Here is a little sampling of one week in my life with double Dementia.
I get a phone message on my home answering machine from my father’s girlfriend a couple of weeks ago. She is in her 90’s, as well. She says, “Your father is in the hospital and you have to come here right away”. They are in New York. I am in LA. I start making phone calls. His doctor doesn’t know anything about it. The hospital doesn’t have anyone by that name in the ER. My father isn’t picking up his cell phone, which isn’t unusual because it rings in a frequency that he can’t hear. Eventually, I reach the girlfriend and discover that she has taken him to her doctor who, in turn, has decided to check him into her hospital. Why? Because his doctor isn’t good enough for him, and hers is better. I finally reach this doctor, who tells me that my dad was experiencing nausea and was quite pale and, considering his age and not knowing anything about his medical history, she decided the best thing was to send him to the ER. She is not pleased when I inform her that, indeed, he has his own doctor with a full set of medical records. What he and the girlfriend didn’t remember – and the new doctor didn’t know – is that he had just been put on Arasept, a drug that can slow memory loss but can also cause stomach upset. Case solved, hospitalization unnecessary. However, since he can’t pass the cognitive tests the hospital social workers give him, they won’t release him from the hospital on his own recognizance. I arrange with an agency to have an aide meet him at the hospital and stay with him until he feels comfortable being on his own. I see dollars signs piling up, but there is nothing to be done.
He has been successfully convinced that his doctor is no good and now wants this new doctor to treat him. I explain that if that is what he wants we have to transfer his records and inform everyone who treats him. He asks if I can take care of it. And can I find out if he has had a flu shot, because he doesn’t remember.
My mother, who hasn’t been married to him for 45 years, has started to regularly ask how he is doing. She thinks he should be in a home. I tell her he doesn’t want to be in one. She says that people sometimes have to do what they don’t want. The pot says she will get the kettle a brochure from the place she is staying. She lives at home. She calls me back and lets me know that she inquired and it turns out it isn’t the right kind of place for him.
The aides are trying to keep my father’s medications organized in a weekly pill organizer. When the aide shows up in the morning, however, he has sometimes taken two days’ worth. He has also pulled out the bottles from the cabinet where they have been stored to prevent confusion, and sometimes takes the meds right from the bottles. The aides do not seem to be able to control this behavior, partly because we have not had one consistent person whom he grows to trust.
My mother will not go to see the eye doctor because she wants to wait until she is back in her apartment to see someone in her neighborhood. She has never left her apartment.
My father calls me in a panic because he doesn’t know how he will write his rent check, his will is all wrong, and he has a letter he doesn’t understand from his insurance company. I assure him that someone is coming next week to help with the bills, his will is fine, and I am handling the insurance.
My mother believes someone has stolen her winter coats. I tell her to get in the wheelchair and go look in the closet, where she will see the coats. She has to wait until the next day because the aide can’t transfer her alone. She frets about the theft.
My father never locks the door to his apartment and calls to tell me that someone has stolen all of his winter coats. They went into the closet in the spare bedroom, took the coats and left the hangars on his bed. Apparently, there is an evil coat fairy about. I have no way to verify this story and it is full of holes, but he has made a full police report and is now locking the apartment door. I send him a down jacket.