Hi Polomint, Hope you dont me asking. Has your wife still got hallucinations. Did they stop when they stopped the dopamine?
Hello , sorry for late replyâŚ. Hallucinations.. she said they have stoppedâŚ. But boy bad days .. but the doctor has said she is delusional. As one day she as good as gold ⌠the next woow. Bad ⌠having arguments with coats ⌠believing in things that are not real⌠boy itâs hard. So to your question.. did it stop.. when she came off the dopamine patch yes .. BUT she couldnât walk , talk and slept all day .. so itâs tricky to get the right balance..
someone said itâs âsundowning â which I donât believe .. as it happens , my wife could be fine all morning has nap wakes up ⌠a different person.. jeckle and hide .. is it the dopamine.. is it progress, donât know.. itâs just driving me mad .. never knowing how she is one day to the nextâŚ. One hour to the nextâŚ. What fun
Hello Polomint I have only just noticed your reply. I have also driven myself crazy trying to figure out if itâs the tablets or Parkinsons. I have now discided to just go with it but itâs difficult. I canât plan anything and itâs becoming a lonely life. The delusions differs from one day to the next.
Oh Rach1 I feel your pain. My hwp ended up in an assessment unit for 4 months. Having experienced very bad delusional symptoms. End result is a diagnosis of mild Parkinsons Dementia. However, now he is home, I would never describe it as mild. The disease / the medication question is permanently on my mind, but like you, Iâm just going with whatâs in front of me..and itâs not pretty. Neither is it from my husbands perspective. I too feel alone with this. Have been given a sheath full of photo copies of Info related to PD dementia. My head was spinning with it all. At the end of the day, itâs how much itâs affecting the person with PD, and the impact on their closest relative. Our change came with such speed, driving in Feb, now virtually housebound. You canât plan for this, no one expects it and who would want to contemplate it ? Every day is a challenge. I never know what each night will bring, and itâs just as wellâŚ.. I still say..live each day as best you can, no one knows whatâs round the corner
Gosh Jandc, thank you for sharing your experience. I have over time learned to cope with it and give negative answers and he moves on. My problem is my husband has never been a great mixer and unfortunately heâs now worse. The family keep saying drop him with us for a few hours which I am going to stop being so independent and take them up on there offer. Could you do the same to give you a break.
Hello , @jandc so like lot of people here were all looking for answers.. is it medication, progress know one seems to know . So me and my wife have just today had a meeting with the doctor,( we saw one 2 weeks ago and said she was delusional. ) My wife at that time was happy and alert, today she was well out of it with movement and speech , so today he said itâs dementia onset or mild. And to make sure the tablets are on time ( I have explained dementia in a different item on forum that has now been down rated as MCI ) .. I donât believe itâs progress. I was also told to back off and walk away when my wife is having a episode.. how can you do this when your love one is trying to go out into the street at 02.00 am.. just as they think thereâs someone out there waiting for them âŚ. Dont we have a duty of care to help and not escalate the situation were our loved one could come to harm .
But again itâs the closest person to get the full brunt of it .. trying to explain what happens to the doctor, and all that they say is .. itâs complicated . Itâs progress .. Im thinking of getting a body cam just to show people what I go through .. as many of you know first hand daily basis. Itâs not easy for us the families I now feel more like a carer then a husband
I also think there must be more , why do the doctors hide everything behind the Parkinsonâs banner as every time we go itâs âŚ. The Parkinsonâs
1 Like
Hello @Rach1 yes I believed when i got married. .. in sickness and In health .. the sickness would never happen âŚ. Never planned for it .
But it becomes apparent that no matter what you try and do your best .. but every time you think you have got somewhere ⌠it kicks you up the bum .. as you say âŚ. Itâs getting lonely bit by bit day buy day trickle.. nothing we can do nothing will take your love awayâŚ
But Parkinsonâs.. is so cruelâŚ.
I came across a wishing wall in the Sandinrinham estate Norfolk . This week
My wish. Cure Parkinsonâs
1 Like