Has anyone had a loved one with mild dementia develop Charles Bonnet Syndrome with almost constant hallucinations?
My 83 yo father had a stroke 8 yesterday ago resulting in mild aphasia and mild vascular dementia. He also had hypnogogia over the past 5 plus years. Two months ago he had a stroke in his “good eye” with advancing (in complexity and frequency) hallucinations. Sort if diagnosed with charles Bonnet Syndrome. Neurologist prescribed meds & Dad didn’t want to take the Mirtazipine prescribed but yesterday was so bad he agreed to go to the ER for blood & urine tests (negative), ER doc said to see his neurologist. He agreed to take the medication last night and has now slept almost all day and is not very sensible when briefly awake. Due to computer hacking of local healthcare system I cannot communicate with any of his doctors and can only deliver a “brief” handwritten note to his office in person. Dad needs some relief/peace of mind but I don’t know that he/we can handle 2 weeks like this for the meds to stabilize in his system, and I’m not certain he should keep taking this medication. His hallucinations scare him/make him anxious (giving tasks, redirecting, rationalizing don’t work) if I agree/sympathize he’s upset; if I “show him” he’s safe, he says he knows he’s not and knows he’s right (again rationalizing is not helpful). He say’s I’m on “their side” which is new. It’s just me/ no real support system- and he was driving, relatively independent up to about 2 weeks ago. *note Neurologist says he doesn’t think he has Lewy Body Dementia but has not tested him. Has anyone else experienced something similar/have advice?
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You can go on doing it like you're already doing. You can spend all your waking hours assessing, analyzing, knocking yourself out because you think that's what you're supposed to do. Or you can be honest with yourself and admit that this is unsustainable. And then you can change course, put your considerable talents to work doing what needs to be done to get them into 24/7 care, and eventually congratulate yourself for not letting it go on this way until they're both dead and you're halfway there yourself.
I know it's tough! Very sorry, and good luck.
My mom had Parkinson’s disease. She lived to be 95. Her eyesight and hearing decreased quite a bit. I see that Charles Bonnet Syndrome mostly affects people who have poor vision.
My mother kept telling us that a young girl was visiting her. At first she said that the child was in her dreams. Then she said that she saw this child when she was wide awake.
I just went along with what my mother told me. This child seemed to be a comfort to my mother.
My mom did have dementia towards the later years of her life. She tried to walk out of the front door in the middle of the night. Her neurologist prescribed Seroquel and Ativan for her which helped calm her down.
She continued to tell me about the child who she claimed to be seeing. It was fascinating to hear my mother’s stories about her.
Your father needs a thorough assessment of his needs. After this, you can decide what care is best for his needs. Start researching facilities now, so you will know what resources are available in your area.
It’s so hard to see our parents declining. My father had a stroke while he was recovering in the hospital from major heart surgery. He was never the same man as he was before his stroke. My dad had his challenges but he didn’t hallucinate.
According to your profile, both of your parents are in need of care. You certainly have your hands full.
Best wishes to you and your family.
I do think at some point you are going to need medical transport to the hospital and your Dad is going to need to go into a neuro-psyc unit where he can get properly diagnosed. At this point ANYTHING could be going on from a UTI to serious brain problems that require medication. Best place to do trial and error on the med cocktails is in a facility and after all the scans to contribute to a clear diagnosis. I would call EMS. Act dumb and elaborate that you are afraid and his syptoms could be a stroke and etc, so that EMS will take him to ER. Once there, do not take him back home without telling Social Workers that he isn't safe in in home care now and you have been given no ideas of what is happening to him and need a diagnosis. You are going to have to stand firm to get him admitted.
I am so sorry and I wish you so much luck in this. It sounds a mess with no answers now and you must be feeling quite frantic.