I’m a 52-year-old mom with dementia — this is what it really feels like
A middle-aged mom who suffers from early-onset dementia has shared a heartbreaking video detailing what it feels like to live with the devastating disease.
Jana Nelson, 52, was diagnosed with hydrocephalus in 2012 and her symptoms have gradually become more severe over the past decade.
Hydrocephalus, a neurological disorder that can cause dementia, is characterized by an abnormal buildup of cerebrospinal fluid in the cavities of the brain. According to the NIH, the excess fluid causes the ventricles to widen, putting harmful pressure on the brain’s tissues.
In her TikTok video, Idaho-based Nelson noted her earliest symptom of the disorder, saying she was plagued by constant tiredness and a need to sleep.
“Being in the dream state felt so good that I would just want to stay there,” she declared in the viral clip, which has clocked up more than 1 million views.
Nelson soon found herself growing more angry and irritated, and believed that people were “patronizing” because of the tone they used to talk to her.
“I felt like they weren’t listening good enough,” she stated.
However, the mom-of-four later learned that people were talking to her in such a way because she was repeating the same questions and was unable to finish her sentences.
“All the time, you feel like people are playing tricks on you and lying to you about the things that you’ve done or where things turned up or disappeared. You feel like they’re hiding things behind your back,” the brunette told viewers.
Realizing that she was unable to hold ordinary conversations with both strangers and acquaintances, Nelson declared that the disease has left her feeling “introverted and agoraphobic.”
“I became terrified of having to interact with other people,” she mournfully admitted. “I was just comfortable with my family and I became more and more quiet.”
In recent years, Nelson’s dementia has worsened, with the mom struggling to control her bladder and bowel movements and needing help for everyday activities, such as cooking.
Her memory is also failing her.
“I feel betrayed by my brain,” she concluded in her emotional clip. “There’s things I should remember, like doing the eulogy for my brother, planning his funeral and not remembering a thing — just what I’m told.”
Thousands of viewers flocked to the comments section beneath Nelson’s video, praising her for her courage and honesty.
“Thank you for sharing! Your courage is inspiring and your honesty is humbling. I’ve never heard this explained so well,” one wrote.
“How generous of you to be so vulnerable and honest. This video is such a gift. Thank you! I’m so sorry that this is happening to you,” a second chimed in.
Meanwhile, others praised the brave brunette for raising awareness about the realities of early-onset dementia.
“I had no idea people as young as yourself could suffer from dementia. Thank you for sharing and educating others,” one declared.
Nelson regularly updates followers about her health battle on her TikTok account, were she posts under the handle @welcome2dementia. She additionally pens a blog under the same name.
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