When Mom Is Tired, Caregiving Is Hard

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by Betty Vertin |

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I saw a meme today that said, “I need a day between every day to recover from the day before and prepare for the upcoming day.” I could not have identified with anything more today.

If you haven’t guessed it yet, I am exhausted. I was a single caregiver and parent last week because my husband was traveling for work. I did the lifting and transferring of our three sons with Duchenne muscular dystrophy, and I was the one giving medicine and providing home stretching and other therapies. I woke up earlier than usual to get all the kids ready for school, and stayed up later than usual to make sure the teenagers were in bed. It was taxing.

In my column last week, I talked about anxiety and Duchenne and how it’s affected my oldest son, Max. I think I jinxed myself, because I shared that he’s been doing well, but things didn’t go so well after submitting that column. His dad being away triggered his fears and anxiety, and we had some late, frustrating nights. His anxiety is still out of control several days later, and he didn’t get to sleep until after midnight last night. It was only a couple restless hours of sleep for Mom after everything settled down.

The start of school is taking its toll. We as a family are still adjusting to the earlier mornings and busier days. We are a large family, and the kids are involved in many activities, so we have something almost every night.

All that said, I am tired. I want to sleep and get a massage and take a vacation, and did I mention sleep? I would settle for a date night, but those are hard to come by.

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We have had seasons of excellent respite help and babysitters, which allowed me to take a break and rest. Before the pandemic, we had a great provider who came to the house two times a week. The provider was a male, which is perfect for three boys who need extra help, but he also learned to give medication, stretch the boys, and do cough assist with them. Additionally, he had the patience of a saint, which is required to help Charlie, my youngest son, with his homework! Unfortunately, once the pandemic hit, we weren’t comfortable with help in the house.

We are now in a season of no help. My mother-in-law lives close by, and she will help with rides, but the support she can provide is limited. Her vehicle isn’t accessible (and I don’t expect it to be), so she can only give rides to the kids without wheelchairs. Additionally, she is a small woman, and cannot lift or transfer her grandsons, who most likely weigh more than her.

We are actively looking for respite help now, but we have had no luck. Before COVID-19, our sons were all walking, and the level of care they needed was easier to provide. However, our middle son, Rowen, fell and broke his leg during the pandemic, and no longer walks independently. That extra level of care has made it challenging to find help.

My husband is home this week, and he will help with the lifting and take the late teenager shift so I can go to bed early. Things will get better. I’ll get back to my average level of fatigue that allows me to function with patience and a smile.

I live with a level of tiredness that doesn’t go away, even with extra sleep. It comes from years of being on this journey; the grief I experience every time the boys lose abilities or strength; the stress from medical appointments, where the news gets harder to hear the older the boys get; the way I question every decision I make about their care, meds, and equipment.

I experience guilt for having to depend on their siblings for help, or because my boys are doing better than some of my friends’ sons. I envy the sons who are doing better than mine.

The emotions associated with parenting and caring for my sons with Duchenne are heavy. That is the fatigue I am used to dealing with, but when emotional fatigue joins physical exhaustion, I struggle.

I wish I were concluding this column with a how-to list on taking good care of yourself while caring for others, but I don’t know what’s on that list yet. There will be a season when I have more help, and there will be a vacation. In the meantime, I will do the little things, like walking every day, drinking water, taking naps when I can, and accepting offered help.

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Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.

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