Friday, December 19, 2014
When the Roles Reverse
This week has been a whirlwind of scares and changes that I wasn't prepared to encounter.
My husband has been pretty healthy his whole adult life and hasn't seen a doctor for anything in over 20 years. Complete opposite of us FAPers. Everything changed this week in an instant, starting with a phone call early Tuesday morning.
After a couple months of excessive urination and thirst resulting in a long battle with severe leg cramps, he finally agreed to get lab work on Monday afternoon. Tuesday morning my doctor called us and informed us that his blood sugar was almost 1000 and he needed to go to the ER. We found out that day that he was Type 1 Diabetic and he had been without insurance for the entire year yet we had never received any cancellation notices. With insulin dependent diabetes, he would be required to find a new job within the next few months.
We had no doctor or insurance for him, about to be without a job, and were accruing plenty of medical bills for this serious new diagnosis. We were in a nightmare situation and the light at the end of the tunnel was growing dimmer at every turn. I was terrified of so many things that were happening and could happen yet I was the caregiver now for the first time and I needed to remain strong and calm for him. He didn't need the extra stress of worrying about his wife going to pieces on him while he was at risk of a diabetic coma or death. What a different role, from patient to caregiver. Everything was on me and I didn't know what to do.
Unexpectedly our luck began to change. My work allowed me to enroll him on my insurance for his coverage to start January 1st and the hospital gave me a large discount for making a relatively small payment up front. His employer was making accommodations to keep him employed. Now I just needed for him to become stable and for me to find a way through the next month until he had insurance and a doctor. By early afternoon, I was no longer fearful, I was strong and determined. And on an adrenaline rush. Nothing and no one was going to stand in my way. I was energized but that can last only so long when you're splitting yourself between various responsibilities. I spent the day and evening tending to him, tackling our issues, returning to work, and taking care of household needs.
By Wednesday morning, I no longer had the energy or the adrenaline that sustained me during the chaos of that first day. I could barely function mentally but I had a lot to do at work and it hurt to be away from him. I knew that I had to take better care of myself or I'd need a caregiver myself if I weren't more careful. I turned my focus to the evening, I had to get more sleep before rising early again to visit and help my husband with his morning routine. I needed to prepare for a new battle that day. How was I going to be able to afford his insulin and supplies before his insurance started and how was I going to have enough supplies to last him until we were able to obtain an appointment with a doctor?
I recalled all the time my parents and family members took care of me, of the time my mother and I were both hospitalized at the same time. How did my dad do it!? He worked, visited us, and took care of the house and land. I now knew how exhausted he must have been. How exhausted they all must have been.
The worry and the need for a plan and a safety plan were starting to become overwhelming as I tried to resolve every issue the best I could. I worried about his health and his mental health, the adjustment required to transition from caregiver to a new patient is a lot for an individual as well. How was he doing, what did I need to do to help him adjust and to keep him motivated for his health as well?
My mind thought back to all of those who have helped care for me, they must have felt as helpless and overwhelmed as I did. As a patient, we feel so sick at times that we can't spend our energy on the same things as our caregivers. Our bodies need that energy for healing and survival. We barely have a chance to process our health changes and situation before we're thrown to the wolves of the illness and what is required for self care. And so our caregivers are left with all the worry and to also deal with our own adjustment issues yet we barely notice. So often our caregivers only show us their battle faces, not their exhausted, terrified, overwhelmed with emotion faces.
The universe smiled upon us on the last day. We received education from a diabetes nurse who helped us navigate what we needed and helped us obtain that much needed doctor appointment. She has remained with us as well as one of his ICU nurses. They're only a phone call or email away if more guidance is needed. I no longer feel alone in navigating the terrain of diabetes. We have a long journey; but we are well supported and well guided.
In the matter of 3 days, our world turned upside down and resurfaced different, but upright. At the end of it all, I've been left with feelings of intense gratitude toward so many people and for the favorable outcomes we found when we weren't entitled to such favorable outcomes. Not all situations are so lucky. We were fortunate to obtain resolution so quickly for so many issues. And I can't help but think, if it weren't for my own health issues that have shaped myself and my life in so many facets...I wouldn't have the same fortitude as I needed to complete my role in our crisis and maintain my new role as caregiver.
The struggle between patient and caregiver roles are real and they deserve our attention. We must draw on our strengths and our support systems to help each other cope with the changes in roles. Together, patient and caregiver can do a lot but not as much if separate.
Show your caregiver appreciation and allow them their much needed time without our demands. Communicate with each other and discuss what each one needs. This is a partnership and it deserves both people.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.