WARNING: this blog is about shit, literally.
I’m not writing this blog for shock effect or pity, but to provide a very honest window into the challenges of taking care of someone with dementia. I’m writing this because in certain ways caring for a person with dementia is so, so different than caring for someone with another disease, and this incident is a perfect example of it. Studies have found higher levels of depression in caregivers of people with dementia than caregivers of other diseases. Here’s a little glimpse as to why that may be.
I walk into my mom’s room at 10:30 at night to check on her and encounter a horrifying, smelly scene. 15 minutes earlier I had changed her and can't believe what I see. Shit. Shit on my mother’s hand, shit on her face, shit on her hair, her pajamas, the sheets, pillowcases, blankets. It’s not the dirty mess that's shocking. Yep, shit happens (ha ha ha) when you’re dealing with a sick person or the elderly. It’s the fact that she is completely unfazed, indeed unaware of her own condition literally causes my chest to ache. No embarrassment, no disgust, nothing. In fact when I jerk my hand back as she reaches for me shrieking “ca ca!”, she calmly tells me it’s chocolate.
I freeze for a few seconds before going into hazmat mode and just look at her. I look at her covered in shit and wonder where did my mom go? What happened to Phd., the teacher, the fashionista? This is what hurts, what's truly gross. Caring for my mom often feels like a cruel practical joke being played on me by the disease and her. With other diseases the sick person and the caregiver are on the same team fighting against the disease. The person you love is still there and you can both stand together, but dementia swallows up your loved one making it an uneven fight. Dementia has destroyed the very essence of my mom, leaving behind a shell that lures me in and then turns on me. It’s two against one and that’s so unfair. It's a dirty fight that we caregivers fight alone.
Thankfully we’re not really alone because there are wonderful support groups where we can all cry and laugh at the dark, dark comedy that we’ve been sucked into. Believe me you need to go to one. You’ll find comfort from people who really know what you’re talking about and feel good about the support you can give others. Here in L.A. Alzheimer’s Los Angeles and Leeza’s Care Connection have wonderful groups.
Go!!!
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