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.

Unexpected change

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.

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Comments

View Comments (5)
  • Donna Steigleder moderator author
    2 years ago

    Thanks to all of you for your words of encouragement. I miss them and miss hearing from you. I’m sure life will settle into a routine again at some point and hopefully then I’ll find more time to write. I keep dreaming about retiring but I’m not sure that’s an option yet though I am exploring the idea. In the meantime it’s just another bump in the road of life’s journey and something new to adapt to but one we’re dealing with together. Hope to talk to you again soon. God bless you all. Donna.

  • Scooter
    2 years ago

    Donna, I’m encouraged to know that you are holding on to your faith in God to take you through this time of difficulty. In my previous life before MS I played piano for gospel quartets and the songs I played then have much more meaning for me now. One song we sang which you’ve reminded me of is “One Day At A Time.”

  • potter
    2 years ago

    I also stand in awe of what you do daily, I wish you strength, energy and rest is seems you already have a lot of patience. Potter

  • Laura Kolaczkowski
    2 years ago

    It really is good to hear from you even though it took away precious minutes of your time from the rest of life. I’m so sorry to hear of this change in work routine – those hours in the car must be torturous as your mind races over the things that still need to be done. Is there any way you can carpool with someone for the company and help with driving?

    As always, i stand in awe of how you and Lynn manage all of this .

  • Kim Dolce moderator
    2 years ago

    Donna, I’m so glad to know your absence was not due to a change in Lynn’s health. I am so moved by your beautifully-written stories and appreciate your efforts to write them despite the strain on your time. I hope you’re situation will eventually ease up. You and Lynn really need to catch a break.

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