Making a Difference

In 2008, my husband suspected memory loss. I took care of him until a doctor insisted he take risperidone. Two days later he collapsed and went to hospital. That was his last day home. One psychiatrist noticed that with no neuroleptic/psychotropic drugs, he was very cheerful, making rounds on other patients. (My husband is a physician). He suggested we do not allow any drugs for him, but we were sent to an assisted living residence where the doctor in charge gave 4 drugs at a time, making my husband very sick. When I objected, they banned me from the home for 2 weeks and even then did not want me there. They did not want him there either because the unit had 6 ladies who watched television with the aides. He is diabetic also and the manager of the unit told me he did not belong there.

In the middle of one night, they discharged him to local hospital and then called to tell me. I asked who was going with him and they said they were just dropping him at the emergency room. I drove there in a blizzard to find him and there we sat all night. He was admitted and stayed for 5 weeks until they could find another home. The Veterans’ Home took him and we were delighted. There the psychiatrist comes once a week, prescribes and nurse can give those drugs when she feels it’s necessary. After quetiepine and lorazepam, he became wild. They sent him to psych hospital where he was drugged and put in wheelchair. They returned him after 3 weeks to the Veterans’ Home in a wheelchair, weighing 13 pounds less because he was too unconscious to eat. The drugging continued. Soon I went to visit and he had been sent back to psych hospital. More drugs.

My daughter contacted many hospitals for advice. Johns Hopkins hospital wrote to her that if we could get him there, they might be able to help him. So we did. They confirmed that he may have LBD and certainly he cannot be drugged. No nursing home in Suffolk County, NY would take him on those conditions, so now he is healthy and well cared for in nursing home in Rockville, MD where Johns Hopkins sent us.

I am telling my story to hopefully make a difference in someone else’s treatment.