Hello my husband has cortico basal degeneration. He is in his 5/6 year and is confused does not know me, his son, our home. He wants to 'go home'. He wants to be with his mother who has been dead 26 years. He sometimes calls me his mother. Tonight he says he can 'see things' but cannot tell me what he can see. He says he is scared.
He has had all checks which are clear so no physical reason for these symptoms.
When I first called PSP association 2 years ago I was told he will always know who I am.
Has anyone else experienced this please
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Northstar1
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Hi, Strange but my Mom too always say she wants to go home when she is home. I think it could be the caretakers who throw her. She has a better time with long term memory over short but there are times she doesn't recognize me and says I look like someone...I'm sorry that he's feeling frightened. Maybe it's of what's to come? I swear there are such moments of lucidity in the haze.
Hi im really sorry your going through this. My mum was diagnosed with CBD 4 years ago with symptoms for a while before that. For the last year shes been in 24 hour care after me being her full time carer for 3 years. Shes been having hallucinations and conversations with people who have been dead for many years for over a year. Sometimes she'll recognise me n other times she'll say its not me as I have "evil eyes" or "a bloody face" she would ask me to take her home and get really angry when I leave. It can be really hard work and I've learnt that u just have to take things one day at a time. Some days my mum would have the funniest conversations with whoever she could c and i would take comfort that shes not scared. Other days she'll talk about scary things. I'm here if you ever want to talk x
NorthStar,Your post caught my eye because my wife(also with CBD) said those exact words “I want to go home”. I struggled to understand what she specifically wanted. When I asked, trying to clarify, I got nothing. It was also to the point where she struggled to speak and her volume was almost non-existent. I also thought she was asking to be with her parents that had passed. We finally drove out and saw her brothers which seemed to satisfy her slightly, but I think she was also so frustrated with the decline of her mental and physical capabilities that she was ready to be with her creator God who she knew personally. She passed away about 4 months after those times where she started to ask to go home.
My wife would also have moments where she would ask who I was, but it was momentary. Not a constant state of confusion. It is heart breaking.
From being on this site, I have seen different manifestations of these disease and typically memory loss and classical Alzheimer’s symptoms are not common like you were told. However it appears that their are varying amounts of Tau proteins(more typical in CBD and PSP) and Amyloid proteins(more typical in Alzheimer's) built up in the brain with these diseases. My wife had some experimental brain scans(and confirmed by autopsy) that showed build ups both proteins and in which portions of the brain, which is why I believe she had some slightly different symptoms than were traditional CBD like your husband.
I want to encourage you to cherish these moments with your husband albeit difficult ones. Too quickly even those difficult times will come to an end.
Prayers of strength, comfort and wisdom covering you,
Bobby thankyou so very much for your kind reply. It has given me a different perspective and understanding best wishes to you. Hope you are doing ok xx
I was just reading your previous posts the photo of your wife and daughter so lovely i commented on it then. God bless you and your family love to you xx
NorthStar, I remember your previous posts also. The thing that struck me was that your husband was young like my wife when diagnosed with CBD. My wife was 58, but had been having symptoms for 6-7 years prior to that and being treated for Early Onset Alzheimer’s until the correct diagnosis.
It has been over two years now since she has passed, but I still get the daily updates from this forum that I usually glance over them. Some times I see ones like yours that just strike a chord and bring back vivid memories of that period. My heart goes out to all of the people on this site who are in the middle of this cruel disease. I know that when I was in that period wonderful people on this site helped, encouraged, and enlighten me. It was somehow comforting to know that I was not alone.
My sister still knows who I am and is very aware of what is going on...sadly she is also aware of her decline..which breaks my heart...am trying to stay brave until Jan 6th when she decides to leave this world...and be at peace❤
Hi, Anne quite regularly says she wants to go home when she's here. Just lately it's sometimes she wants to go home to where she worked over 40 years ago.She used have quite bad times with her hallucinations, but the people she see now seem to be friendly. Sometimes they talk to each other and she says both sides of the conversations.I get called Grandad (I'm not one) Uncle George, Keith, Auntie Mable. They have changed over the years. Once was called Sugar Plum Fairy so that's who I say I am when she asks and then she says it's Grandad.
My husband also says he wants to go home--especially toward evening, he wants to know when we are leaving. He has even given me a street on which we are supposedly visiting. The first time it happened, I told him that this was his home as well, and he responded, "You bought a house behind my back? What other things have you done that you haven't told you about.?" I read that Alzheimer patients say that as well, and it means that they want to be reassured that they are in a safe place.
I just go along with it and tell him that we are leaving tomorrow........
Is it possible that some medication is causing this behavior in your husband? When my husband was on levadopa, he called me his mother, talked about how he showed up his brother, wanted to know when his mother will get home, and had hallucinations and body tremors. He was not able to feed himself, as both hands shook. Ask your doctor about it if he is on Ldopa.
My husband right now is taking no medication for his condition, except his antidepressant and stool stimulators. He is much more himself, is talking more, eats his food (cut into little pieces) himself. I am not sure but think that we are in our 5th year--he cannot walk and has been bed-bound for the last 5 months. He keeps forgetting that he cannot walk.
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