Today I managed to actually talk to Dr. Caliendo for about twenty minutes. My sister and I had a conference call with him and Sophia Mas from Stewart-Marchman ACT. Mom was in the room with them at the beginning of the call. Pay close attention to the footnotes I’ve added below.
Here are my notes from the call:
Mom in Dr. Caliendo’s office @ SMA w/ Sophia Mas;
[my sister] conferenced on call by me 1
Mom said she was excited to see [my son]
Sophia said mom misunderstood the cards I was sending, then took mom out of the room
Dr. Caliendo says mom displaying basic confusion, significant cognitive problems, but that she’s cooperative, says she is “developing dementia”
said mom is not competent to live alone
said mom “speaks in approximations”, such as that [my son] lives “with people out in California”
Judy the nurse said mom is forgetful and nervous, and that she asked for a job application 2
Sophia said mom thought it was 2005, and she didn’t know what month it was, even though there is a Christmas tree in the lobby and I keep sending her Christmas cards; she doesn’t know where she is
Judy the nurse said that mom is not paying attention to her own hygiene, isn’t showering, repeating that mom doesn’t know where she is
Sophia said mom needs to be reminded to eat, and that she gave mom a journal because mom asked for it, said she loves to write
Sophia said she tried to read mom’s journal entries, but they are confusing and rambling
Dr. Caliendo said he knows this is difficult, said mom should be on the west coast
said mom needs to be in a group home with no way to leave
(I asked Dr. Caliendo for his diagnosis and he simply said, “Dementia,” which led to previous comments)
[my sister] asked about a potential tumor, but Dr. Caliendo did not respond (he may simply have not heard her)
Sophia said mom has not asked about her pets since the middle of last week
[my sister] said mom seemed paranoid when she visited; Sophia said she was confused and fearful but not really paranoid
I asked about recovery.
Dr. Caliendo said “recovery” was a “tough term” because dementia is incurable
He said giving mom drugs “may help”; said having family nearby helps alleviate symptoms
Sophia talking about this experience as a “journey”
Sophia said mom says she has memory loss but not dementia 3
Dr. Caliendo said Rodney is on vacation this week, but that I need to talk to Rodney about placement
Dr. Caliendo said he’d mail me a brochure 4
[my sister] said mom received $1100/mo from Social Security
Dr. Caliendo said I need to search for group homes, and that he’d send a pamphlet
Rodney returns on 27th
Dr. Caliendo said dementia is a horrible disease
We scheduled a call w/Sophia
— end 5
called [my sister]; we were talking about how much this sucks, when Sophia called again
I joined the calls so all three of us were talking
Sophia said she wants to fax info about homes to [my sister]
Sophia said the results of the CT scan showed “loss of brain matter”, and a “stroke”
Sophia started reading directly from mom’s chart
“preliminary report, no evidence of intracranial …”
“old lacunar infarct of left thalamus”
CT scan performed on 12/01
“periventricular white matter hypodensities suggestive of chronic small vessel ischemia; CFF spaces prominent, consistent with volume loss, hyperostosis frontalis interna identified”
“prominent arthresclerotic calcification” 6
Anna, the Team 2 nurse, said mom is always crying and very anxious
1 Sophia asked me to call my sister from my iPhone because they did not have the ability to make a conference call from their office.
2 Knowing my mom as well as I do, I would guess she was being sarcastic with them. But I can’t blame anyone there for not recognizing mom’s dry humor.
3 That’s what I kept trying to explain to people, too. Nobody ever seemed to care or think there was a difference.
4 Dr. Caliendo, of course, never mailed me jack shit. Sophia at one point mailed me a 50+ page batch of photocopied lists of assisted living facilities in Florida which was completely useless.
5 The conference call ended at this point.
6 It is very important to note that multiple doctors analyzed multiple MRI results and CT scans in the months to follow and I was repeatedly told that my mother’s brain was physically fine and they could find no evidence of any trauma or a stroke at all. And on multiple occasions while my mother was at Stewart-Marchman ACT, people there gave me horribly misleading information because they were looking at the wrong person’s chart. I have documented on this website at least three times when someone there told me something which scared the hell out of me and then later we learned that he or she was viewing someone else’s chart and not my mom’s. So there is a very good chance that all of these details were not from my mom’s chart.