Prize winning Thanksgiving

It was a couple days before Thanksgiving break. Michael, seated in his wheelchair, was holding a pumpkin while I glued on feathers and multiple little trinkets. Sure to make it the prize winning creation for a contest at school the next day. The best part of this treasured memory is the stories that have followed as a result of the blisters we received from doing this project. It was the first time either of us used an electric glue gun and didn’t realize that some cold water nearby was a necessity. I can still picture Michael laughing hysterically as I rushed through the kitchen screaming, “Hot glue, hot glue”.

That is merely one of the hundreds of Thanksgiving memories I hold sacred like a priceless gem woven into the fabric of my life. If visible it would be a banner displaying the word grateful for all to see. I recall the Thanksgiving feasts enjoyed at my parents house. Multiple tables lined up in the basement covered with each of our favorite things to eat, prepared with great detail by my Mom. Thoughts of my Dad sharing the latest joke he heard, him asking the grandchildren to pull his finger or if they finished their can of pop. I remember the Thanksgiving we were able to enjoy a Zimanske family hay ride; huddled together on a hay rack from the farm. The video camera taping each child announcing their age and Jessica proudly proclaiming she was not 6 but “6½ years old”, which became a memory the Zimanske cousins still laugh about.

Sure to come as no surprise to those who know me, I love to tell stories and share my memories. I enjoy experiencing the shared emotions that flow from the reruns of a happy memory. It feels as if the joy of the memory wraps a loving embrace around the group just because they heard the story, creating intimacy between those who now collectively share the memory.

I am, to my knees, thankful for the many memories I have that give way to great stories. Some happy, some sad, some intense, some just plain silly. Because of them, sheltered in grace and mercy, I have a depth of appreciation and gratitude that is divinely unexplainable, especially during this season of thanks.

At the risk of sounding cliché, remember to say thanks this Thanksgiving. Seize the moment; even if the words don’t come easy. Tell that special someone in your life that you are thankful for them. This Thanksgiving, tell a story and share your memories or create new ones as you Be the Change.

Everyone needs a good partner

My life is tremendously blessed by great partners - my husband and children, my family and friends. We all partner together in various ways to simply lighten the load. In addition to my personal life, I have been impacted by great work partners, beginning in high school with a wise woman who worked at the local hardware store. All of these partnerships make me better because we act together to create something more powerful than if we acted alone.

I read once that everyday we should do something that inches us closer to a better tomorrow. Be the Change desires to do just that, simply by being a good partner. Be the Change (BTC) works to develop a new partnership in health care by defining a future for the patient and family perspective.

With good partners, BTC will:
-Give a face and voice to the Patient Family Perspective (PFP)
-Respectfully share personal health care experiences and insights as a catalyst for real change
-Maintain a website containing patient and family stories, along with speaker information about representing PFP in your organization
-Create innovative ways to improve health care quality and patient/provider safety
-Represent PFP in chronic care situations as liaison for coordinated care between patients, families and providers
-Receive fair compensation for patients and families representing PFP by establishing value and equality through fiscal partnerships with medical providers and administration.
-Work hand and hand with the medical community advocating for PFP and humanize medicine by strengthening relationships
-Obtain a PFP position in boardroom decisions
-Educate medical students by enhancing current curriculum that more consistently lines up with PFP
-Educate current medical staff how to effectively partner with BTC
-Develop brochures, books and video for everyone to partner with BTC
-Focus on the truth, which is we all want the same thing - the best possible outcome for the patient

Everyone needs good partners, especially in Minnesota where we plan to Be the Change.

Change and more change

This past weekend we celebrated my father-in-law’s 79th birthday. On the drive home I thought about the multitude of changes he has experienced in his seventy nine years. Including the new changes he is forced to experience because of varying health conditions. None of us are immune to change and then more change. One of my husband’s famous sayings is, “We don’t like change”. We don’t necessarily have to like change, it’s what we learn from it that truly changes us.

One of the definitions of change in the dictionary is to transform or convert. I can relate to those simple yet complicated words. We had to transform our life many times throughout Michael’s illness. Each conversion definitely not easy, in fact just recently demonstrated in our change of address. In every change we grew beyond our limited view, learning things we wouldn’t have had we not accepted the call for transformation.

Michael was our change leader, which wasn’t what I thought initially as we were inundated with changes. I naturally moved into the matriarchal role of, the one in charge, leading my family through these many changes. On the other hand, Michael thought he was in charge and the boss of me! The truth is Michael had to change the most because of his rare disease. I think innately he knew in order to avoid SIOD be who he was, he had to take charge and be a leader. Amidst all the changes he still had this infectious desire to have fun. That helped him never lose sight of something bigger and better beyond all the change and more change. Now as I look over those years, I see the truth of who was really in charge. I thought I was the one teaching him, but actually he was the one teaching me.

Priceless gifts are offered through change, from a variety of sources. From a boy who put the cha-cha-cha in every happy birthday song to the man we sang happy birthday to last weekend. Each one providing wisdom to us by the changes they encountered in their life, ultimately teaching us to Be the Change.

Are you fully informed?

Informed consent is a term used quite often in the health care environment. We appear to be informed by colored brochures and precisely titled information. They assist us in giving consent by a simple signature on a form. However, before consenting to anything medically we should ask ourselves, are we as patients and families really fully informed?

The complexity of being fully informed as well as the ability to make an informed choice was defined in a few stories I was recently told. In every doctor appointment or hospitalization we are asked for consent to many things, whether we realize it or not.
The concern lies in the following:
-Have we been given all the information necessary to make an informed decision?
-Have we been given adequate time to ask questions in order to safely consent?
-Have we been given the proper environment to accurately weigh all the options in order to give an informed consent?

At most medical appointments, we are given large doses of information. It makes having a notebook and pen with you at all times, a necessity. Medical data is complex with varied interpretations frequently exceeding one person’s capacity to absorb and process it. There is often a need for follow up conversation, either by phone or appointment, especially following a lengthy appointment involving life altering decisions. It’s not unusual to return home, where the stress of the appointment lessens, and new concerns or questions come to mind. Writing them down in your trusty notebook allows for them to not be forgotten, giving you the peace of mind they will be addressed later.

Sometimes patients and families are given only the data that lines up with the medical providers personal opinion or agenda. Fully informed choices are made based on all the information available with the opinions and agenda of both patient and provider presented and communicated as partners.

Consider the following questions about any diagnosis or treatment:
-Have I been given all the information, not just what others consider important?
-Have I been given all the treatment options including holistic and controversial?
-Have I been given all the risks, both physical and emotional?

With any medical appointment, a patient enters into a fee for service partnership with a provider. Not only are you paying them to do a service for you, but their profession promises to provide a level of respect and service that, quite frankly, is often lacking in our current heath care. Patients and family members are frustrated because of the many times they sense annoyance from medical staff in tense facial expressions, grumpy tone of voice or even words that too often rush our choices and decisions. It leaves patients and families feeling somewhat inferior for asking another question or asking that information be repeated at a time when they should be feeling confident and assured. Don’t allow that poor conduct to overshadow your expectation for safe, high quality service, which is valued in any good partnership.

Eleanor Roosevelt said, “No-one can make you feel inferior with out your consent.”

Be the Change says be fully informed before you give consent.