To you who read this it is probably because you were thrust into a world that you did not want, and you are desperate for understanding, assistance, comfort and knowledge about the future. At least that is what I want.
For me it started so abruptly 3 1/2 months ago when Mom fell and broke her hip. I rehab broken hips all the time as a physical therapist assistant. No big deal. But 6 weeks post op in the course of 1 hour everything changed. She began to hallucinate and her cognition was abruptly reduced. Because of her soft bones and recent hardware in her body, we couldn’t do an MRI to check for a stroke. We hoped taking her home would change things. It didn’t.
We did what I did not want to do–started her on antipsychotics (Abilify). In the course of 24 hours her head fell to her chest, she couldn’t hardly move, walk, or talk and looked like someone straight from the nursing home. Her hallucinations persisted. Never having felt so bad for making the decision to start her on it, I took her off slowly. I had to taper because the meds are so addictive–moreso than heroin. A fact I only found out by research. Within 48 hours her head came back up, she began to walk better (still with walker and big limp from broken hip), and began to interact. Abilify went to the trash.
I had browsed across Lewy Body dementia and thought maybe mom had it. She fit all the symptoms. We went to the neurologist. I suggested Lewy Body dementia and readily agreed she had all the signs and confirmed the diagnosis. I researched more. What I found I didn’t like.
1) Patients with Lewy Body Dementia (LBD) have severe reactions to medicines that are Benzodiazapenes (Ativan, Lexapro, Lorazapem, Xanax, etc…), antipsychotic medicines (like Abilify) and antihistamines. This is what she received in the hospital.
2) Lewy bodies is hard to diagnose but general anaesthesia will cause rapid progress of the disease. Mom just had been through a hip fracture surgery.
3) LBD patients live on average 5-7 years.
4) It is the worst for of dementia, the ONE disease my mom never wanted to die from.
What’s worse is that mom is a family practice nurse practitioner of 50 years. She knows what is going on. And she sobs uncontrollably. In the midst of hallucinations that dominate 80% of her speech and thinking.
Welcome to the world we never wanted. I love the Lord. I love my mother. I want choose to see the life and love of my mother and desire this to triumph over death and sickness.