My mother became ill pretty much all of a sudden. She was admitted to the hospital and was told she drank too much water and was delirious. Over the course of a year she started becoming afraid to drive, acting oddly, weeping quietly or expressing gripping fear, oscillating between aggression and extreme apathy. She started saying everything we said back to us in confusion and tearing up her clothes unable to understand sometimes how they worked. Before all this she was usually described as upbeat, gregarious, congenial, healthy and intelligent. She was many peoples go to for Arthurian legends, history, philosophy or a good friend to spend time with over tea. For me she was all that and mom.
In the beginning the family urged her too to see a psychologist and a psychiatrist. All her physical and blood/urine test came back to us suggesting someone who was in notably excellent health. It was obvious to anyone who visited, this was not the whole story, something was very wrong with her brain. We even had to eventually insist on on some sort of brain scan as if this was asking too much. It was finally done "but showed nothing" Both the psychologist and the psychiatrist were totally unhelpful and just wanted to prescribe her anti psychotics and anti depressives. Neither would admit her to counseling as she herself requested and she herself asked not to be on the drugs. She was mostly lucid at this point. Later while her sister was staying with her she convinced her to take the drugs, well meaning, but this was when she was rapidly declining and perhaps had little or no ability to refuse. When I came in as caregiver I noticed them making her worse. I also remembered her personal wish to no be on them. Both convinced me to request she be taken off. I requested therapy instead. I was met with incredible resistance and illogical justifications. One reason given. "Because we said so". Me, "really, how is this sound without a diagnosis? I am there with her all day, everyday. What if these are not helping and if anything making things worse?" Still hostility I was there, I saw how she responded. As she got worse she had trouble speaking, said weird things, seemed afraid of things that were not there and cried nearly all the time. Her inability to communicate, her strange responses and eventually her total refusal to eat food or drink water where becoming a serious concern. While her memory seemed perfect her understanding of simple things seemed on a rapid decline. Once in a while, very rarely she seemed briefly dreamy and happy, but this was often followed by no response at all. She also started to sleep less and less.
The care-giving was needless to say, heartbreaking and demanding and the need to be our own detectives at such a harrowing time: convoluted, distracting and time consuming. No matter how many visits to the doctors, nothing conclusive or definite to say as if the diagnosis of "dementia" should be enough. Yet the definition "dementia" isn't a specific disease. "Instead, dementia describes a group of symptoms affecting memory, thinking and social abilities severe enough to interfere with daily functioning." If "diagnosis" is "the determination of the nature of a case of a disease or the distinguishing of one disease from another" clearly this was not a diagnosis but a description of what was obvious to anyone, which was to say something was wrong with her cognitive function. So their excuse for a diagnosis was a group of symptoms instead of a disease and they were extremely rude and unprofessional to my request and clearly against going any farther. From a medical website "Other conditions that may cause dementia: Reactions to medications, endocrine and metabolic problems, nutritional deficiencies, infections, subdural hematomas, poisoning, brain tumors, anoxia (lack of oxygen), heart and lung problems." So basically they have let us know its not just that we don't know, we don't care. So they are not even interested in the underlying cause and worse the so called diagnosis is pointless and vague.
For the caregiver a diagnosis of "dementia" is the equivalent of a diagnosis of "broken" or "trauma" without letting you know where its broken and to make things totally interesting having the injury be invisible. Clearly you could easily wind up causing more harm than good through ignorance.
Which is what happened.
Kaisers version of "mental care" or a "therapy option" was to "take her to the emergency room and hope she gets admitted to the "psych ward" This is literally what they told me to do. So after some questions from the nurse; 18 hours of going between my mother screaming as if in pain and crying pitifully wanting to leave in the waiting room until she was admitted. Being admitted seemed to make things only worse and there was her in terror and my husband and me going between the one chair and the floor as they could not even provide an extra chair as we held her hand and said loving calming things to her all the whole time until she was taken 8 hours into this. It was a nightmare.
She was admitted to the psych ward and what was not told to me in the whole "try to get her admitted to the psych ward" game was I would be totally unable, even as her Medical Power of Attorney, to have her released until they said so. Even though at the mental hospital within a few days she was much worse, not better, and nearly catatonic, 90% unable to speak, and scared I could not have her leave. I will never forget leaving her there on my one hour visit as she pitifully begged me not to leave and I was forced to leave. Inhuman. She was subjected to more anti psychotics and the like, and at least finally some therapy . When tested up till then and in the emergency room she remembered everything perfectly and scored high on other such test. She really did seem to "snap out of it" a little for strangers rather often which suggested a wide range of mental conditions as did her inability to speak, her near constant depression and weeping, the random deafness, and her inappropriate and confusing behavior. The mental hospital suggested psychotic depression. Like her previous test she seemed to them apathetic or distracted but was not having any clear memory problems. The overwhelming amount of sadness and her inability to string sentences together had gotten worse. But when pressed for a diagnosis more specific and helpful than dementia they said they were stumped and she should see a specialist but she defiantly had severe depression and her symptoms were far more than any psychotic or catatonic depression alone could create and certainly not Alzheimer's with the good memory. Yet no diagnosis still. So they gave her back "dementia" with "severe depression", and they like the Unprofessional's kept interspersing dementia with Alzheimer's regardless of the facts that they are not the same and they sent her to a "recovery center". So she was finally after two weeks in a mental hospital needlessly, released.
This recovery center was a real zoo, but at least later they had an excellent neurologist brought in, something I had requesting for over a year. I also asked for her info to at least be looked at by anyone but the mental health services of Kaiser or at best specialist in San Fransisco and Stanford. All denied. The manager of this recovery center found my mom practically difficult to deal with ( as her caregiver I had some small compassion for him ) her symptoms were near unmanageable and now she never slept and worst from his standpoint, she had bad reactions to the drugs and unlike at the psych ward the recovery center could not justify keeping her catatonic through drugs. They were a recovery center after all. To his credit he was also frustrated as well with the lack of diagnosis which both that and her inability to improve combined would keep her there longer than he would like. She totally stopped eating again too. They put her on a tube fed. Now she is very out of it and seeing a person that is not there, intermixed with quiet mumbling and crying. Her speech slurred like a person on heavy drugs. So finally the really notoriously good neurologist was sent in. And you know what? All of a sudden a diagnosis. A CET scan taken a year before (at my insistence after many refusals)was finally analyzed by the neurologist and revealed a specific kind of auto trophy. These are the same old scans that they said had "nothing out of the ordinary". They called a meeting with my family. They gave us the suspected diagnosis: Frontotemporal Dementia (with semantic dementia) and by the way, she has about a few weeks to a month to live.
A little summery of Frontal Temporal Dementia:
"Common signs and symptoms include significant changes in social and personal behavior, Pseudobulbar symptoms (pathological laughter and crying) and deficits in both expressive and receptive language. May show mood and behavior changes including stubbornness, emotional coldness or distance, apathy and selfishness. Unlike Alzheimer's disease, which affects a different area of the brain, many people with Behavioral Variant FTD don't show any confusion or forgetfulness about where they are or what day it is, at least at first. A decline in self-care and a reduction in the ability to perform activities of daily living is another early feature. As the disease progresses, the person may become ‘obsessional’, repeating patterns of movement and behaviors like hand wringing or echoing back whatever is said."
There were all her symptoms. They fit like a glove. And guess what? To add insult to injury anti psychotics and anti depressants can antagonize or do nothing at all.In other words, were actually making her worse and possibly accelerating her symptoms. The palliative care for Frontal Temporal and Alzheimer's are very different. The pathology is very different. Now at least we can do what little for her comfort and happiness we were denied due to negligence of Kaiser. Except she is becoming catatonic. So for her last two weeks it is mostly too late. I have to decide whether to remove the feeding tube. I do. Thanks to no dignity in death laws she is forced to die slowly of dehydration and starvation in a world of nightmares with us no longer able to reach her. My mother. It could have been your mother. The one size fits all system of Kaiser is a merciless juggernaut that neglects mental health issues and refuses proper care and diagnosis. She suffered needlessly for their incompetence and apathy. We all did.
The summery of my experience is she should have been treated with compassion and basic medical competence from the start. If she had had therapy or a neurologist as asked this could have all been avoided. The needless horrors and suffering of that year on her loved ones should have never happened either. I write this for the first time with some difficulty (so please pardon its imperfections) in hopes that no one has to go through what my mom, my family or I had to go through again.