chronic illness

My Turn Being The Spouse, Not Patient: 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?

chronic illnessfaithfamily

Encouragement for Caregivers

I am so thankful that for today’s prompt my husband graciously volunteered to share about his experience as a caregiver and offer support and encouragement for other caregivers! As we all know chronic illness affects more than just the patient! I am so thankful that God has blessed me with such a strong and tender husband, caregiver, and advocate!


Caregiver–it’s easy to imply what such a person does.  Or is it?

Obviously we know caregivers provide care for others (you guessed it!).  Yet it is impossible to understand what all goes into caregiving unless you are personally providing care for someone else.

When we think of caregivers, we tend to think of those who work in nursing homes, hospice care centers, hospitals, etc…  We also tend to think of elderly couples where one person’s health is in serious decline and the other must provide around the clock care.  These are all true scenarios and many others exist as well.  However, there are several circumstances in particular that I believe go overlooked.  Many involve those who care for loved ones living with chronic illnesses such as endometriosis, fibromyalgia, Chron’s, and many others.  This is obviously close to my heart because my wife lives with several chronic illnesses.  The past several years have been very challenging.  In addition to Jamee’s health struggles, we are attempting to raise an energetic three (almost four) year old.  In case you do not know, ALL three year olds are energetic.  It’s just how they are!

So if you are providing care for someone, how can you stay positive?  Healthy?  Sane?  By no means do I have caregiving perfected, but I have learned a lot over time and would like to offer you some encouragement and advice.

You have to take care of yourself

When we’re so focused on taking care of others, we tend to overlook our own well-being.  How can we care for those we love if we are not taking care of ourselves?  Depending on your situation, it may be difficult to find time for yourself and truly care for yourself.  You may be the only one providing care.  Nevertheless, sometimes we have to learn to ask for help and realize life is not meant to be lived in isolation.  Lone rangers end up dead rangers.

Make time to do things you enjoy
This continues m first point.  A part of taking care of yourself is not forgetting who you are (your likes, interests, hobbies, the things that make you feel alive).  For me this means having time (as limited as it may be) to do personal reading, to play guitar, to jam with other musicians, and so forth.  What about you?  Sometimes we end up feeling so numb to the world.  We lose interest in the things we love to do.  If we are not careful, we can end up neck-deep in depression and burnout ourselves.  Again, by taking care of ourselves we are able to better care for those we love.

Talk to a mentor/counselor frequently
I am not ashamed to tell you that once a week, I speak with a counselor.  I am blessed because I live within a mile of Gardner-Webb University (where my wife and I attended undergrad and divinity school).  As an alumnus of GWU, I can speak with a counselor free of charge.  I realize not all people have this luxury.  If you can not afford to talk with a counselor, make sure you are talking with a trusted mentor.  This needs to be someone who you can say whatever you want to say and whatever you need to say to express your frustrations, disappointments, victories, losses, ups, downs, and so forth.  The human body is not meant to hold in certain amounts of grief/pain/loss.

Lean back on your faith
I am not sure about your personal beliefs, but the main way I pull through as a caregiver is plain and simple: the love of Jesus Christ.  I personally believe that God is love (see 1 John 3).  I believe we do not understand what love truly is until we have a relationship with God who after all, IS LOVE.  I do not possess within me the strength, love, patience, and grace needed to care for my wife.  However, Christ does.  By staying connected to Him, I learn how to love as He loves, serve as He serves, encourage as He encourages, and so on.  It is only through my relationship with Christ that I am able to truly love and care for my wife.

I hope some of this helps.  Again, all of this is easy to type, but hard to live out every single minute of the day.  Hang in there.  Do not lose hope.  Cling to the love of God.

God always ~ John

What encouragement do you have to offer caregivers?