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Do you ever feel like a lonely caregiver?
Caregiver stress syndrome (CSS), more commonly known as caregiver burnout, is a real struggle that affects many. The most commonly acknowledged symptoms are fatigue and a lack of self-care. What isn’t discussed enough is the loneliness that caregivers sometimes experience, especially when they are the primary/only caregiver for one or more people.
I touched on this in my column, “Battling the exhaustion that comes with caregiver stress syndrome”. In my experience, fatigue contributes to loneliness because, even when there are opportunities to socialize, I often prefer to sleep.
What symptoms of CSS have you experienced, and is loneliness one of them? How do you combat the fatigue and loneliness?
If you are a patient, have you noticed these symptoms in your caregiver, and if so, was there anything you have said or done to try and help them?
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3 Replies
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Absolutely, I experience CSS. Even though I’m not a true caregiver, mostly because my son was an adult by time he was diagnosed, I think him being an adult and thinking it was his responsibility to relieve my anxiety about his care rather than letting me do anything to help caused more stress than anything. Now that he has been healthy since his PTE surgery in 2017, I still sometimes wonder if he did start experiencing symptoms again, whether he would tell me so I could help share his burden. While I don’t experience physical anything because of CSS, the emotional stress can sometimes be more daunting than the physical.
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@V.R. Peterson I know a little bit of what you are feeling. I went from being in full care of Cullen to hardly doing anything but worrying since he became an adult. He attends appointments without me, and I recently updated his medication list to find out that my list needed a lot of updating.
Cullen was diagnosed when he was 8 so I had the advantage of him being able to communicate his health problems. I always thought about PH parents of babies and toddlers and the challenges from not being able to ask them how they are feeling. I had not thought about what it must be like for parents whose children are diagnosed as adults. It sounds like a different version of the same concern…what are they not telling me!
I’ve asked Cullen to keep me in the loop as best he can because it’s important that every patient has someone who can speak for them if God forbid, they are unable to answer for themselves. I know as a mom how much you want your son to tell you everything about his health, and I hope he shares enough to keep you out of the dark. He is married to a nurse, correct? I’m going to assume she knows what is most important regarding your son’s health so that she can advocate when needed and most important, fill you in. Do you find comfort in knowing he has her?
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@Colleen please check your messages for my answer to your question.
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