My Turn Being The Spouse, Not Patient: Importance of Caregiver Support

Importance-of-Caregiver-Support

 

My husband and I are both spoonies. John has been type 1 diabetic since he was 8  years old and has spent every summer for the last 20 years at Camp Carolina Trails, a summer camp designed to educate and empower young people with diabetes. He started out as a camper and is now the assistant director. One of the things that inspires me the most about my husband is his dedication to raising awareness and and support for those living with diabetes. His motto is “diabetes is a gift, not a curse” as he sees his diabetes as a way to minister and serve others. Health activism is something we feel deeply passionate about and it is awesome to share this passion and support and encourage one another along the way.

In the 12 years that John and I have been together, we have been lucky to not encounter any major scares outside of the “normal” highs and lows that accompany life with diabetes. No passing out from blood sugars that are too low or hospitalizations from ketones. We have never even had to visit the ER.

Until last week.

After entering the wrong bolus amount on his insulin pump, we were very concerned about the possibility of a dangerous low so we headed to the ER to be safe. Thankfully other than Zofran for nausea, John did not require any other intervention but were glad that we made the trip just in case.

Even though it was only an IV, I absolutely hated seeing John poked and prodded and not feeling well in the hospital bed. I just wanted to make him feel better and would have easily taken his place if I could have.

It was in that moment that I realized what John has had to endure during my many surgeries and hospitalizations over the last 12 years. It hurt to watch my husband get an IV but in the scope of things, I had it easy.

I never had to kiss my husband goodbye and watch him get rolled away to the OR. I never had to sit in the waiting room for hours waiting on a call from the doctor to give an update on my husband’s surgery. I never had to sleep in those unbelievablely uncomfortable chairs while my husband was in a hospital bed and hooked up to machines. I never had to get a phone call telling me to get home as soon as I could because my husband had just been readmitted due to complications.

I cannot even begin to imagine what it must have been like to be in his shoes not only once but time and time again.

I know what it felt like to go through countless appointments, treatments, surgeries and hospitalizations. I know what the physical pain felt like. I know how emotionally, mentally, and spiritually exhausting chronic illness can be. I know what it felt like to be the patient.

When you are the patient, I think it is easy to overlook the experience of the caregiver because we can so easily become wrapped up in our own. It is easy to underestimate the burden and exhaustion that comes with being a caregiver and the helplessness one feels when you have to see a loved one suffer and not being able to fix it. It is easy to not see the loneliness that comes with the job of caregiver. The pain and grief of chronic illness is not limited to the patient.

Last week served as a powerful reminder of the importance of caregiver support and deepened my already vast appreciation for John as my husband and my caregiver. I am positive he never imagined that it would be  a role that he would have to take on so early in life but the love, attention, and support he provides is what gets me through the day. I am so thankful for him every minute of every day and thank God that He gave me such an amazing partner to walk through the journey with me and even carry me when I couldn’t move forward on my own. There are not enough words to describe how lucky I am to have him as my husband, how proud I am to be his wife, and how inspired I am by him each and every day.

Have you ever had to take on the role of caregiver? If so, how has it changed your perspective of chronic illness?

What If We Checked No: Answering The Medical Questionnaire

A New Kind of Normal Adoption Month - June 2014

Today is week 2 of Adoption Month here at A New Kind of Normal! If you missed week 1, you can catch up by checking out my advice on getting started with the adoption process!

The “paper chase” may be one of the most stressful steps of the adoption process. Ok, all steps are pretty stressful but at this stage of the process (which occurs between having your application approved and completing the home study), you may feel like you are buried beneath a mountain of paperwork. Thankfully now a lot of the required paperwork can be submitted online so you don’t find yourself living at the post office. Adoption agencies can now offer online adoption management services that can expedite the paperwork process, improves communication, and provides readily available access to status updates.

Between background checks, submitting medical clearance forms from your physicians, and writing a seemingly endless autobiography, you begin to wonder if you will ever make it through (and if you have an ounce of privacy left). Our autobiography questions and subsequent interview questions covered everything from how we were disciplined as a child to how our extended family feels about adoption to how infertility has affected our sex life. While it seems overly invasive, it is important to remember that the process is not only about completely the mandated requirements for adoption but in order to know you personally, as a couple. and as a family in order to match the best match possible for your family.

Of all of the vast variety of forms we had to fill out as a part of the process, answering the adoption medical questionnaire regarding what health conditions or needs we were open to was definitely the hardest to fill out. On one had we felt like if we had had a biological child we would not have had the option to choose which health issues we wanted to avoid in our child but on the other hand, we knew we needed to take each line of that questionnaire into serious consideration. While we were beyond ready to become parents and just wanted to have a child to love, we knew we needed to take this opportunity to be as prepared as absolutely possible to parent a child with physical, mental, or emotional needs.

The questionnaire covered physical issues as simple as having a visible birthmark to more serious issues such as muscular dystrophy or cystic fibrosis as well as possible transmittable diseases from a birth parent such as Hepatitis or HIV. The questionnaire also covered issues such as a family history of mental illness (or an older child already receiving a diagnosis) and a family history of learning disabilities. Of course it is impossible to know everything to know everything at the time of placement but this questionnaire sought to allow the adoptive family to be as prepared (mentally, emotionally, and financially) to parent a child with needs.

The questionnaire had the options of yes, no, and maybe next to each of the possibilities. Our agency advised us that saying “maybe” was the same as saying “yes” so take the option seriously (versus having the attitude of I’ll think about it later).  They shared the story of a couple just as eager to become parents as we were and they checked yes down the list in efforts to welcome a child into their family as quickly as possible. They ended up becoming parents of twin toddlers who both had cleft lip and cleft palette and had not yet had corrective surgery. All of their family was 10+ hours away so they found themselves over their heads and in desperate need of support. The story served as a reminder of the seriousness of each line of that questionnaire.

Because of our history and the direction we felt God was leading us in, we knew there were certain needs we would be open to in addition to being open to any gender or any race. I will not be sharing specifics of our selections for privacy reasons (not only for our family but Abby’s birth family). When we got the call to be matched with our daughter, our social worker said we have a baby girl that we would like to place with you that has the possibility of having X. It was one of those blanks that we prayed long and hard over before making a decision to check yes. Even though there was a chance that she could have been sick, by the grace of God, Abby is absolutely 100% healthy but we have asked ourselves many times, “what if we had checked no?” If we had checked no to that box, we would have never received that phone call and we would have never been so amazingly blessed to have our daughter. Praise God that He led us to check yes and we did.

Every step of the adoption process is full of tough decisions. I cannot stress the importance of research, education, and support. There is always the possibility of the unknown but the purpose of the paper chase and home study process is to help you become as prepared as possible to welcome a child into your family via the miracle of adoption. Our social worker worked right alongside of us answering questions and recommending resources and our agency conducted group seminars where we would cover topics such as bonding and attachment and preparing for a special needs child but we would also have the opportunity to meet and connect with other adoptive families in waiting alongside us. Adoption Learning Partners is a wonderful resource before, during, and after the adoption process. Just as I visited the site to get the URL, I noted 3 that we need to take now.

If you are considering adoption as a way to expand your family, it is never too early to start considering which possibilities would best fit your family as well as starting praying for direction on how to grow your family. I took our being led to become a transracial family and being open to certain special needs a calling. We feel like God was leading us down a certain path, we followed in faith, and now have an absolutely gorgeous little girl!

 If you are considering adoption or just starting the process, have you taken any time to consider the needs of a child you would be open to? If you are an adoption veteran, how did this step of the process affect you?