4/4, alzheimer's and 24 hr hallucinations

[wspceo1]

Hi Guys,

My 68 yr old wife has been experiencing some mental decline for a few years and I started the process to look for evaluations. Six months ago, my wife commenced with hallucinations (visual, auditory and smell) and I assumed the hallucinations and memory loss were connected. During her life she was also dealing with many autoimmune problems and has been on Synthroid for over 30 years.

During the covid lockdowns in New York City where we reside getting any mental health or any health-related help is horrendous and expensive. Our first foray with Mental health doctors was, why come to see us about hallucinations? After a while mental health cognitive decline was found and memory testing is planned for the future. Our GP suggested Psychiatric help may be in order and after months of search finally found psychiatric help with a Psychiatric Doctor. My wife was put on an anti-psychotic drug to help alleviate the hallucinations in the short term and brought the Re-con protocol to my attention for the long term. I discovered my wife is 4/4 and we also started the recon diet guidelines as well as starting to address the other risk factors and protocols. Inflammation and autoimmune diseases were lifetime problems for her and now we know why. Her endocrinologist tells us her TSH is fine BUT we asked him to check for antibodies. Days ago, we found out she is antibody positive with Graves and we are seeing a neurologist in 2 weeks and will seek a full regimen of testing to confirm antibodies and have a volumetric MRI to determine if encephalitis is present and causing mental decline as well as hallucinations. Reading tells me that Lewys Body is the main culprit within Alzheimer's that causes hallucinations. So, her hypo-thyroidism, 4/4, lifetime auto-immune and inflammation problems and cognitive decline are all linked, could her hallucinations be linked also? Maybe so but my brain hurts thinking about it. I can see ways to help with the cognitive decline now but yet to find a way to remove the hallucinations. I don't want my wife to be drugged up the rest of her life. When I find some answers, I'll be glad to share and if anyone can help with the connection between Alzheimer's and hallucinations, I'd be appreciative. Regards, Bill

[NF52]

Hi Guys,

My 68 yr old wife has been experiencing some mental decline for a few years and I started the process to look for evaluations. Six months ago, my wife commenced with hallucinations (visual, auditory and smell) and I assumed the hallucinations and memory loss were connected. During her life she was also dealing with many autoimmune problems and has been on Synthroid for over 30 years. ...
Days ago, we found out she is antibody positive with Graves and we are seeing a neurologist in 2 weeks and will seek a full regimen of testing to confirm antibodies and have a volumetric MRI to determine if encephalitis is present and causing mental decline as well as hallucinations. Reading tells me that Lewys Body is the main culprit within Alzheimer's that causes hallucinations. So, her hypo-thyroidism, 4/4, lifetime auto-immune and inflammation problems and cognitive decline are all linked, could her hallucinations be linked also? Maybe so but my brain hurts thinking about it. I can see ways to help with the cognitive decline now but yet to find a way to remove the hallucinations. I don't want my wife to be drugged up the rest of her life. When I find some answers, I'll be glad to share and if anyone can help with the connection between Alzheimer's and hallucinations, I'd be appreciative. Regards, Bill

Welcome, Bill from someone who is also ApoE4/4 and just a bit older than your wife.

Let me first recognize the immense support you have provided to your wife during COVID and the added burden of finding a care team to help evaluate, diagnose, treat, and support your wife and you now and in the future. As someone who knows my husband may also be facing those challenges in the future, please know that this is not the future either of us would want for our husbands and the willingness to find a path through this uncharted territory is an immense gift of love.

Since you've read a lot, I don't want to presume to offer much more, but did find this article that suggests the isolation of COVID and the loss of familiar routines and people increased hallucinations in some people with Alzheimer's: Hallucinations and Covid-19: Increased Occurrence of Hallucinations in Patients with Alzheimer’s Disease During Lockdown The article resonates with me, because I knew a husband whose wife had been diagnosed with mild Alzheimer's and he reported that she struggled emotionally and functionally with the loss of a social group with other women with mild AD once COVID hit. In early 2021, her diagnosis was changed to Lewy Body dementia and her social group began to plan to return to in-person meetings--both events he welcomed.

You may be able to help the treatment team by keeping a diary of the time of day, duration, and type of hallucinations your wife experiences as well as any preceding events and her stated or apparent distress during or after. I worked with kids with significant emotional disabilities for years and we learned that they often had "environmental events" --fatigue, co-existing illness, a parent's distress, long travel on a bus, even constipation-- that increased the risk of a behavior, as well as immediate "triggers" such as an abrupt change in routine or plans, a change in staffing, expectations for work above their level of success. We followed a "try anything that works" approach including music therapy, movement, reduced sensory input (headphones for some), reducing transitions for some, building on small victories. And most of all, we looked at every day as a clean slate.

As someone who has had multiple brain MRIs as a participant in clinical studies of prevention, I compare them to hearing a jackhammer in a subway station. I have read of someone who was allowed to hold her husband's hand while he had an MRI to diagnose AD, and that may be a wonderful accommodation if your MRI center would allow it.

Thank you for your generous offer to share what you learn. We are a community of lifelong learners who know that our experiences help ourselves and each other.

[wspceo1]

Thanks for the reply. You are right that covid isolation has led to more hallucinations and cognitive decline. Growing up she came from an active and large family structure and all her relatives and friendships have either passed on or moved away. I have passed on this info to the doctors we see. Also, she experiences 24 hr hallucinatory triggers, many of which I have removed from the household. We also take care of a 6yr old grandson after school every day which brings her clarity. We are in this fight for the long term. Having lost 1 eye due to a rare inflammatory condition, nothing happens quick.