Job Responsibilities on ‘Wife’ Support

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by Annie Dixon |

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When I first became my husband’s caregiver on his release from a three-week critical care hospitalization, it was a full-time commitment. Still, I thought I would be able to manage some of my job responsibilities part time while working from home.

I had always struggled to juggle paperwork and phone calls in the office, and hands-on work in the studio. Now, I was abdicating production work while he convalesced, so I thought I should be able to multitask a bit of paperwork and nursing. After all, I was also giving up time spent on commuting and picking up lunch. Besides, I would have all that time to myself while he napped.

Theory versus reality

Ronald did sleep a lot. The main symptom of atypical hemolytic uremic syndrome (aHUS) is fatigue, and he dozed off easily. But because the cycle was erratic, it was hard to work around it. Sometimes, he was out for a few solid hours. Other times, he was done with his power nap by the time I had finished washing the lunch dishes.

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That’s Me in the Corner, Losing My Ambition

As we planned our return home from the hospital, I suggested we take up residence in the first floor guest room. But my husband was determined to recreate as normal a life as possible, which meant ascending the stairs to our room. He stayed there for the first week, which meant I got a workout with every meal and load of laundry. And his determination to attempt normal activities such as showering, shaving, and dressing required me to stay nearby to assist. It was all very admirable and hopeful, but it left me little time or focus for anything else.

At the end of each day, I wondered where all the time had gone. Despite keeping the laptop and the cellphone with me, I had spent only fleeting minutes on either. What had I managed to accomplish in twice the number of hours I used to spend at work?

Establishing priorities

My great accomplishment was keeping my husband alive. I had taken his blood pressure and temperature, given him pills and insulin, fed him and encouraged him. His numbers were logged to chart his progress and nurse him back to health. This was the most important responsibility I had now — or had ever had.

I remembered the good old days when I thought the life of a small business owner was a lot of work and responsibility. It was, and still is. But what was all that effort and obligation for? As Samuel Johnson put it succinctly over 200 years ago, “To be happy at home is the ultimate result of all ambition.”

My husband was still on life support. I realized I could not expect more than that for our business. If both survived the coming year, I would consider it a success. If only one was going to make it, I was prioritizing the fellow who makes me happy at home.

Time management for a caregiver

Just as I made sure my patient got his medications and nourishment before any other activities, I had to organize my job tasks. I looked at hard deadlines such as payroll, taxes, and contract proposals, and carved time out of my sleep for them. The alarm was set for 5 or 6 a.m., and I soon woke without it most mornings, heading to my desk in my pajamas. I calculated paychecks and square footage, emailed totals to the accountant and purchase orders to suppliers, while sipping two cups of coffee as the sun came up.

By the time my favorite client called to tell me he was awake, I had completed the must-do tasks. The to-do list still seemed to grow, but I was less anxious about it. As my husband’s day began, the essentials of my workday were complete, and I could give him my full attention. If I got nothing else done for the business, it was fine. There is only so much time in the day, and the point was to spend it with him. Maybe I would get a bit more work done while he napped in the afternoon. Or, maybe I would join him if I was tired from rising early for my first shift. That’s more than time management; that’s what I call quality time.

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Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.

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