it the next day. I started asking about their day and their families, how they decided to follow medicine as a career and I got to know them. Complete strangers! If I was at a party, I would be stammering all over myself or just smiling and nodding, hoping to see someone I knew. 

This change seemed to come about because I am (unfortunately for me) much more willing to exit my comfort zone to help someone I love than to better my position. It’s worked in many ways though, when my Mom was in a rehab center, she had an awful infection caused by her radiation treatment. She worked so hard to be strong and work on her rehab every day but she kept falling behind. One day we got word that the insurance company was sending her home and she was on her own…I was fit to be tied so I started calling the insurance company myself, I called the helpline and her case manager and found out that we had one way to appeal, her doctor could present her case and if he was persuasive enough and had enough documentation he could buy her some time. I went to each of her care groups, Physical and Occupational Therapy, Social Services, Case Workers, Nurses, Aids and her Doctor, told them what had to be done and withing 2 hours we had a plan of attack and the doctor was able to plead her case the next day. WE WON! They gave her another week without prejudice and tracked her progress from after her infection, not before. Our team would not have been able to work so fast if we had not had a rapport and/or if no one was there to stand their ground.

It’s not just me, I’ve seen it in so many family and care advocates that it continually astounds me, but it definitely makes me so proud! Go Patients, Go Caregivers! Go Team!

#A4Amonth Post 3: From the Fish Bowl

Posted in #A4Amonth,Newer Posts by Healthier Stay on August 23, 2012
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It is hard for some healthy people to understand life in a Chronically Awesome household. Most of the time they think our lives are a torturous “Job-like” existence. Job, in the Bible,  lost his wives, his children, his livelihood and his health all due to a bet between God and Satan to see how faithful he was. In the end he was “reimbursed” 10 times over but he had to lose it all first. That is a horrible story to be compared to. My Dad had Crohn’s and lost his battle, my brother and I have Crohn’s and fight it every day. My mother lost her bout with Cancer,  but never in my life have I considered us Job-like. We have dealt with our problems just like any other family would, one day at a time.

Being a caregiver is often misconstrued as a duty posistion,  someone gets stuck with it because no one else will do it. I disagree. In talking with other caregivers, i’ve learned that most of us do it out of love. We try not to get burnt out because we want to be there for our loved one. We work to have social and private lives of our own and to make sure to employ respite care services so that we remain fresh and healthy. It’s no picnic living in a Chronically Awesome family, but it is my family and there is always love. Whay more can
we ask for?

#A4Amonth Day 2: Favorite Things

Posted in #A4Amonth,Newer Posts by Healthier Stay on August 22, 2012

Day 2: These are A Few of My Favorite Things Post

List time! Write 5-10 of your favorite things about your loved one? Celebrate their uniqueness and be sure to tell us why those are your favorite things.

I’ve led an incredibly interesting and fulfilling life. I have learned to appreciate it through the examples of my parents not just as patient/advocate/caregiver but also as the people and parents they were. We (my brothers and I) learned to navigate the world and our adult lives. These are a few of my favorite lessons {things}.

1. You do what you have to, but always leave time for the important things in life.

This picture is from the first day of school in 1988. My Dad is taking the picture (he was a photographer) but we are all together for the first day of school. What you can’t see is that he was recovering from serious surgery and that my mom had just gotten off the 5pm to finish shift at the bank. She sometimes had to work 14-16 nights but she would sleep during the school day and see us for an hour or so before she had to leave again for work. We learned not to take these moments : school starting, soccer games, birthdays, family reunions, vacations and quiet family time for granted. They did everything that they could to provide for us and still give us a happy childhood. I hope I can do as much for my future children.

2. If find something you love, learn everything you can about it, and share it with others. 

I mentioned that my father was a photographer. He had a real passion for photography, not just the visual art part but the technical aspect. He took classes and went on to teach classes, take pictures as a business and do family portraits for Mothers Day at church, along with other functions. He celebrated the art and science of photographs and shared it with others, including my younger brother who is a very talented photographer today.

My mom loved volunteering. Growing up she was our Sunday School coordinator, Youth Group Sponsor, Emmaus/Chrysalis Leader, Camp Counselor and she loved to volunteer for St. Jude Children’s Research Hospital later in her life. They both taught us to share, give back and appreciate others talents too.

3. Enjoy life as a family!

We are a family of shooters! My Dad and I used to compete together at the Second Chance Shooting match every year. He taught us gun safety and how to respect a weapon before we ever were allowed to touch a gun. We learned and appreciated all of the lessons. I can’t even think of the word “gun” without the gun safety rules flashing in my brain, 20 some years later. We shot as a family and would vacation for a week each year for this particular event. We worked there when we were old enough and made life long friendships as the weeks passed. The most important thing was we did this as a family and our Mom was the crack shot of the family!

4. Be comfortable in any environment

It didn’t matter whether we were at a greasy spoon, a 5 star restaurant or our kitchen table, we were taught manners. It was so important to our parents to make sure we would be comfortable at any event that we may ever attend. They didn’t want us to ever feel like we didn’t belong. No child of their’s would be limited by their manners. They taught us etiquette and confidence, a lesson I have used countless times and am always grateful.

5. Treat others as you want to be treated.

This seems so elementary, “The Golden Rule”, but it is a huge part of patient advocacy. We, patients/advocates/caretakers, usually only see healthcare providers in times of stress. It is important to remember that we need to be as nice as we can, even in excruciating pain, for the simple reason that “You catch more flies with honey that vinegar.” If you are a compliant patient and you have a good rapport with your healthcare staff you will be amazed at how they treat you. You are set aside from the group and more importantly, you are Remembered out of hundreds or thousands of other patients. Be remembered as the funny patient that every one wants to help and not the pain in the ass mean patient that only gets the minimum care. We are dealing with people, after all, and we are all of us fallible while we are trying to get through our day.

These are some of the things that I am so thankful to my parents for teaching me that I have had them to “Favorited” in my mind for years. I’m not big on “Bright Copper kettles and warm woolen mittens”…at least not in August.

#A4Amonth Portrait Post

Posted in #A4Amonth,Newer Posts by Healthier Stay on August 21, 2012
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I have decided to take part in the WEGOHealth blog carnival this week because I think this is a fantastic and fun way to blog. I have also had a very harsh year and I would like to use this opportunity to kick start my blogging again. I’ve missed you guys!

August 21 • Day 1: Portrait Post
Write a descriptive portrait of your loved one. Share qualities that make them, them – and include an image! (A photo or
creative work of them!)

I am writing about the two people I have advocated for the most {other than myself} my parents, Melissa and Dick. It may be a bit different from other caregiver blogs because they both passed away due to their illness. My father left us in 2005, and my mother just moved on in May of this year.


These are pictures of my parents as I remember them, healthy, vibrant, happy and enjoying their lives whole heartedly. I was privileged enough to be there to help my Dad as he fought Crohn’s disease and my Mom as she battled Cancer. I learned to be the person and writer I am by watching how they lived, loved, raised a family, fought for their strength and how they left us. I learned to advocate for myself through my Dad and I learned how to fight for and care for others from my Mumsy. These lessons are etched into my soul.

I have to admit, my grief is still suffocating me and I’m crying on my laptop right now, so this will be a short entry. Before I finish, I want to explain something to the other caregivers out there: We fight for our patients and we fight the disease and we do all that we can to navigate the healthcare world, but fighting until the end is NOT a failure. We are there to help them in any situation we can, up to and including having their backs until they go. It’s depressing as hell, I know, but it’s the truth. Do your best, give it your all and never regret being there for your patient!

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