I just need some advice/help with regards my mother. I live in London and she is in Scotland. I have tried to document briefly her past history and what has happened this last year. She was diagnosed with Vascular Dementia towards the end of last year but we think there has been a misdiagnosis.
BRIEF HISTORY
My mother has had a history of mental health problems, which have been medically documented for well over 40 years. She is now 67.
She has been sectioned on a number of occasions and has spent a considerable amount of time in psychiatric wards. She has had prescribed drug dependency and became an alcoholic.
With the help of medication we saw a great improvement since the last serious psychotic episode, which was about 10 years ago. She was put on lithium after this episode and she was able to lead a relatively normal life.
She has lead an independent life without carers since this time. She has had no need for any other medical or social help. She has not drunk alcohol for a number of years. With the help of her family and her medication she has been able to live a totally independent life.
AROUND THE BEINGINNING OF MAY 2007 AND LEADING UP TO HER HOSPITALISATION ON MONDAY 29TH MAY 2007
Her Psychiatric Consultant decided to change her medication approximately mid/end April 2007. He replaced two drugs (antipsycotic drugs) with one antipsyctoic drug. Her old two tablets were from the old family of anti psychotic drugs and she was put on Quitepene, which is from the new family. This was done with no consultation to the family.
Due to the change in medication two psychiatric nurses visited her daily to ensure that her medication was being taken correctly. Within a matter of days the family noticed a change in her behaviour.
Around the weekend of 12/13th May
The weekend after the medication change she had a breakdown. The nurses were informed that we were very concerned with her behaviour and her inability to look after herself.
The week after she had the breakdown she started to show deterioration in her physical health. She started to become very confused and had increasing tremors. The medical team decided to give her Diazepam to try and alleviate the tremors.
19/20th May 2007
I spoke to my mother on the phone on number of occasions and found her speech to be very slurred and a bit incoherent. We contacted the mental health team and asked that they visit. They called to her house and us that she was ok but the Diazepam would take time to kick in. Later that day we visited and found her on her hands and knees, unable to walk.
The next day her confusion/tremors/speech and mobility had gotten worse. She had lost some of the dexterity in her hands. The psychiatric nurse was still visiting her. The family agreed that the Diazepam was having a more serious affect on her and we did not wish her to continue with it. The medication was removed. She had been on it for three days. No real explanation was given as to why she was on it apart from trying to alleviate her tremors.
Week beginning Monday May 21st
We visited her on Monday and found her condition to have deteriorated again. We contacted the mental health team and informed them that we were still very concerned. A psychiatric nurse contacted her Psychiatric Consultant and he immediately visited her at home.
He seen a dramatic change in her mental and physical state and decided that it would be better to put her back onto her original medication. She had to be weaned off the new medication and the old medication had to be re-introduced. This was started immediately.
Both her mental and physical health continued to deteriorate. She was having difficulty remembering what day of the week it was, her family’s names, where she was etc. Her confusion had greatly increased.
On the Friday afternoon whilst/before the psychiatric nurse visited her she had chronic diarrhoea. She had been unaware that she had lost control of her bowels. We were told that this was not reported medically and was put down to a change in the medication.
She was also showing signs of urine incontinence. The psychiatric nurse was informed of this but again this was put down to a change in her medication. The confusion/tremors/speech and mobility were also continuing to get worse.
Saturday 26th May
It was clear to the family that she needed help at home as it was increasingly difficult for her to look after herself. I came to stay with her early on Saturday morning. I live in London and had not seen her since January 2007 when she had flown down to stay with me for a month. I was extremely shocked by her condition. Her tremors/speech/mobility/confusion were very clear to see. I could clearly see that she would be unable to look after herself and could not understand why the psychiatric nurses had not reported that she needed help at home with her physical care.
Later that morning she lost control of her bowels and bladder. She had been totally unaware of this but became very distressed when I had to clean her and put her in the bath. I also found that there was a very strong smell from her urine.
When the psychiatric nurse visited that morning, I reported my concerns. The bladder and bowels was put down to the change in medication again. No reason was given about the tremors. I complained to the psychiatric nurse about a urine bottle being left with the idea that she would be able to collect a sample on her own. It was clear to me that this would have been impossible for her to do alone. The nurse said that it was very important to get a sample!
Later that day she lost control of her bladder and bowels again. I asked if she had any feelings and she said that there had been no warnings about it. She said that she had no feeling in these areas.
The next day a different psychiatric nurse visited in the morning. I explained again my concerns about her loss of bladder and bowel, worsening tremors and confusion. The nurse did seem concerned about her lithium levels and said she would come on Monday morning with the other psychiatric nurse to take blood samples. I explained about the urine sample and about the very strong smell from her urine.
All Sunday I found her mental and physical state to be deteriorating. I caught her trying to light her eyebrow pencil as if it was a cigarette. She was unable to bathe, dress or feed herself.
Monday 28th May (morning)
On Monday the nurses visited. I had managed to get a urine sample and this was given to the nurses. Laura also took several blood samples. Again I raised concerns about the deterioration in her mental and physical state, particularly the loss of feeling in her bowel and bladder.
Within two hours of the nurses leaving, we were called and told that we had to bring her immediately to accident and emergency. The results of the blood tests taken that morning had came back and showed that her lithium level was 2.8 and that she had lithium poisoning. She was admitted immediately. When the Doctor visited her on the ward that night he was only interested in reducing her lithium level by flushing it our of her system. The Doctor informed us that due to the very high lithium level they would be withdrawing this tablet. The Doctor and nurses had been informed about her incontinence. She was also put on antibiotics for the possible urine infection.
My mother has been in hospital since last year. She was transferred to a psycatric ward. She became deeply withdrawn, would not talk, eat, was or dress.
She had a MRI scan and the consultant said that it showed signs of frontal lobe atrophy. Whilst she was in this ward she had two TIA’s. She was sent for a SPEC scan and this confirmed the TIA’s.
She was then diagnosed with Vascular Dementia. Her prognosis was bad and they said that her deterioration was rapid. She was transferred to a dementia hospital in October 2007. She got progressively worse, was still urine incontinent, could not remember the days of the week etc. She also had started protruding her tongue like a lizard. The consultant said that this was Tardive Dyskensia and was irreversible. He said that this was a side effect from her being taken off the old family of anti psyoctic drugs. She had also become obsessed with cigarettes, and if left with them would have actually eaten them. Due to the TIA’s her smoking was monitored and she was down to about 5 a day.
She was assessed in January 2008 and the consultant said that she would not ever be able to live independently. She was then transferred to a care home in February 2008. When we took her to this care home, she was in a very distressed state.
I visited her again two weeks after her moving to this care home and the change in her was unbelievable. She was no longer incontinent and was able to say the days of the week, knew who the prime minister was etc etc.
The consultant said when she was initially diagnosed with VAD that there would be no improvement and that she would decline rapidly! Basically she has got better and better. She knows money, can you tell you what she done last week, and the improvement in her memory is astounding.
Due to her long psychiatric problems, she had a lot of issues. She left my father to look after 5 children. She has not been able to forgive herself for this and we feel that her problems stemmed from bottling this up.
Two weeks ago she broke down with my sister and spoke and apologised for the first time about her past. Since then, all my siblings have visited her individually and she has opened up with all of us. This is the first time that she has spoken about all the things in her past.
I visited her last weekend. She had an appointment with her dementia consultant. The consultant could not believe the change in her. She actually had a two-way conversation with him, explaining to him about her past. She no longer protrudes her tongue. The consultant says its early days but there is a possibility that she did not have VAD but it was deep clinical depression, which can mimic the symptoms of VAD. He really was astounded by the change in her. He is organising another SPEC scan and wants to see her again in 6 months.
After spending the weekend with my mother it was like being with someone who was nearly normal. Her awareness of past and present is the same as anyone else.
My question is does anyone have experience of this happing? Has anyone got advice? I have read of VAD symptoms being mimicked when someone has had problems with medication i.e. Lithium. I have also read that deep depression can mimic VAD.
As my mother has clearly had TIA’s and brain atrophy, I understand that there has been some damage to her brain, but does this necessarily mean that she has VAD?
Basically, my mum has had a really hard life and she is only 67. She is the youngest by at least 25 years in the home and I want her to come out. I would really appreciate any comments/advice anyone can give me. This year has been especially hard and I do not want my mum to have to be in a home if she could live independently.
Thanks in advance for anyone reading this
A very desperate daughter
Jackie
BRIEF HISTORY
My mother has had a history of mental health problems, which have been medically documented for well over 40 years. She is now 67.
She has been sectioned on a number of occasions and has spent a considerable amount of time in psychiatric wards. She has had prescribed drug dependency and became an alcoholic.
With the help of medication we saw a great improvement since the last serious psychotic episode, which was about 10 years ago. She was put on lithium after this episode and she was able to lead a relatively normal life.
She has lead an independent life without carers since this time. She has had no need for any other medical or social help. She has not drunk alcohol for a number of years. With the help of her family and her medication she has been able to live a totally independent life.
AROUND THE BEINGINNING OF MAY 2007 AND LEADING UP TO HER HOSPITALISATION ON MONDAY 29TH MAY 2007
Her Psychiatric Consultant decided to change her medication approximately mid/end April 2007. He replaced two drugs (antipsycotic drugs) with one antipsyctoic drug. Her old two tablets were from the old family of anti psychotic drugs and she was put on Quitepene, which is from the new family. This was done with no consultation to the family.
Due to the change in medication two psychiatric nurses visited her daily to ensure that her medication was being taken correctly. Within a matter of days the family noticed a change in her behaviour.
Around the weekend of 12/13th May
The weekend after the medication change she had a breakdown. The nurses were informed that we were very concerned with her behaviour and her inability to look after herself.
The week after she had the breakdown she started to show deterioration in her physical health. She started to become very confused and had increasing tremors. The medical team decided to give her Diazepam to try and alleviate the tremors.
19/20th May 2007
I spoke to my mother on the phone on number of occasions and found her speech to be very slurred and a bit incoherent. We contacted the mental health team and asked that they visit. They called to her house and us that she was ok but the Diazepam would take time to kick in. Later that day we visited and found her on her hands and knees, unable to walk.
The next day her confusion/tremors/speech and mobility had gotten worse. She had lost some of the dexterity in her hands. The psychiatric nurse was still visiting her. The family agreed that the Diazepam was having a more serious affect on her and we did not wish her to continue with it. The medication was removed. She had been on it for three days. No real explanation was given as to why she was on it apart from trying to alleviate her tremors.
Week beginning Monday May 21st
We visited her on Monday and found her condition to have deteriorated again. We contacted the mental health team and informed them that we were still very concerned. A psychiatric nurse contacted her Psychiatric Consultant and he immediately visited her at home.
He seen a dramatic change in her mental and physical state and decided that it would be better to put her back onto her original medication. She had to be weaned off the new medication and the old medication had to be re-introduced. This was started immediately.
Both her mental and physical health continued to deteriorate. She was having difficulty remembering what day of the week it was, her family’s names, where she was etc. Her confusion had greatly increased.
On the Friday afternoon whilst/before the psychiatric nurse visited her she had chronic diarrhoea. She had been unaware that she had lost control of her bowels. We were told that this was not reported medically and was put down to a change in the medication.
She was also showing signs of urine incontinence. The psychiatric nurse was informed of this but again this was put down to a change in her medication. The confusion/tremors/speech and mobility were also continuing to get worse.
Saturday 26th May
It was clear to the family that she needed help at home as it was increasingly difficult for her to look after herself. I came to stay with her early on Saturday morning. I live in London and had not seen her since January 2007 when she had flown down to stay with me for a month. I was extremely shocked by her condition. Her tremors/speech/mobility/confusion were very clear to see. I could clearly see that she would be unable to look after herself and could not understand why the psychiatric nurses had not reported that she needed help at home with her physical care.
Later that morning she lost control of her bowels and bladder. She had been totally unaware of this but became very distressed when I had to clean her and put her in the bath. I also found that there was a very strong smell from her urine.
When the psychiatric nurse visited that morning, I reported my concerns. The bladder and bowels was put down to the change in medication again. No reason was given about the tremors. I complained to the psychiatric nurse about a urine bottle being left with the idea that she would be able to collect a sample on her own. It was clear to me that this would have been impossible for her to do alone. The nurse said that it was very important to get a sample!
Later that day she lost control of her bladder and bowels again. I asked if she had any feelings and she said that there had been no warnings about it. She said that she had no feeling in these areas.
The next day a different psychiatric nurse visited in the morning. I explained again my concerns about her loss of bladder and bowel, worsening tremors and confusion. The nurse did seem concerned about her lithium levels and said she would come on Monday morning with the other psychiatric nurse to take blood samples. I explained about the urine sample and about the very strong smell from her urine.
All Sunday I found her mental and physical state to be deteriorating. I caught her trying to light her eyebrow pencil as if it was a cigarette. She was unable to bathe, dress or feed herself.
Monday 28th May (morning)
On Monday the nurses visited. I had managed to get a urine sample and this was given to the nurses. Laura also took several blood samples. Again I raised concerns about the deterioration in her mental and physical state, particularly the loss of feeling in her bowel and bladder.
Within two hours of the nurses leaving, we were called and told that we had to bring her immediately to accident and emergency. The results of the blood tests taken that morning had came back and showed that her lithium level was 2.8 and that she had lithium poisoning. She was admitted immediately. When the Doctor visited her on the ward that night he was only interested in reducing her lithium level by flushing it our of her system. The Doctor informed us that due to the very high lithium level they would be withdrawing this tablet. The Doctor and nurses had been informed about her incontinence. She was also put on antibiotics for the possible urine infection.
My mother has been in hospital since last year. She was transferred to a psycatric ward. She became deeply withdrawn, would not talk, eat, was or dress.
She had a MRI scan and the consultant said that it showed signs of frontal lobe atrophy. Whilst she was in this ward she had two TIA’s. She was sent for a SPEC scan and this confirmed the TIA’s.
She was then diagnosed with Vascular Dementia. Her prognosis was bad and they said that her deterioration was rapid. She was transferred to a dementia hospital in October 2007. She got progressively worse, was still urine incontinent, could not remember the days of the week etc. She also had started protruding her tongue like a lizard. The consultant said that this was Tardive Dyskensia and was irreversible. He said that this was a side effect from her being taken off the old family of anti psyoctic drugs. She had also become obsessed with cigarettes, and if left with them would have actually eaten them. Due to the TIA’s her smoking was monitored and she was down to about 5 a day.
She was assessed in January 2008 and the consultant said that she would not ever be able to live independently. She was then transferred to a care home in February 2008. When we took her to this care home, she was in a very distressed state.
I visited her again two weeks after her moving to this care home and the change in her was unbelievable. She was no longer incontinent and was able to say the days of the week, knew who the prime minister was etc etc.
The consultant said when she was initially diagnosed with VAD that there would be no improvement and that she would decline rapidly! Basically she has got better and better. She knows money, can you tell you what she done last week, and the improvement in her memory is astounding.
Due to her long psychiatric problems, she had a lot of issues. She left my father to look after 5 children. She has not been able to forgive herself for this and we feel that her problems stemmed from bottling this up.
Two weeks ago she broke down with my sister and spoke and apologised for the first time about her past. Since then, all my siblings have visited her individually and she has opened up with all of us. This is the first time that she has spoken about all the things in her past.
I visited her last weekend. She had an appointment with her dementia consultant. The consultant could not believe the change in her. She actually had a two-way conversation with him, explaining to him about her past. She no longer protrudes her tongue. The consultant says its early days but there is a possibility that she did not have VAD but it was deep clinical depression, which can mimic the symptoms of VAD. He really was astounded by the change in her. He is organising another SPEC scan and wants to see her again in 6 months.
After spending the weekend with my mother it was like being with someone who was nearly normal. Her awareness of past and present is the same as anyone else.
My question is does anyone have experience of this happing? Has anyone got advice? I have read of VAD symptoms being mimicked when someone has had problems with medication i.e. Lithium. I have also read that deep depression can mimic VAD.
As my mother has clearly had TIA’s and brain atrophy, I understand that there has been some damage to her brain, but does this necessarily mean that she has VAD?
Basically, my mum has had a really hard life and she is only 67. She is the youngest by at least 25 years in the home and I want her to come out. I would really appreciate any comments/advice anyone can give me. This year has been especially hard and I do not want my mum to have to be in a home if she could live independently.
Thanks in advance for anyone reading this
A very desperate daughter
Jackie