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Caregiver Burnout Warning

Caregivers: Dementia | Last Active: Nov 2, 2020 | Replies (42)

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@burnt2acrisp

@becsbuddy, I guess I'm mostly not too bad. After a ridiculous struggle I was able to obtain just enough hospital records to wreck my peace of mind. What happened to my husband was so much worse than anything I imagined. I think this website is mostly intended to comfort the users rather than to instill terror of hospitals. But I also believe that dementia patients are at a greatly amplified risk of mistreatment....
Long story short - in the initial intake interview with me the doctor only agreed with my presumption of Lewy Body dementia to get me out of his ear. He missed Hubby's odd behavior as being adverse reaction to continuation of deadly psych drugs. They burned him with haldol shots three times in a little over 24 hours on top of other drugs. He spent at least 3 or more days and nights bedridden screaming in pain about his legs being on fire. His belly bloated enough to impede breathing - heart rate, blood pressure and temperature soared, don't know how long this went on. Maybe 5 or 6 days. Finally a nurse called a code event...right side weakness, unresponsive.
A brain ct scan discounted a stroke but did find brain swelling that accounted for right-side weakness. Someone in E.R. paid attention to abdominal swelling, pain, ordered x-ray, found rectal thermometer out of reach up back passage. The gut had blown out, sepsis well underway.
Hospital appears to have opted for concealment, using Covid to account for the shortness of breath and fever. I was told I couldn't come and get him due to Covid. I still don't know if he had Covid at that point or not...discrepancies in dates/events in the scant heavily redacted records provided throw the issue in doubt. State Health Dept. already under investigation for misuse of Covid funds and the FBI has been tasked with ferreting out Covid fraud involving fake medical supplies. But not something like this. Since Hubby not on Medicaid investigation not their job either. State Health Dept. is in charge of hospital safety but prerequisite hurdles preclude that option.
I'm not interested in lawsuits. Had I been the one to delay seeking medical attention for symptoms I'd be in jail from now on.

A major point that only I seem to be considering: whoever lost the thermometer surely realized that it had gone missing...and said nothing. As Hubby suffered and sickened this person said nothing. What if a demented sadistic serial killer is on staff..and still there? Dementia patients would present golden opportunity for such one. After all "they holler a lot."
A state agency has agreed to investigate the incident as a possible neglect case but the assigned investigator can't conceal his resentment at being tasked with what he considers someone else's job. Just whose job it would be is an open question...I don't look for much from this bunch.

For What it's Worth Department: I commissioned an autopsy at my own expense to settle the Lewy Body Dementia question for keeps. I asked for 'head only' examination. Had I known about the thermometer would have got full autopsy. I was right about the Lewy Body Dementia but so what? Now that Hubby is dead doctors aren't interested.

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Replies to "@becsbuddy, I guess I'm mostly not too bad. After a ridiculous struggle I was able to..."

Oh @burnt2acrisp I am so sorry. You did your very best but it seems the world was against you. Now, you have earned a good rest. Just remember the good times. Find some of your favorite photos and set them up in prominent places. Fix a good meal and toast what was. I’m sending you a cyber hug so your not alone. Becky