Wondering is any of your LOs have had the same as Colin is going through at the moment. He seems very confused all the time now, talks about some really weird things, like telling me I should be going to school, and that he put sugar in the petrol tank, I used to be able to listen to him, look at the telly, and then realise he has associated what was happening on the telly with himself, so say if there was a police chase, then he would tell me the police were after him, but now all seems very random. He is also seeing things like rugs on the floor that aren’t there, pictures and things on the walls that aren’t there, all very hard to deal with on a daily basis.
If anyone has experience. Did you manage to get any sort of medication from the doctor to help.
There is no Infection , temperature or change of medication that could cause this.
Thanks. Love and hugs to all Helenxxx
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Helen119
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Hi Helen, My husband isn’t having hallucinations but he’s confused the majority of the time. He has responded well to the Rivastigmine:
From Dr. Google:
Rivastigmine transdermal patches are used to treat dementia. Rivastigmine is in a class of medications called cholinesterase inhibitors. It improves mental function (such as memory and thinking) by increasing the amount of a certain natural substance in the brain.
Unfortunately it doesn’t work for everyone but it might be worth a try?
At one stage my Mary was convinced that her Dad was living with us and kept asking after him. He died years ago. I found it best to go along with this rather than confront it. It was a symptom she had of this disease.
Colin’s symptoms are pretty much identical to those that Rod suffered. Hallucinations were in daily evidence for him throughout his illness but because they didn’t distress him his neurologist felt it was better not to medicate as that in itself could cause other problems. I used to go with the flow and as long as I didn’t contradict him, even to me leading an elephant out of the room, we would get through it.
More challenging was the delusional stuff and like Colin, Rod would confuse TV with the reality of our own life. Any news bulletins showing something from a war torn country would have him yelling at me that our daughter was in danger and I needed to call the police before it was too late. He’d bang on the windows trying to get the attention of anyone passing. In the main I could get him through those sessions, often calling my daughter so that she could reassure him that she was ok and usually just talking to him calmly until he calmed down. If I’m honest, as hard as those times were for me, they were a heck of a lot harder for Rod as I could see the fear in his face. The neurologist did try low dose Quetiapine on Rod towards the end when things got very tough but to no avail.
Talk things through with Colin’s medical team to see if there is something that might help as what doesn’t work for one person can be of significant help for another.
I know exactly what you are experiencing and I really hope that Colin and you get some help in managing it.
Hi Hils. OMG exactly the same, so reassuring we are not the only ones, thank you for replying, I am speaking to the hospice specialist nurse today who will speak to the consultan, so if there is something they could try they will. Thank you again love and hugs xxxx
Hi, my Mum does exactly the same. She is in a nursing home but if she hears the news / TV news she confuses it with herself. She also talks about looking after someone’s babies, and losing them. She can become quite distressed. She has been tested for a UTI but is clear. Sadly I think it is part of the disease progression. Other times she is totally lucid and makes complete sense.
Saw similar with my Mum but it tended to be passing. She would ask her carer to take me to school, if I bought her new underwear or she got her hair cut she would ask me to do the same for my brother who had died 15 years previous. If we went in the supermarket she wanted to buy something for "the children's tea"(my brother & I). She worried about her non-existent back door and wanted to go upstairs in her flat. It was strange because at the same time she was very much in the present & lucid as well. One day she wanted me and I said I'm here, she said no not you the other one, she looks like you but it's not you. All we could do was try & reassure her best we could & distract her with something else. She also saw things some of which were hallucinations (rats in the bathroom), others were her trying to make sense of what she could see - a cat turned out to be a plant pot that was partially in the shade.
My mother experienced many of the same issues with confusion and a few hallucinations for several months until she passed in February. She was treated for several UTIs as well, but I think overall her issues were more related to PSP. Sometimes she would mix up things she saw on TV with reality and seemed to lose the ability to discern time/dates. We would acknowledge her and then change the subject or do something else to distract her. One particularly sad memory is her looking for her father's telephone number in her cell phone...he passed in 1974. She said "don't tell me he's dead" so I had to gently explain he would have been 102 if he was still with us and she seemed to understand. However she was never combative, belligerent or anything like that so even though it was disturbing to us, it never hindered our ability to care for at home throughout her illness. The physical devastation of PSP was hard enough, but to watch her mental abilities decline was another cruel dimension of this disease.
Hello, Helen. My husband was experiencing the same symptoms, seeing strangers in our living room, sometime even thinking we were in the wrong house and he wanted to go home. His doctor prescribed Seroquel for him, and so far it has reduced the hallucinations to nothing. Alas, he is still confused, and his speech poor, but such is the way of this miserable disease.
I have just read this thread and I cant believe the descriptions they match exactly the behaviour of my other half it is so comforting to read the experiences that others are having it makes me realise it is just part of the disease. the hallucinations and confusion are new to him and I have been struggling to deal with this aspect of his condition but reading your stories have been given me a little boost. thank you.
I get short off-the-wall both auditory and visual hallucinations on occasion. Mostly, I can tell what's real and what is not, so I'm not bothered by them. I know its the disease. I can well imagine it getting worse over time and more frightening. As of now it is not worth taking drugs for them.
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Aggression with confusion...
Catheter confusion, apologies in advance
Forgotten faces
Dad, Mum, Brother, Me and PSP.....
