Caregiver Perspective: Sorry I Haven't Been Able to Write Lately
I guess most of you who have read my column in the past think I’ve stopped writing. I have to admit that I’ve considered whether I should do that because my time to do anything at all these days is so limited but the publishers of this site are so kind and they have asked me to share my stories whenever I get the opportunity so I’ll keep doing so for as long as I can.
See, here’s what’s happened. As you may recall, for the past six years, I’ve been very fortunate to able to work from home so I could care for Lynn, do my job and manage our home all at the same time. It was difficult but I had help during the day most of the time and since I didn’t have to drive into work, the time saved and the flexibility of hours, allowed me to work whenever and for as long as I needed. Unexpectedly one day in November, my boss asked me to stop working from home and come back to work on site. For years, we had not had the office space available for me to have a place to work there on site but recently the department had acquired more space making it possible for me to once again have an office. Therefore, she preferred for me to return to work.
I have to admit, I panicked. I honestly could not see how I would be able to manage to come into work every day, still care for him in the way he needed and get enough rest to be able to function. I really had no choice but to come back into work if I wanted to keep my job so I make a counter proposal (which she accepted) and asked if I could do flexible hours. I proposed flexible scheduling, liberal use of Family Medical Leave time, and making up hours lost during the week on the weekend. By using the combination, I’m able to still put in all the number of required hours per week necessary to be full time but I don’t have a second to spare anymore.
The daily commute
I live about an hour away from my job so going into work causes me to lose two hours of day of potentially productive time. I hate that travel time. Our schedule is so tight that I’m fortunate to get five hours of sleep each night and usually that sleep is interrupted at least once in order to cath Lynn and to exercise his legs. Driving to and from work each day is very dangerous for me unfortunately as I struggle to stay awake and often find myself nearly nodding off. I pray constantly to stay awake. I take lots of caffeine and am trying all sorts of activities to try to stay alert.
It's a mixed blessing
Being back among my coworkers is a mixed blessing. I truly enjoy the social interaction. I’ve felt so isolated being unable to leave my house for days at a time and having no interaction with anyone other than those who came to see us made my exposure to the world very narrow. Being out among so many now is very exciting and stimulating. I’m loving that part of it, but on the other hand I no longer have a spare second in my life. Every second of every day is accounted for and used to either be providing for Lynn’s care or getting us ready for me to go to work or me completing work for my job. I have no “me” time expect when I shower. It takes me three - four hours each morning to get us ready for me to go to work. Our night routine take at least seven to do all the night preparation work before I start the four-hour process for baths, dinner, and feeding. Many nights I’ve been so tired I had to lie down for a short nap just to have enough energy to finish getting Lynn ready for whatever we were doing.
All-in-all though it’s going well. We’re both adjusting to the change. As we usually do, we’re taking the challenges one day at a time and we spend a lot of time in prayer asking for God’s intervention for us as we just take it one day at a time and adjust to this new, new normal.
Does your employer provide workplace accommodations due to your MS?