27forParkinsons: Day 4 Following on from yesterday where I briefly mentioned hallucinations: Visual Hallucinations - Well-formed, persistent and vivid visual hallucinations are a feature (personally I'd not call them a feature) of LBD, particularly dementia with Lewy Bodies. Hallucinations can be benign and non-threatening, but responses can range from indifference to concern and, in extreme cases, sheer terror. Often the hallucinations are of family members. They can also be of other people or animals including spiders and snakes. After the event, those having hallucinations are often able to rationally interpret and discuss their experience. Hallucinations may create fear in the person experiencing them or just be accepted. Additional stress such as an acute hospital admission may increase the frequency of the hallucinations. Looking back Bill's hallucinations really began after his major cancer operation in 2016,(which at the time our GP put down to the operation which took twelve hours), when he started to see people in the bedroom at night, over the years these became a regular, almost a nightly occurrence and eventually during the day. Many a night I had to herd cattle or sheep from the en-suite, send Tony back to Heyfield to use his own toilet, chase the cat away (we haven't had a cat for 35 years), be careful not to squash the baby, make sure the kids caught the bus, one night he was trying to put his shoes and socks on not once but three times, after the third time in less than an hour, my patience wore thin and I threw his shoes and socks out into the lounge room, to which he responded 'its your fault if I miss the bloody bus' sometimes during these hallucinations his demeanour changed, my quiet gentle giant became agitated and annoyed, never aggressive though, another time he 'woke' "where am I - I'm lost" "Suzanne will be waiting for me, will Valerie find me", I've searched for phones, china, keys, I've had to pretend to ring his brother Mike, one reoccuring hallucination was we had no money and no where to live - this one was so realistic he honestly believed it and told family and friends - I ended up making 'signs' and placing them on the bathroom mirror and kitchen tiles saying 'this is our home' 'we do not have money worries' these seemed to alleviate that fear and hallucination, another time he opened and shut the ensuite door four times before entering the bathroom, not long after I coaxed him back to bed, he called out "door open' and again got out of bed calling out 'where are you Mickalo' (Mickalo was a nickname of his Dad), one morning I found the bathmat on his bedside table along with his clothes, there was milk boiling over in the ensuite, many times he'd wake wanting to know where we were as this was not our house, there were just so many incidents which I've noted in my journal - mainly in point form to jog my memory. My friend Kath can attest to a daytime hallucination when 5 bob flew out of his hand - experts tell you to go along with the hallucination and gently guide them out of it, never dismiss it, so there we were Kath and I hunting for a coin which didn't exist. One of the afternoon episodes still makes me smile ... "why has YOUR Granddaughter got her head through the airconditioner grill" 'its OK she's moved it now' was my reply' I couldn't help smiling as Lilly would have needed a super super long neck as she is in England. Bills hallucinations became exaggerated when he spent time in hospital, he rang Lindie (by this stage Bill was finding it difficult to use his phone) very distraught telling her I was in the bed next to him in hospital with a broken back and sunburn' There was a lady who had been admitted during the night and placed in the empty bed next to Bill, can you imagine how scared this poor woman was firstly being put into a ward with three older males and then one of them believing she was his wife! Later in the afternoon he left me a message 'I just saw them wheel you past my bed, where are you, how do I contact you? - the lady had been moved to surgical ward. That evening he managed to locate a fire extinguisher and set it off, extremely proud he had read the instructions - why did he do this? because he truly believed that he Lindie and I had been detained, held against our will in hospital and the only way he could see to escape was to call the fire brigade' - this was one hallucination which he was able to describe in full detail. The next evening when I went to visit, the nurse on duty told me he was packed and ready to go to Melbourne - we had previously, prior to the fall that landed him in hospital and another Covid lockdown, planned a family weekend in Melbourne to make family memories with the Queenslanders - when I tried to persuade him we weren't able to go then was the first time I ever saw anger in his eyes as he accused me of keeping him from his family, being selfish and that everything was always about me, I knew that wasn't how he truly felt, that it was his illness but boy it still stung me! A few minutes later he grabbed my hand and said 'that wasn't nice was it - you know I didn't mean that' Next trip to hospital we insisted he was in a closed ward where he couldn't move around freely at night and that the staff would be alerted if he did - foiled again!! He escaped from Hospital, he was found on the street at the back of the hospital (at this stage he was unable to walk without his walker and was short of breath due to fluid around his lungs but somehow he managed to walk unaided and find his way out) he did mention he saw the Sri Lankans on his way past and they wanted him to jump onto the big sheet they were holding, oh and he wasnt looking for me, I'd driven past him three times so he was off to visit Elaine - was all a hallucination).. there are just so many stories to tell however the most distressing of all was during his time at Burditt Manor where he thought the bruising on the back of his hand was dirt and he scrubbed it so hard he broke the skin (he had paper-thin skin) and required 8 stitches. Sometimes Bill could recall every minute detail and other times nothing at all, he got to a stage where he told family and friends he just didn't know what was real and what wasn't any more ... one thing I know is that our love for each other never stopped. Yesterday I didn't find time to make a connection/communication myself .. family and friends beat me to it .... had a visit from Tony, Julie and Maddi, spoilt once more - another beautiful birthday cake made by Julie. Then a long chat, where I sat outside enjoying the sunshine, with Rachel and Kristen - so happy for Kris she has just landed her first job, with a Film Company that makes and edits films for schools ... Today I turn 75 - first milestone without my love .... https://www.27forparkinsons.org.au/fundraisers/valsellings