By Donna Steigleder
I’m going to be brutally honest with you as I tell my story. I went from a nice person everyone liked to someone I didn’t even like due to burnout. Pay Attention, so it doesn’t happen to YOU.
I Love My Husband, but I’m Tired
I love my husband, but caregiving wears me out. I tried for years to do it on my own. I worked full-time and was a full-time caregiver using friends to cover for me when I went into work for many years. I did all my husband’s physical care before I left for work or after I came home. My friends only had to feed him and help him with his typing during the day (he’s an author).
Catheters Allowed Anyone to Stay with Him
I inserted an indwelling catheter before I left for work daily and removed it when I returned home. Therefore, his bathroom needs only involved them emptying the urine bag while I was away. By limiting the amount of time he had the continuous catheter, the risk of bladder and kidney infections was reduced. During the five years we managed this way, he had only one urinary tract infection.
Did I Mention I Was Tired?
I worked outside the home for 10 hours. Once home, I took over caregiving duties and house responsibilities, leaving only 5 hours to sleep at most. Many nights I got up at least once to catheterize Lynn and do other care activities. I was always tired and sleepy. When I was awake, I barely managed to put one foot in front of the other to keep going.
I felt guilty about everything–that I couldn’t give enough time to Lynn, to my job, to my children, or my elderly parents. I knew in my head I was doing my best but not in my heart. When I looked back at what I had accomplished at the end of each day, I never felt I had accomplished enough and would fall into an exhausted sleep, dissatisfied with what I had achieved.
I Cried Often
In the shower, I cried, often going home anywhere I could be alone because I didn’t want Lynn to know how I felt. He couldn’t help the situation though he often tried to “fix” it. His attempts to “fix” me just made me angry and frustrated, creating a rift between us at times. There was nothing he could do; I would try to explain, but he kept pushing until he finally gave up.
Money Was Tight
We were not eligible for Medicaid because my income was too high, but we wouldn’t have enough money to pay our bills if we hired someone to help. I thought about quitting my job, but if I did that, then I would not have health insurance (this was before the Affordable Care Act), so I keep going it alone. I felt like I carried a heavyweight around all the time.
I used to look happy and smiled a lot but started looking sad and withdrawn. No one talked to me about it other than to say, “Are you okay?” Some did suggest that I see someone, but I honestly could not figure out how I could find an opportunity to get away to an appointment regularly. I didn’t have anyone to stay with Lynn while I went. I didn’t want to go on work time because I already had a modified work schedule and feared how additional time off might affect my job.
Afraid of Failure
I was scared of letting people down all the time. I felt paralyzed and unable to make decisions regarding my own needs. I realize now that I needed someone to take the lead for me to help me get care. So, I did nothing.
Wanted to be Alone
Instead, I alienated everyone. I was short-tempered and frustrated. I was self-isolated because I didn’t want to be around anyone else. I told myself that I couldn’t spend time with anyone else with so much to do, so I only spent time working or caregiving and never allowed time for myself. I pushed everyone away—my friends, my coworkers, my colleagues, my family.
By the time I retired, I doubt that many realized I had left. I no longer had close contacts. Once I was well known, now even many in my own department didn’t know me, and I had acquired a reputation as being terse and not a willing team player. My failure to participate in group gatherings and my direct responses led to a controlling and inflexible reputation.