High tech or low tech, take your ‘Bookie’ role seriously. Choose what works best for YOU!
“He’ll need a Port-a-cath installed, we’ll schedule that for this week,” the doctor droned while my mind whirled with the shock of my husband’s non-Hodgkin’s Lymphoma diagnosis. “We’ll follow the CHOP-Rituxan protocol.”
“Chop rituxan? Sounds violent.” I thought to myself. “And I’ve heard of Port-A-Potties, but a port-a-calf? Protocol? Isn’t that your best manners when in the presence of royalty?” Clearly, I needed to pay closer attention.
I longed for a pen and a pad of paper. I glanced over at Pedro to see if he was getting any of this, but his pain-glazed eyes didn’t seem to register much, either.
“Um, excuse me, but could you repeat that part about the protocol?” I asked sheepishly. The doctor blinked and smiled.
“CHOP is an acronym for the four chemotherapies involved in treating non-Hodgkin’s Lymphoma. The newest research shows that adding Rituxan, a monoclonal antibody, to the other four drugs is the best way to treat your husband’s cancer.”
“Ok.” I hoped my nod looked intelligent. I planned on searching the Internet the minute we got home to figure out what a monoclonal antibody could possibly do for a cancer patient.
“Because Pedro will receive so many chemicals over the next several months, we’ll do a minor surgery and insert a port into his chest where he can receive injections without having to get an IV in his arm each time.”
Pedro and I both nodded like bobble heads on a bumpy road. I had learned my lesson. Cancer is a second language, and the only way to learn it was to carry a pen and paper with me and swallow my pride and ask lots of questions.
During the next eight months, I discovered that my role as primary caregiver included being the official ‘bookie’ for Pedro and his illness. He was admitted to five different hospitals and had procedures at all of them. I not only needed to take notes at doctor’s appointments, I needed to keep track of a host of information.
If you have the information you need at your fingertips, you’ll be able to fill out forms for hospital admissions quickly and efficiently and the sooner you’ll be able to give your attention to the one you care about.
These tips and suggestions should help you navigate your new role of bookie:
1. Discuss with your loved one who will keep track of information. In our case, Pedro’s pain level prevented him from wanted to keep track of anything, and we decided that it would be best for me to keep track of everything. Keep checking with the patient (if your loved one is an adult) to see if they want you to take over or continue in your role.
2. If you share the care, decide how to share the information. One mother-father caregiver team I know had a huge notebook provided by the hospital where they kept track of all of the pertinent information. The notebook was kept with their child at all times, and they shared the responsibility for updating the information. Agree to be equally diligent in keeping the information up-to-date.
3. Information that you should keep with you at all times: Even the most rudimentary cell phones now days have a memo or note feature—use it to take notes and store photos of medications, insurance cards or anything else that is vital to your loved one’s situation.
a. Medical insurance cards (or photos of them on your cell phone).
b. Admission dates to all hospitals, along with hospital contact information.
c. Blood type and allergies
d. A list of all medications your loved one is taking, along with the doses and frequency and the prescribing doctor.
e. The names and contact information for any doctors or specialists that your loved one sees.
f. Information about pharmacies that you use.
g. Emergency contact information and a clear list of WHAT constitutes an emergency.
4. There’s an app for that! Ten years ago, phones had no brains, and ‘apps’ didn’t exist. Nowadays, there are free and inexpensive apps that will enable you to keep important information at your fingertips.
a. Two noteworthy free apps: My Medical Info and Family Health Record Keeper. Neither one achieves perfection (allows you to keep all of the information PLUS allows you to take notes and write your own questions to ask), but they both stand out as being comprehension and functional with the iOS system.
What have you discovered that helps you organize the important information for your loved one?
Thanks for sharing. My current pet peeve is the whole issue of medical records. I can remember sitting in waiting rooms with my mom, trying to decipher and explain to her what the questions meant and what information was being sought. What makes sense to a healthcare provider (i.e. the “protocall” Peseo’s doctor was describing) does not always make sense to the patient or family. It bugs me so much that I’m currently revising the forms at our office. I hope in your blog there will be a forum for caregivers to share their frustrations with healthcare providers in areas that need improvement. We hear individual opinions, or course, but change really happens when there starts to be a consensus in the voices being raised.
Pedro! – that typo makes him sound like a blended basil sauce!
Excellent idea! I’ll have to learn how to set up a forum
. My pet peeve is when I take my time filling in the health questionnaires and then the doctor asks me the same questions and it’s obvious that he or she hasn’t taken the time to glance through the health history. I write some funny answers on there, if I do say so myself! Oh, maybe I can figure out how to do an online survey!
I think children’s hospitals do a better job for childhood cancer patients than adult facilities do. Our main hospital was pretty good about forwarding forms and making it pretty painless when we had an emergency stop at another hospital. Plus, I had the protocal with me in my sweaty little hands – in a giant notebook. It seems like they could make an ID card upon diagnosis and that just goes with you and all your forms and information would be there, up-dated by medical personel at each visit. Anita – I’m glad to hear that someone else put interesting answers on forms from time to time!
When they don’t comment, you know how carefully they were read…
Hi to all of you from an adult orphan from faaarwy Poland. I’m glad to have found this site although reading your heart-wrenching stories brought tears to my eyes. I know the feeling so well. I lost all of my relatives, my Dad passed away in May 1997 (cancer), my Mom in September 2010 (cancer) and my maternal Grandmother that I was close to in May 2012 (heart disease, cancer, stroke and old age as she was 96). I had been very close to my parents, they were my true friends and I feel it’s so unfair that they died before they grew really old, to top it all, suffering from the most horrific illness possible that is cancer. Neither of them smoke, drunk or led an unhealthy life; I tried to be a good daughter and yet it’s like I’d been punished. They didn’t deserve such painful deaths, either. I am in my mid-40s now, I was my Mom’s caregiver and I often think that I’ve been to hell and I haven’t come back yet I accompanied my Mom in her battle from the diagnosis, through five hospitals and to her last breath she died in my arms. Losing my beloved Dad to cancer was already a horrible trauma and I hadn’t expected it might happen again in my family. I was put on medication after she died but obviously it didn’t fill the void. Earlier this year my Grandma died and all those demons came back. I’ve given up those antidepressants, in fact I had no time to go to the doctor in spring when my Grandma was ill and dying and somehow I’m carrying on with my life but what life is that? My colleagues keep telling me all those cliches don’t give up , get a grip on yourself , it’s gonna get better but who has not experienced this, will never understand you. Everyone I know has some family sometimes I feel as if I were the only person in the world (at least of my age) who has absolutely no relatives left and the funny thing is they can’t believe me I’m all alone. I went to a meeting of a support group when my Mom died but it was a mistake I met a bunch of elderly ladies, older than my parents there, grieving their husbands. Don’t get me wrong but I felt odd there all of them had children, friends and they were from a totally different generation. So, what to do? Do I just sit here in this chair every night after work and wait to grow old and die? , it sounds so familiar. I do go to work (I’m a high-school teacher of English; I used to like my job very much but now it hurts every now and then when I think of how carefree and still naive those kids are I guess I must be jealous that they still have their life ahead of them and they have someone to return home to), deal with everyday chores, look after my cat and dog but a huge part of myself has died, my plans, ambitions, dreams, last but not least, identity. I devoted if not sacrificed my life to my parents and I feel so betrayed now. Old friends have either left me as if mourning and pain were contagious or they have their own lives with their families. To top it all, it’s hard to find new friends when you are past your twenties, let alone in your forties, especially when you seem so awkward to the rest of the society being some sort of Robinson Crusoe only with his faithful animals, minus Man Friday . And it must sound blasphemous to Americans who are so religious I do not find any comfort in religion as seeing my parents die a slow and painful death, I lost my faith in anything good, fair and comforting on this planet.Hugs to all of you!
Coto-wow, what an incredibly sad journey you’ve endured over the last six years. I’m not familiar with the mental health and medical systems in Poland, and I’m sorry that the support group you went to did didn’t work out. I do know that for many friends, they avoid those in pain and mourning because they are afraid–not afraid that mourning is contagious, but afraid that they will say the wrong thing or offend you in some way. In my times of sadness, I’ve found that reaching out to someone else–even if it’s only by smiling at them–makes ME feel better. No. You DON’T ‘sit in this chair every night after work and wait to grow old and die.” Start with small steps, but reach out to other people. Hold a door open for someone. Look them in the eye and smile at them. Offer a greeting to someone you pass on the street. It’s by reaching out to others that we know we are NOT alone. While you may have found no ‘comfort’ in religion, may I suggest that the comfort doesn’t come from religion, but from God? Find a Bible. Start reading the book of John. Get to know God (don’t worry about religion). Let him comfort you and give you strength. I’ll be praying for you.
I liked my notebook, because it had dividers and I ended up using that notebook to not only keep medical information, but al to keep track of visitors (when I felt alone I would look at the list of people who had visited and could remind myself of all the people who cared), gifts (thank you cards didn’t always get sent, but maybe I still will, someday, because I wrote them all down), and I ended up just jotting down happenings, miracles and painful moments. I am so very glad I did that, because memory lines can blur. Blessings can be overshadowed by pain. When I look back over my jottings, I’m reminded that I never was alone, that little miracles happened throughout the journey, and that yes, there’s a reason I came out a little stressed! There was a lot going on…for three and a half years, but God never left us alone!
What a wonderful idea! I didn’t do a very good job of keeping track of who had visited, but I did keep a journal and copies of the emails I sent out. You’re right–those musings provide a treasure trove of evidence of God’s love and guidance.