When my mother first showed signs of delirium in mid-February, and the hospital said it was a UTI, you all were so helpful in educating me about the dangers of UTIs with the elderly.
Now it's been nearly 5 months and my mother's decline has been tremendous. If I'm being honest with myself, she started declining years ago, but she is only 76 (and I am 32) and I never thought it could be any form of dementia. I lived in a world where I trusted her decisions to take care of herself, trusted her doctors. But if I look back...
2-3 years ago it was constant hospitalizations for anxiety/panic attacks. Her doctors put her on psychotropic medications (for supposed schizo/bipolar) that she kept starting and stopping on her own... which caused a lot of tension and anger in our family. Then the tremors came, and she blamed the meds. During those years, I think she changed her medications every 3 months. I stopped keeping track. Oh yeah... and she confessed to be of having visual hallucinations she kept hidden for a few years.
Months after the COVID lockdown started in March 2020, after I begged her from far away (I live in a different state) to not leave her home and organized her grocery delivery, she started telling me she was losing interest in bathing -- and it scared her! We got her a private duty for a few days a week. It helped her for a while, but then she started refusing the care's help too.
I arrived to check on things with her in Jan 2021, and then she had her epic decline in Feb 2021 w/ the UTIs. Literally one day she was walking on her own (with a little bit of shuffling), talking coherent sentences, able to feed herself.... to bedbound, incoherent, emotions all over the place, unable to use the bathroom, feed herself, basically do anything for herself. I walked her into that hospital one day and she became a different person the next.
It's now been months of rehabs, hospitals, a stint at home, and now a nursing home. In these 4 months she's lost even more ability and it breaks my heart to say that now we can't even talk on the phone. She stays mute when I call, as if she doesn't understand the phone. She moans, she yells, she screams, but no words.
A neurologist believes it to be Lewy Body Dementia, but even she says this decline has been very rapid. Is this normal? I don't know what advanced stage dementia looks like... is this it? Can psychological issues prior affect the gravity of dementia? My mother was depressed my whole life, and when that earlier diagnosis of bipolar/schizophrenia came we thought "that could be it." She was difficult, that's the truth...
My biggest fear is that I'm so inexperienced with the healthcare system that I'm forgetting key questions for the doctors... and nursing homes are no place for proactive care it seems.
My mind has been consumed by all of this... I'm really having trouble accepting that it happened so fast. And that maybe I could've been paying better attention.