Situation: 94 yr. old always-verbally-abusive mother with one year diagnosis of Lewy Body Dementia. Lifetime history of undiagnosed/untreated emotional/personality disorder with angry outbursts and paranoia that affected every family member, but she "ruled the roost". I got out early, got counseling, was able to maintain a semi-okay relationship over the many years. She was a good grandmother to my children.
Started noticing memory problems, poor decision making and increasing paranoia as long as 12 years ago in looking back at things. (We were told this is how insidious Lewy Body Dementia can be!) Deficits became more noticeable and more pronounced after Father's death 10 years ago. Mother refused any and all suggestions, both from family members and her PCP, for medications that perhaps could have helped (Aricept). As only child in town (one sibling thousands of miles away) I provided all support/transportation for health care, family gatherings, etc. for both and then for her alone. Eventually my children both began to help me out with this at times.
Within weeks of Father's death delusions began. Did not know what I was dealing with at first. Tales of obscene telephone calls from an old neighbor. But would not allow notification of the phone company about this. Tale of receiving call "from a friend" that she should not mourn my father's death (which I had not seen any evidence of anyways) because he was having an affair. (Never would I believe this). A story that my father was a drug dealer, selling his pain pills out of the car while she was in the grocery store. That the people he was selling drugs to were calling the house asking for him. Bizarre stuff.
BUT, I am the only one she "shared" with, at least for several years. So, for a while, other family members thought she was "okay", despite me describing these things. They laughed and lovingly referred to her as "always kind of nuts".
Yes, I discussed it with her doctor. He suggested medication. She refused. He said "I can't force her to take medication". So there we were.
About two years ago, she started into delusions, which she began sharing with the others. Deeana is coming into my house and putting things into my closets. Deeana came in and tore up my will and left it laying on my bed. I woke up last night and Deeana was in my living room. And they just kind of laughed. At this point I insisted sibling talk to doctor. Doctor suggests meds, she refuses, etc.
Still taking her for lots and lots of medical and dental care. Verbal abuse and paranoia increasing. But ONLY directed at me. I now realize I have taken my father's place - she was just awful to him for as long as I can remember. I'm remaining calm for the most part. But am denying I have snuck in and stolen her hair dryer and left more things in her closets....
A year ago hallucinations began. Seeing dancers in costume on her front lawn. I call her doctor and make appt. for her in two days. Son goes over that night to sleep on her sofa and see if maybe she is dreaming this. She isn't dreaming. "She seems fine except she is seeing things that are not there" he says.
Doctor sends her from office to hospital for admission. Geriatric psychiatrist diagnoses LBD within 2 days. She is pissed off, denies any problem and tells anyone who will listen that Deeana is just making up lies about her and wants her money. Also states I have stolen money from her. (I have not) Placed on medication and (unknown to me) released TO HOME! Son took her home, "made her comfortable" and left. Of course she fell that night. Broke hip, hospital, rehab, and then assisted living ever since. She recovered from hip, got better enough on meds to be fairly okay. No hallucinations, paranoia still present but decreased and not as aggravated. I was visiting regularly.
Then noticed increasing aggravation, verbal abusiveness with me and workers. Requested psych consult thinking med review was in order. Then learned she had been refusing psych meds for over a week. I visited, pleaded with her to take meds. "No, YOU just want to control me. You want my money! You've stolen from me and you will do it again! Get out of here! I don't want anything to do with you! You've always been nothing but a troublemaker! Get out, get out of here!
I did leave, of course. And when I called to talk to the Social Worker I was told that mother had removed my name from them being able to discuss her condition, her meds, or anything else about her.
That was 6 months ago. I have not gone back. And I don't intend to - unless I was assured she is medicated. Out of a wish to preserve my own mental health. Something inside me just clicked that day. And my gut told me to not subject myself to this any more, ever.
So folks, even when it's dementia, there does come a limit to human endurance.
I wonder if anyone else has experienced anything like this?