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burnt2acrisp (@burnt2acrisp)

Caregiver Burnout Warning

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

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@becsbuddy, thanks for your concern. I did get hubby back for a while. In the form of an almost unrecognizable zombie. However after a good night sleep he improved slightly but exhibited several new behaviors I hadn't seen before. Cognition down about 60% compared to before. Mobility very poor. By day four I realized there was a problem with his medications. Symptoms listed in the 'Contact your doctor immediately if…' section of the info sheets supplied with meds. He had symptoms listed on three of the seven medications he came home with.
Upon discharge the hospital told me not to call them – follow up with V.A. Primary Care. On pain of death don't miss any meds.
Repeated 'call back' requests from both myself and the after hours telephone nurses at Regional produced no reply. No one at V.A. could locate the hospital records/meds list that at discharge the hospital told me had been faxed to V.A.
After a week I took him to the local E.R. and found that the rumors about E.R.'s across the land turning people away for anything short of car wrecks or Covid were true.
Called the after-hours nurses at Regional again who still had not advised me to bring him to Regional. They advised me to call ambulance and have paramedics evaluate him which I did. They couldn't really rouse him either – he would open eyes and mumble 'What'? then nod out again. He had been missing much of his meds and food and water because he remained too lethargic later and later each day. About mid afternoon he'd wake up but he was supposed to be getting pills all day from early to late.
Paramedics said his vital signs were good, he did respond briefly when shaken, they felt that he was way over medicated or else was failing to metabolize the meds leading to build-up in system. Reduce the haliperidol quite a bit, rest may be ok. While they'd be happy to transport him wherever I said…they advised against it as E.R.'s had other things on the mind lately.
Later and later Hubby was 'waking up' and his mobility was much improved with the reduced meds. Cognition still negative ten. Violent aggression magnified tenfold.
A few days later dr. sent a message saying that he'd have his nurse call next day. She did but was as disinterested in troubles as ever. She's done this type of thing before. Said she'd look around for the missing records and then talk to dr. about it if she got a chance. (I think the records came to her originally and she didn't upload to the system after a week and a half)
I called the call line nurses at Regional and pitched a f#$#king fit. They said if I didn't hear from dr. by 3:00 call them back.
He did call later only to say that nothing could be done. He still didn't have the missing records/meds list. E.R.s across the land were turning visits away…. cut the haliperidol and hope for the best. ALREADY DID!!!!
Day was pretty advanced by now and Hubby was up and doing. Difficult to speak to dr. cause Hubby hammering on the bathroom door and screaming at me to come out of there. He'd already tried to brain me with a metal pipe he'd found. Mobility much improved! I deflected the blow but it hit my knee and now on day 5 I can walk pretty good again.
Couple of hours later dr. called again. He'd spoken with a psychiatrist buddy about it (and I suspect Nurse had 'found' the missing records) and concluded that I should take Hubby to nearest E.R. right away. Been There Done That – any other bright ideas? He said he'd call and pave the way. He did so.
Finally got on the road and dr. called again and said to get ambulance if needed.
After a series of misadventures in the E.R. Hubby was packed off to another dementia unit. They wanted to send him back to the first but I said PLEASE DON'T.
New dr. says haliperidol wasn't main problem. Other meds contraindicated for use with patients having Lewy Bodies were responsible. The symptoms/behaviors Hubby exhibiting prove to dr.'s satisfaction that Hubby does have Lewy Bodies. They tell me that he is very sick but showing some improvement.

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Replies to "@becsbuddy, thanks for your concern. I did get hubby back for a while. In the form..."

@burnet2acrisp. How is your husband now. Has he improved since the medicine was stopped? And how are you doing?