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Entries in Caregiver (20)

Thursday
Sep272012

Ask Me Anything Answer: Kelly

I received this question from an anonymous poster on my 'Ask Me Anything' discussion board.

From posts and talks, it seems you are the only caregiver of Arden's diabetes. Understanding you're a stay at home dad, probably works easier that way, but I was curious how your wife is involved.

 

This is a great question and I am very glad that it was asked!

It was clear almost from day one that Arden's diabetes was a full-time job and that the 24/7 nature of the disease required a full day view of the events that not only transpired today but for the days prior. Those truths make handing Arden's care back and forth problematic. With that knowledge Kelly and I decided that one of us should be the primary and because I am a stay-at-home dad I was the obvious choice. If we were making the decision based on who was prettier, smarter or more detail oriented, Kelly would have gotten the job!

Arden's Day is written from my perspective and I don't share my stories in other's voices so it may seem like Kelly isn't as involved as she is. This is an unfortunate side-effect of blogging and why I was so glad to receive this question. I can be wordy so in an effort to keep my post to a readable length I avoid writing a lot of dialogue. Whether or not my writing is in any way special is up to the person reading it but I think my strength is bringing a reader into how I feel and allowing them to leave the text with the emotions that I experienced. I find that when a post has too much, 'and then he said this and I said that' things have a tendency to get muddled. In an effort to stay as short and sweet as my gabby mouth allows, I simplify some situations and combine characters. If Kelly and I confer for example, I may just relate that conversation to you as an inner monologue.

All that behind the curtain stuff aside... here are the ways that we manage things at our house.

During an average day I handle type I autonomously. I wake up every morning before Arden and check her BG and make adjustments if necessary so that she can begin her day with an in-range number. I come back into her room about 30 minutes before she eats breakfast and we pre bolus for the meal. During the school year Arden and I converse via text and phone throughout the day and make decisions together about her insulin, food and other type I needs. I am here when she arrives home and we take care of meals, bedtime and the rest. I wake up or often stay awake throughout the night to help keep her BG from causing issues as she sleeps... then we do it again. I take care of OmniPod changes, DexCom insertions, I order and maintain the supplies and go to the doctor's appointments. We handle things this way to make the best use of the knowledge base that continual exposure to type I care brings to me, not because Kelly can't or doesn't know how to handle them on her own. Kelly has a rather high pressure, long hour type of profession that uses a great deal of her time. We like to keep the time that she has left available, as best that we can, for her to enjoy our family. 

When all of this gets the best of me, and it frequently does, I reach for Kelly and she takes over until I can be ready again. Kelly will take an overnight for me a few times a month and there are days on the weekends when she manages Arden all day and night without my involvement to give me a break and keep her up-to-date with how Arden's type I management is morphing. It's difficult to pass care because there are so many little tricks that I use and adjustments that I make on the fly, these small but important decisions are bred from countless hours of managing diabetes and can't be easily passed on to another CareGiver. For example, I gave Arden more insulin this morning then I usually would have based on three factors; a BG that we got yesterday at the same time of day, the fact that she is on the first day of a new pod and a spike that I saw on her CGM overnight. You just can't teach that stuff and it takes a lot of time to absorb, if Kelly (or anyone else) were to have began the day caring for Arden they wouldn't have the benefit of those three experiences and would have no way to know that a change was required. In kind, I didn't know until I took the last steps of the morning and put it all together in my head. It really is true that diabetes management is more of an art then a science! 

I know from speaking to some of you that the method I described is very similar to how many two parent homes handle type I management. I think that each parent needs to have a working understanding of the way type I is handled because everyone needs a break once and a while and care shouldn't have to suffer during the moments of respite. I feel extremely lucky to have Kelly waiting to take the meter from me when I pass out, it's an ugly baton pass that very frequently begins with me slumping over on the sofa.

I'm going to borrow a passage from my own book and share it here. The book is only in it's first revision so this bit may or may not make it past editing but it will tell you all you need to know about Kelly and what she means to me and our family. I wrote this passage in the chapter that tells the story of Arden's diagnosis and subsequent hospital stay...

On the nights that are the hardest I think about Kelly in that crappy vinyl chair, sitting with sand in her ass, legs asleep and having to pee for the last twelve hours and I keep going in honor of what a great mom she is to our kids. I try my hardest to respect the fact that if our roles were reversed and Kelly was the one staying at home that she would provide daily that same level of care, love and concern that she did that day. I do what I do because it keeps Arden healthy, I do it because I love her, but I do it the way that I do it with Kelly’s example as my guide.

 

Wednesday
Sep262012

My remarks from #ePatCon

with WEGO Health CEO Jack Barrette

Below are my remarks from e-Patient Connections 2012. I was at #ePatCon as a guest of WEGO Health where I was recognized for being the 2011 Advocating for Another award winner. The occasion presented me with the opportunity to speak about what my advocacy means to me. Below are my remarks as delivered.

 

Hello... My name is Scott Benner. My daughter Arden is eight years old and she was diagnosed with type I diabetes just after her second birthday.

Our life with Arden's chronic illness fills my heart with so many conflicting emotions - Feelings that don't seem like they should be allowed to inhabit the same space. Love & pain, anxiety & hope, sadness, personal growth...are just a few of the adjectives that describe my families day.

I open my heart and give a voice to the struggle on my blog to hopefully show the world what Arden's life is like so that others may understand, so that my fellow CareGivers, the ones that don't have this voice or perhaps don't want the attention can know that their pain isn't theirs alone to endure. This is a life that often is too much for one person to bear, but together,..... together we are stronger and more determined then our illnesses.

Social media saved me. When we share, when we let others see our real and honest human struggle... it helps people. It builds community, creates a support system, provides relief, connection, love... and I am recharged by the knowledge that when I write, my words create hope... and I am saved as well.

I think that I was awarded the 2011 WEGO Health Advocating for Another Award in part because I don't write about numbers, I don't pretend to know all the answers, I just say, "this is how diabetes made me feel today... Maybe you feel like that too." And I hope that knowledge, that simple act of letting screwed up feel normal... helps someone to feel anything other then alone.

I am transparent on the Internet because helping others is the only thing that I've found that makes my daughter's illness not seem arbitrary and cruel.

I want to thank Jack and WEGO for this honor and encourage all of you to support social media in anyway that you can. It's so simple that it seems like there must be more to it, but there's not. We are the only ones standing in the way of helping people with the full power and possibility of social media and patient bloggers.

The diabetes online community saved me and I'm doing my best to give others the ability to say the same. All you have to do is ignore your fears and run forward and you'll be doing the same.

Hope lives online.

Thank you...

 

My pictures from ePatCon are available on Instagram, Arden's Day and this PhotoStreamthat I used during the conference to make images available to all as they were being taken. Don't be surprised if you see some familiar faces!

 

Nomination are being excepted now for the 2012 awards and I'm hopeful that you'll consider nominating your favorite DOC writer(s).

 

WEGOhealth covered my lodging expenses and travel for the conference.

 

Thursday
Sep202012

Blogging Diabetes Podcast (feat. Me)

Recently Tony Rose interviewed me for his podcast, 'Blogging Diabetes'. We talked about raising a CWD, my new book, 'Life Is Short, Laundry Is Eternal', I got a little mushy about my wife Kelly and much more. I hope you enjoy the episode and if you get the chance, I'd love for you to come back here and let me know how I did.

Direct link to Episode BDP 56

Blogging Diabetes on iTunes

Thursday
Sep062012

Unfathomable loss

I am sorry to say that fellow diabetes CareGiver blogger and DOC member, Meri Schuhmacher lost her husband Ryan on September 2nd to cancer. Meri and Ryan have four boys, three of whom have type I diabetes.

I never met Ryan, Meri or their children but the pain that they feel is as real to me as if they were part of my own family. I believe that connection is a direct result of the power that the diabetes online community creates in our lives.

Meri has a wonderful blog called 'Our Diabetic Life' and spoke today about the loss of her husband. I think that everyone would benefit from reading what she has shared. I urge you to reflect on the fact that her words of anguish have been permanently added to the collective that is our community. The gift of the DOC is not just the people in it or the connections that we make. It is also a repository for our struggles, pain and triumph that will assuage others tomorrow and beyond. 

Hug your loved ones a little tighter tonight and then support Meri and her family in any way that you can. There is no better way to give back to the DOC then to support one of it's own in their greatest time of need.

When you are finished reading her words please leave Meri a message of support. And if you are able, I hope that you will add a few dollars the the fund that friends of the family have created to help with the costs associated with this tragedy. http://www.giveforward.com/schuhmacherfamilymiracle2. May you all be well...

With a heavy heart,

Scott

Tuesday
Sep042012

My Guest post at 'The Life of a Diabetic'

Chris at 'The Life of a Diabetic' is running a 'Diabetes Parenting Week' feature on his blog and he was kind enough to ask me to contribute. The piece I wrote titled, 'Letting your Kids be Kids even with Diabetes' kicks off the week today. 

I wasn't just excited to be a part of what Chris is doing becasue he's a good guy and I like his blog, though that was part of my decision making process. Mainly, I love the idea of blogs that are mostly read by PWD hearing a little bit about the CareGiver side of type I diabetes. I hope you enjoy my take on the subject and if you can, please take a moment to let Chris know that you found his site through 'Arden's Day'.

My back to school posts will begin later this week as Arden doesn't go back to school for a few more days.

Talk to you soon, Scott