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I saw a meme today that said, “I need a day between each day to recover from the day before and prepare for the day to come.” I couldn’t have identified with anything more today.
If you haven’t guessed it yet, I’m exhausted. I was a single caregiver and parent last week because my husband was traveling for work. I did the lifting and transfer of our three sons with Duchenne muscular dystrophy, and I was the one who gave the drugs and provided stretching at home and other therapies. I woke up earlier than usual to have all the kids ready for school and got up later than usual to make sure the teens were in bed. It was taxing.
In my column last week, I wrote about anxiety and Duchenne and how it affected my oldest son, Max. I think I hurt myself, because I said he was fine, but things didn’t go so well after I submitted this column. Her father’s absence triggered her fears and anxiety, and we had late and frustrating nights. His anxiety is still out of control days later, and he didn’t fall asleep until after midnight last night. It was only a few hours of restless sleep for Mom after everything calmed down.
Back to school is wreaking havoc. As a family, we always adapt to the early mornings and busier days. We are a big family and the kids participate in a lot of activities so we have something almost every night.
Having said that, I am tired. I want to sleep, get a massage and take a vacation, and did I mention sleeping? I’d settle for a date, but it’s hard to find.
We have had great seasons respite help and babysitters, which allowed me to take a break and rest. Before the pandemic, we had a super provider who came to our house twice a week. The provider was male, which is perfect for three boys who need extra help, but he also learned to give medicine, stretch boys, and do helps with cough with them. Plus, he had the patience of a saint, which is necessary to help Charlie, my youngest son, with his homework! Unfortunately, once the pandemic hit, we weren’t comfortable with helping around the house.
We are now in a season of no help. My mother-in-law lives nearby and she will help with the trips, but the support she can provide is limited. Her vehicle is not accessible (and I don’t expect it to be), so she can only drive children without a wheelchair. In addition, she is a small woman and she cannot lift or transfer her grandsons, who probably weigh more than her.
We are actively seeking respite assistance now, but we have had no luck. Before COVID-19, our sons all walked and the level of care they needed was easier to provide. However, our second son Rowen fell and broke his leg during the pandemic, and no longer walks alone. This extra level of care made it difficult to seek help.
My husband is home this week and he will help me with the lifting and take the late teen shift so I can go to bed early. Things will get better. I will regain my average level of fatigue which allows me to function with patience and a smile.
I live with a level of fatigue that doesn’t go away even with extra sleep. It has just been years of being on this trip; the mourning I feel every time the boys lose capacity or strength; the stress of medical appointments, where news becomes harder to hear as boys get older; how I question every decision I make about their care, medications and equipment.
I feel guilty about having to depend on siblings for help, or because my boys are doing better than some of my friends’ sons. I envy sons who do better than mine.
The emotions associated with parenthood and taking charge of my sons with Duchenne are heavy. It’s the fatigue I’m used to dealing with, but when emotional fatigue meets physical exhaustion, I struggle.
I would have liked to conclude this column with a list of tips for taking good care of yourself while taking care of others, but I’m not sure what’s on this list yet. There will be a season when I get more help, and there will be a vacation. In the meantime, I’ll do the little things like walk everyday, drink water, take naps when I can, and accept the help offered.
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To note: Muscular Dystrophy News is strictly a disease news and information site. 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 doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard the advice of a medical professional and do not 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 aim to spark discussion about issues related to muscular dystrophy.
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