kiwitt
Road to War Modder
Well a few people here know already what battles we are currently fighting, so I thought I'd share a bit about what has been happening with us and why I have not been posting too much.
Over the last few years my wife (of over 25 years) has been deteriorating and I was never sure why or what. I believe it started when we started to have problems in our relationship in early 2007. Since then my wife has been through some really terrible things, like losing her dad in late 2007 and her mum in early 2011 and her job later that year, because she could no longer communicate with other adults and she even lost her volunteering job because she would not follow instructions. Meanwhile she has seen me get on reasonably well with my part-time job and my volunteering at the CAB, which has kept me occupied and she feels even more removed from society.
So all and all, her friends, her family and me thought she was suffering some kind of depression, and when you consider what she has been through this is not a bad assumption. However, in the last few years I have been observing what I thought were 'autistic' like thinking, where she has an idea in her head and no matter how much rational discussion you had she would not change her mind.
Moreover, over the last 6 months the situation had got particularly bad in the behaviours she started to exhibit. These would include being at a family outing and she bust into tears and cry that she is all alone, even when we about to sing happy birthday for a 6 year-old niece . This continued for quite some time and it got to the stage her small nieces and nephews did not understand what was going on with her auntie. Next behaviours, is that she would tell her whole life history (mainly all the bad things she had done and none of the positive things) - 'her introduction' - to who she considered important people in her life, like my boss and my bosses boss, and so on, as she feels she needs to be honest. I thought this was very weird and contacted her doctor and had a private meeting with him and passed on all what I was observing, in the hope that when she next went in for check-up, the doctor could do some mental tests and so forth.
Meanwhile her brother had decided to remove her access to his children until she agreed to to go and get some help. We thought that this might be the trigger to get some action on the diagnosis as to what was going on. To no avail nothing changed and she seemed to still be getting worse. I had also retreated more and more into my 'man-cave' as any conversation attempts would inevitably lead to her 'trinity of problems' - She had lost her parents, she has no job and she is all alone, and I realised I could not help her any more.
The next step up of her behaviours was she would now do 'her introduction' to complete strangers. These included bank managers, tellers, supermarket managers, clerks and one day when she meet Len Brown. When she has a particularly bad day, she then also started to scream at me at the top of her voice and this was really upsetting for me. This screaming episodes got so bad I had to move out a couple of weeks ago. This upset her even more and this led to her getting so worked up an ambulance had to be called and she was taken into the emergency ward for acute assessment. It was here where we discovered that she actually had an anomaly in her brain, which looks like a stroke and some deterioration as well. She was sent home, but I remained away. A subsequent family vist they mentioned the fact the deterioration and the behaviours she was exhibiting seemed like to bvFTD (or Pick's disease). A disease that eats away the cognitive ability first and is a rare form of dementia that affects 1-2% of people and usually younger people aged like my wife. In my initial reading up on this I discovered that 'routines' were important for people with this condition, so I decided I should try to return home again. I did and for about a week it seemed it fine.
Then in this last week, the behaviours and the screaming restarted again and I then decided I had to get out of the house as I was for the first time feeling tightness in my chest brought on by stress. However I was still worried about her, so asked her friends to look into her that night and she screamed at them to go away (I had since learned that she had even screamed and swore at complete strangers in the park earlier that day). Later that night her friends waited at the top of the drive and think about what next to do including contacting the Mental Health crisis team after talking to me. She then started attacking the car, so at that point police were called and she was eventually taken to the police station and the 'official wheels' were kicked into motion. She is now in a secure Mental ward getting assessed, it looks like they may need to keep her in longer to make a more formal assessment as to what she is affected by and how long it has been affecting her and ultimately what the likely prognosis is. We have been visiting her daily and hope she can calm down and we can then get her moved to a better ward for a more formal assessment. She had now been in all Easter Weekend and she has only being allowed short 1/2 hour visits a day and is now in for another 14 day period. What is making it extra difficult, is she is refusing to take medication, and is likely due to her bvFTD condition is not able to rationalise that this is the best option if she wants to be released sooner.
The average prognosis for bvFTD is not good and progresses more rapidly if the person is younger like my wife, but I am reminded that every case is unique, which is a cause for hope.
I am currently seeing counselling to help me cope with this news and will be attending a 'dementia' support group soon, so I can help understand what it is like. This link is about another person who has experienced what I am currently going through - http://alzheimersauckland.wordpress.com/category/fronto-temporal-dementia/
I am also staying at her brothers place, as it is good to have family around me. Home feels empty when I am there.
Over the last few years my wife (of over 25 years) has been deteriorating and I was never sure why or what. I believe it started when we started to have problems in our relationship in early 2007. Since then my wife has been through some really terrible things, like losing her dad in late 2007 and her mum in early 2011 and her job later that year, because she could no longer communicate with other adults and she even lost her volunteering job because she would not follow instructions. Meanwhile she has seen me get on reasonably well with my part-time job and my volunteering at the CAB, which has kept me occupied and she feels even more removed from society.
So all and all, her friends, her family and me thought she was suffering some kind of depression, and when you consider what she has been through this is not a bad assumption. However, in the last few years I have been observing what I thought were 'autistic' like thinking, where she has an idea in her head and no matter how much rational discussion you had she would not change her mind.
Moreover, over the last 6 months the situation had got particularly bad in the behaviours she started to exhibit. These would include being at a family outing and she bust into tears and cry that she is all alone, even when we about to sing happy birthday for a 6 year-old niece . This continued for quite some time and it got to the stage her small nieces and nephews did not understand what was going on with her auntie. Next behaviours, is that she would tell her whole life history (mainly all the bad things she had done and none of the positive things) - 'her introduction' - to who she considered important people in her life, like my boss and my bosses boss, and so on, as she feels she needs to be honest. I thought this was very weird and contacted her doctor and had a private meeting with him and passed on all what I was observing, in the hope that when she next went in for check-up, the doctor could do some mental tests and so forth.
Meanwhile her brother had decided to remove her access to his children until she agreed to to go and get some help. We thought that this might be the trigger to get some action on the diagnosis as to what was going on. To no avail nothing changed and she seemed to still be getting worse. I had also retreated more and more into my 'man-cave' as any conversation attempts would inevitably lead to her 'trinity of problems' - She had lost her parents, she has no job and she is all alone, and I realised I could not help her any more.
The next step up of her behaviours was she would now do 'her introduction' to complete strangers. These included bank managers, tellers, supermarket managers, clerks and one day when she meet Len Brown. When she has a particularly bad day, she then also started to scream at me at the top of her voice and this was really upsetting for me. This screaming episodes got so bad I had to move out a couple of weeks ago. This upset her even more and this led to her getting so worked up an ambulance had to be called and she was taken into the emergency ward for acute assessment. It was here where we discovered that she actually had an anomaly in her brain, which looks like a stroke and some deterioration as well. She was sent home, but I remained away. A subsequent family vist they mentioned the fact the deterioration and the behaviours she was exhibiting seemed like to bvFTD (or Pick's disease). A disease that eats away the cognitive ability first and is a rare form of dementia that affects 1-2% of people and usually younger people aged like my wife. In my initial reading up on this I discovered that 'routines' were important for people with this condition, so I decided I should try to return home again. I did and for about a week it seemed it fine.
Then in this last week, the behaviours and the screaming restarted again and I then decided I had to get out of the house as I was for the first time feeling tightness in my chest brought on by stress. However I was still worried about her, so asked her friends to look into her that night and she screamed at them to go away (I had since learned that she had even screamed and swore at complete strangers in the park earlier that day). Later that night her friends waited at the top of the drive and think about what next to do including contacting the Mental Health crisis team after talking to me. She then started attacking the car, so at that point police were called and she was eventually taken to the police station and the 'official wheels' were kicked into motion. She is now in a secure Mental ward getting assessed, it looks like they may need to keep her in longer to make a more formal assessment as to what she is affected by and how long it has been affecting her and ultimately what the likely prognosis is. We have been visiting her daily and hope she can calm down and we can then get her moved to a better ward for a more formal assessment. She had now been in all Easter Weekend and she has only being allowed short 1/2 hour visits a day and is now in for another 14 day period. What is making it extra difficult, is she is refusing to take medication, and is likely due to her bvFTD condition is not able to rationalise that this is the best option if she wants to be released sooner.
The average prognosis for bvFTD is not good and progresses more rapidly if the person is younger like my wife, but I am reminded that every case is unique, which is a cause for hope.
I am currently seeing counselling to help me cope with this news and will be attending a 'dementia' support group soon, so I can help understand what it is like. This link is about another person who has experienced what I am currently going through - http://alzheimersauckland.wordpress.com/category/fronto-temporal-dementia/
I am also staying at her brothers place, as it is good to have family around me. Home feels empty when I am there.
