Newbie - Advice needed - VAD or misdiagnosis

Discussion in 'ARCHIVE FORUM: Support discussions' started by jackiegray, Jun 3, 2008.

  1. jackiegray

    jackiegray Registered User

    Nov 5, 2007
    22
    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
     
  2. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    632
    coast of texas
    Jackie, first of all welcome to TP. You've done an awesome job of keeping track of your mothers life. Keep it up. Mom has AD and has had the tia's so I can understand what you are asking.

    /first of all I don't want to sound rude. Your moms health is important to you, that I understand...but any disease of the brain is not fun to handle. The consultant wanted to redo the scan of her brain in a few months. Go for it. It sounds as if he/she may have some thoughts in his mind.

    I know for a fact that there are diseases that can mimic AD. It sounds as if your consultant may be well aware of this. Initially it took a year for moms dr. to flat out say she had AD. During that time she had scans of the brain and other heath issue problems handled.

    When mom was in her teens she had mental problems and was treated so in a harsh way. MY father and grandparents treated her with kid gloves and only in the past 10 years have I come to appreciate what they taught me for caring for her. With your mom having problems and being in a home I would question also that maybe she had become grossly scared of her surroundings and was able to muster "life" again after she felt safe.

    I commend you and applaud you for taking the time to care. I know others will have more answers or advice...I just don't want YOU to build yourself up. This way any news you are prepared for and any good news is cause for celebration.

    HUGS

    Nancy
     
  3. germain

    germain Registered User

    Jul 7, 2007
    342
    Hello

    and welcome to TP.

    Can't give you any kind of info based on any medical knowledge - just our experience.

    Just to tell you that our Mum had mixed VAD/Alzheimers. After each TIA she would go really badly downhill for a while but the amount of "miraculous recoveries" she then made was astounding.
    Ove the years tho' things got worse and there came a point where there was no improvement - just a steady decline. Question the consultant non-stop until you are happy with the info. you have.


    I think someone has posted in the past that the brain can compensate for slight losses by using a different part - perhaps this has happened over time to your Mum ? Doc will be able to comment for you.


    I think if TIAs are involved then it DOES mean she has a degree of VAD, and the scans are especially telling -BUT this doesn't rule out other things on top - others with a bit more knowledge may be able to help you on this - and the Alzheimers Factsheets on this site are very informative.


    Sorry can't help with the drugs questions . But our Mum had a terrible response to being put on Prozac and it took a long while for the effects to go ( after she went "cold turkey " in the hospital )


    Anyway - welcome again - you'll find lots of support and understanding here and someone somewhere (sadly) will be able to give better advice based on their own experiences.


    regards
    Germain
     
  4. jackiegray

    jackiegray Registered User

    Nov 5, 2007
    22
    Thank you - Advice needed - VAD or misdiagnosis

    Dear All

    Thank you very much for taking the time to read my post and for the replies. I should have said sorry in advance for the length, but this was the edited version!!

    I understand that due to the TIA's that there will be some brain damage, I have also read that another part of the brain can compensate when there has been some brain damage.

    Everything I have read and also what her consultant said at the beginning of the year, ie her regaining her reasoning skills, being able to count, knowing the days of the week and the time, should not have happened. This is why we are baffled and feel that her symptoms where more deep clinical depression being mimicked as VAD. But I am not a DR. I only want to hear from anyone else who might have had a similar experience or know of something like this happening.

    I understand that the brain is very complex and that no two people are the same. Just wanted some help and advice from people who have had experience of something like this happening.

    I don't want to get my or my mums hopes built up but I have to say that her situation looks 110% better than it did 4 or 12 months ago.

    Once again thank you all for taking the time to read my post and give your replies. Any information I can assimilate, I will be able to be in a better position to discuss with her consultant.

    The last year has been so hard on my mother and her family and we just want to make sure that the right decisions are being made for her. She is our priority.

    :)Jackie
     
  5. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    632
    coast of texas
    Don't apologize for the length of your post, it's ok.....I do it quite a bit, also.

    You talked of the 110% better. Mom is late stages AD..so there is some difference. I want to bring something to the light here tho....mom had 3 stroke in late January and lost all movement in one arm and her ability to comprehend to chew. She was on a babyfood diet for over 2 months and during that time much therapy was done on my part to help her. She is back to soft foods that need to be chewed and has talked and acknowledged things around her. Hence at that point she was a lot better.

    During the early stages she would have days where she couldn't get the day straight but also had days where she knew the date better than me. I think if you read further into earlier threads you will get more of an idea of AD. No 2 situations are alike.

    Was talking to a friend today about this and he mentioned that not only strokes are a problem with the AD mask. He also mentioned severe schizophrenia off meds and severe depression off meds....his thing would be to watch her, tho he said if she had a severe history of mental disease he would probably request the family to do an asissted living enviroment if they wanted her out of the hospital. Understand tho I am in the US. Asisted living is like having a miniature apartment in a nursing home. She has a bathroom, living room, bedroom and partial kitchen (microwave..no stove and small fridge) she would have dinner in a main hall with others if she liked and could leave and go do things away from the home during the day. Letting staff know of course. A lot of elderly couples and singles choose to do this here as they have both independance and freedom. Without the added headache of a home to take care of.


    HUGS

    Nancy
     
  6. bebee1

    bebee1 Registered User

    Dec 4, 2007
    5
    wallingford
    medication changes.

    without being specific , I feel sure this sudden deterioration was linked to change of long term medication. As an ex-nurse I've seen some distressing results coinciding with changing antiphsycotic drugs, in particular Lithium. hopefully things will now stabilise. best wishes.
     
  7. jackiegray

    jackiegray Registered User

    Nov 5, 2007
    22
    Good News & not so good news

    Hi
    Just wanted to see if anyone has had a similar experience.
    Since my last posting, my mum has continued to improve, she is still in the care home but I have been fighting to get her out into some kind of independent living. Unfortunately I have been at logger heads with my sister who still believes that mum should stay in a care home facility, even although I am willing to have her come to live with me if we could not get her into independent living. The situation between my sister and I has broken down and it has started to affect my mum. As her history of nearly 40 years has been deep depression, she has reverted to type and taken to her bed, she will not get out of the bed in the care home, unless family go into to get her. When she is out with me or one of her nieces she begs not to be taken back and has continually said that she does not want to be there and wants to go home or some kind of independent living. She had independently said that she knows she will need some kind of help at home. She has been in a clinical environment for over 18 months now, not doing anything for herself independently. Her confidence has been shot to be pieces and this will need to be rebuilt. She will need to learn some of her life skills again ie. Cooking, shopping etc.

    So the update is we had appointment on Friday with the dementia consultant, after a lot of talk and me backing him into a corner with regards the astounding improvement in my mum he finally confirmed that my mum does NOT have vascular dementia. He said that she did still have the frontal atrophy but this was static and that my mum would NOT deteriorate. He felt that as she was depressed that a care home was still the best place for her as the atrophy had damaged some of her reasoning skills and they would not come back.
    An example had been given to me that:
    “If I was to take mum to a shop and give her money to go in to buy a loaf of bread then she would be able to do this, but if she was living alone and she run out of bread she would not have the sense to know that she would have to go out on her own to buy some more”.
    I asked my mother this question and her simple answer was “don’t be so stupid I would go to the shop and buy a loaf of bread”.
    My mum has clearly said to my sister, the DR, and social workers that she does not want to live in a home. She either wants to live independently or to come and live with me in London. My sister is against this and wants her to remain in a home. The DR placed an Adult Incapacity Certificate against my mum when he previously diagnosed her with vascular dementia. He told my sister that he is going to ask a colleague to review this with the possibility that it is cancelled and means that my mother is deemed capable of making her own decisions. As far as I am concerned this should happen without any questions.

    I feel that the medical profession and the social workers are not fully appreciating my mum’s mental health history and they are seeing a woman who cannot fully articulate for herself lying in bed in the care home day in day out and saying that she is better of there as people are looking after her 24 hours. I think because of what has happened to her with her medication change last year they are being even more than usually cautious as they don’t want to be sued. (I have made a formal complaint to the medical board with regards my mother’s treatment from April 2007 last year and this is still ongoing).
    The bottom line is my mum does not want to be there and she is lying in her bed because she is depressed about being there and that my sister and I have argued over this.
    I was just wondering if anyone else has had any experience of the Adult Incapacity Act (this applies in Scotland only) and if anyone has come across a situation like this before.
    I want what’s best for my mum and as she is only 67 and has not got Vascular Dementia then there should really not be even any argument about her being in a nursing home.

    I have my mum staying with me for a month, and as we left the Dr on Friday he said to me " I know what you will be doing with your mum over the next month, getting her shopping, cooking etc." I said to him of course I would as this is normal things which she should be doing anyway"!!!!!!

    I would appreciate anyone’s views/suggestions.
    Kind regards
    Jackie
     
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #8 Margarita, Dec 9, 2008
    Last edited: Dec 9, 2008
    So that mean damage has been done to your mother brain .



    please to read that, even thought it dose sound strange, because how can he be 100 percent sure your mother won't have another TIA . as his seen signs of frontal lobe atrophy in MRI scan, I thought frontal lobe atrophy is Pick's disease so Is progressive . Sorry just sound very confusing .

    So he saying that frontal lobe atrophy is not progressive ?

    My mother would say the same to me .

    My mother also has loads of time of astounding improvement.

    Sorry if I sound so disheartening . may be your mother on a platter.
     
  9. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dear Jackie

    You are clearly a highly intelligent lady, and not taking things lying down - good for you!

    I always thought that VAD and TIAs went together, perhaps I am wrong. Well 3 weeks ago I had a TIA (my first, and hopefully my last), but I have certainly not been diagnosed with VAD. With most brain "damage", but particularly with strokes, the brain can repair itself, or use another part of the brain to perform the same function. It sounds as if this has happened with your mother.

    I am no medic, but I would say don't blame the doctors too much - the brain is indeed a very complex thing, and I imagine it is difficult to exactly pinpoint what is going on in it and why, and what the outcome will be. They probably have to err on the side of caution and what is most commonly the cause.

    Well, your post is totally contrary to the last one I read, where the sister of the main carer was insisting that mum should NOT go into a care home. Sisters seem to think they are remarkably good at knowing what is right - in many ways I am glad I haven't gone one.

    Without knowing your mum, I would say give it a whirl in the outside world. I chose a home for my mum because she was a danger to herself. Running out of bread is not a real danger is it? Not if carers are going in each day to check that she is eating, or maybe having meals on wheels or whatever is the equivalent so you know she has food each day. Make sure she has some crackers, you can put jam and cheese on those just the same as bread. Maybe some form of sheltered housing would be ideal. I certainly don't feel that in her present condition she is a candidate yet for a care home. My mum was getting lost, going out at night, not knowing where she was. People (including the police) had to bring her home. Your mum doesn't seem to be in that state, which was a real danger. She might not look after herself completely on her own, but good enough to enjoy life, which at the moment she is not doing.

    See how the month goes with you. Perhaps give her tasks to do such as making a shopping list ready for tomorrow. The first week tell her what you are short of, bread, cheese, marmalade, ham, salad. The next week ask her if you have enough bread, cheese etc. The third week don't ask her anything, just ask her to check the fridge. Don't tell her what to put on the list, see how she copes herself. See too how she copes at the checkout - get a few personal things for her that she has to pay for herself and see if she manages it okay. I bet she will.

    Like you, I don't think it is time to go for the care home permanently.

    Incidentally, don't apologise for the length of your post - mine is probably longer and I haven't half as much to say.

    Love, and let us know how you go on,

    Margaret
     
  10. jackiegray

    jackiegray Registered User

    Nov 5, 2007
    22
    thank you

    Thank you very much for reading my message, I sincerely appreciate all input and replies.

    I know that my mother has suffered some kind of brain damage and I am sure even the DR's would not be able to pinpoint exactly what it is as her case is very complex. But she can live a relatively normal life on her own.

    She went into this situation last year with already well documented mental health problems; she was diagnosed many years ago as bi-polar and psychotic. This is where her problems stem from.

    Her brain atrophy was diagnosed when she was in the Psychiatric ward earlier last year and the consultant said then that he did not know when it had happened, it could have been six months ago or 6 years ago but he did not feel then that this was anything to do with her current situation as it was. The only change which took place last year was that her Psychiatric medication was changed and she had an immediate severe reaction to this and ended up with lithium toxicity. Her deterioration from then was immediate. Please forgive me if I don’t seem to have much faith in the Dr’s, as I believe that my mother would not be in this position if her medication had not been changed last year. The Dr who changed her medication did not carry out due diligence and did not review my mother’s history, if he had he would have seen that she had a history of severe reactions to any kind of medication change.

    When she went into the care home she did tick all the boxes for VAD, but within two weeks she started to improve and just got better and better. At the time of her entering the care home the dementia consultant was absolutely categorical that my mum would never get any better and that in fact her dementia was rapid and she would only get worse.

    When I took my mother to the care home, the care home manager took my sister and I into her office and could see that I was very upset, she said gently, you do realize that your mum has dementia and that this it is progressive, she will not get any better!!!! Well it is quite simple, my mother has and she does not want to be in the care home, she wants her independence back but does know herself that she will need some kind of help at home and this is what I must fight for!!

    She is doing great at mine and is well able to look after herself, I am trying to rebuild her confidence and let her know that she is able to do things herself. With the support of my children and husband we will work hard this next month to give her some kind of normal life and hopefully go some way to building her confidence up.

    I will have a battle getting her out of the nursing home and would appreciate anyone letting me know if they have experience of The Adult Incapacity Act in Scotland.

    My mother wants me to video her so that she can have her wishes recorded with regards not staying in the care home and she wants me to send it to the Dr's and social workers. Surely some professional should be listening to what her wishes are!

    Once again thank you very much for taking the time to read my messages and reply.

    I do have a battle on my hands but as it is only to give my mother a decent quality of life I am prepared to do anything to help her.

    Warm regards
    Jackie :):)
     
  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #11 Margarita, Dec 10, 2008
    Last edited: Dec 10, 2008
    Sorry I have no experience of that act . Only the one in England .


    But I would of thought
    That as long as your mother has not been section under any mental capacity acts. That your mother would be free to live where she wanted to.

    Has your mother been section under any mental capacity acts in Scotland?
     
  12. jackiegray

    jackiegray Registered User

    Nov 5, 2007
    22
    Thanks for the reply, and no my mother has not been sectioned. When my sister and I tried to get Power of Attorney earlier this year the Dr said that as she had been diagnosed with VAD then she was not capable of making this decision.

    The Dr did say on Friday after saying that she did not have VAD that he was going to get ask a colleague for advice about reversing this. But I am still unsure what it means that she has been deemed incapable of making a decision.

    She can clearly speak her wishes and understands what it means. So still unsure what to do.

    Regards
    Jackie
     
  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #13 Margarita, Dec 10, 2008
    Last edited: Dec 10, 2008

    now that is very harsh to say , as how did the doctor know your mother was not mental capable of making decision !

    he would of legally had to do a mentally capacity test on making a decision. did he do that ?

    as just because someone is diagnosed with VD is does not mean they do not know how to make a decision , it all depends on what stages they are in the VD , and they would only know that if they do the mentally capacity test on making a decision.

    Read this as it cover Scotland

    http://www.mentalhealth.org.uk/info...apacity/mental-capacity-act-2005/#Who_decides

    So did your doctor follow mental capacity act the Code practice ?

    This tell you what the Code is and what the doctor should of followed .

    http://www.dca.gov.uk/legal-policy/mental-capacity/mca-cp.pdf


    Get someone Dr to do ( the test) assessment to on your mother , then go from there .

    if it has not been done already ?

    if not ask him why he has not had any regard to the Code of Practice, then give to your solicitor a written convincing reasons why he has not ;)

    get him to the test on your mother .

    So now you may understand why I say , forget about the diagnose its irrelevant .
     
  14. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hi Jackie

    Margarita has done the homework. Read what she suggests. As an amateur I cannot see any reason what you cannot get power of attorney for your mum, as you say at the moment she is behaving normally. Get it done, if you can, asap. It sounds as if she knows what is what, that is important.

    Then, when you know you can make decisions for her, you can get on and make decisions. Decision number one to me seems to be that she can find a place to live independently. Sheltered housing or similar. It is a most unusual situation to have someone declared in need of care and for that to then be reversed, but from what you say, that is what has happened, and you have to fight for justice for your mum.

    Good luck, and let us know how you go on.

    Margaret
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Just to clean one thing up , when I say
    So now you may understand why I say, forget about, diagnose its irrelevant.

    I am only referring to in making a decision in where she wants to live.


    Because if any form of dementia has been diagnosed and a person has been cared for all their needs in a care home for a very long time , there no way that they can live independent on their own in whatever kind of accommodation they would move into independently . Your be putting there life in danger .

    That like saying that my mother who has a dementia can go into sheltered accommodation, because she improved so much since she been living with me .

    Does sounds really positive, but is your mother going to be living full time with you ?
     
  16. jackiegray

    jackiegray Registered User

    Nov 5, 2007
    22
    Thank you very much for the replies and I am studying the mental capacity information.

    I am not sure what tests the Dr has done on my mum but have written him a letter asking him to confirm in writing that she does not have VAD, also to confirm what her actual diagnosis is and also to confirm how he came to view her as unable to make a decision.

    My mum really would be ok in sheltered housing and this is what she wants. But if we don't succeed in this battle then the idea is that she comes to London to live with me. Unfortunately my sister does want her to stay in a nursing home and will fight to keep my mother there. My sister does not want her to live with me in London even although my mum has stated to her that if she cannot get sheltered housing then she would want to live with me. My sister also is not listening to my mum’s views, unfortunately...

    My mum has said to her niece on more than one occasion that she would rather be dead than stay in a care home for the rest of her life.....

    Please believe me that I have not gone into this with my eyes or mind blinkered. When my mum was put in the care home in February, she really was incapable of looking after herself. This is not the case now. She suffers from depression but that should not mean that you lock someone up because of this.

    Once again thanks for all your help and thoughts.

    Jackie
     
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Does anyone understand what it feels like to be told your mother has Alzheimer, given book all about Alzheimer’s.
    Then see my person improving under their care, 5 years pass and my mother still know me, all the people around her and still social active can interact with people around her.

    Your whole life is tip upside down. Then 6 year move forward. They are told no they do not have Alzheimer’s they have VD
    That like telling someone they have cancer, they’re going to die in 2 years time. Then 6 years down in time there still alive and are told they do not have cancer, they made mistake.

    Dementia does not trash carer’s life. The services, the lack of understanding of dementia does it .

    This may sound harsh, don’t live in a fool paradise. if a dementia has been diagnosed, they never improve get better, but with the support of a carer be it in good quality care home or living with the carer in their home with family around them They can lead a good quality of life.

    You will have to live it , to believe it .
     
  18. jackiegray

    jackiegray Registered User

    Nov 5, 2007
    22
    updated diagnosis

    I received written confirmation from my mother’s Dr that she does not have vascular dementia nor does she have picks disease and in fact he said that she is not thought to be suffering from any kind of dementia at this time!!!!

    He said that her diagnosis is recurrent depression with coincidental brain atrophy which might be from alcohol abuse. Basically he has confirmed what I have been saying since April last year.

    The Dr said that he deemed her incapacitated to make a decision prior to diagnosing her with Vascular Dementia but he stated that as her condition has obviously improved he needs to assess her capacity again.

    My mother’s history of depression and the subsequent lithium toxicity due to the mismanagement of her medication change in May 2007, brought on this deep clinical depression.
    My mother has been staying with me for a month. She has been living a normal life during this month. I funded an OT assessment in my home during this time. The OT assessor reported that my mother was OK, she failed in some calculus and memory recall, but this would be expected as her education level is very poor. Her reading, maths and writing skills are very basic. The OT assessor reported that she needs to be immediately assessed for sheltered housing and that a care home was not a suitable place for her. My mother stated to them on several occasions the reasons why she was not getting out of bed in the care home and that she wanted her independence back.

    I took her back to the care home on Saturday evening. I telephoned the care home repeatedly yesterday and she refused to get out of bed. A nurse whom I spoke to this morning said that the environment of the care home was not good for my mother and this is what is making her depressed.

    Basically, I don’t know where to turn; I have forwarded the OT report to social services and have also contacted an independent advocacy service who is going to take on my mother’s case.
    Does anyone have any other suggestions on how to push the Dr and social services to get my mother back out to live in the community.

    I feel that the Dr and social services and being more than usually cautious due to a fear of being sued with regards my mother’s treatment going back to May 2007.

    I understand that this is a dementia forum and as the Dr has confirmed that she does not have this at this time, then maybe I should be posting in a mental health forum, but as I started this back in June 2008, I just thought that someone would have followed this and be able to point me in the right direction.

    Once again thank you all for taking the time to read my posts, I really do appreciate it, this last 19 months as been hell and its good to be able to write about the siutation and get some answers....
    Thanks
    Jackie
     
  19. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Well Jackie

    All I can say is keep at it. It is not often we have a story such as yours where a diagnosis is overturned and a person is possibly able to return to the community. It is a fantastic opportunity for you. Is your sister still so resistant about it?

    Now, I know nothing about the medications she was on, and have no medical knowledge, but is it possible that at the time your mum went through her severe confusion and loss of bowel and urinary control, that she was back to drinking alcohol without anyone knowing? It would explain a lot. But that is just my suggestion as someone who knows nothing except that I know I drink too much, and it does affect my bowels and I know of others in the same position in our 50s. My father was a regular drinker of too much (though I would not have classed any of us as alcoholics), but in his later years he found that even moderate amounts of alcohol would affect his bowels, including during the day.

    Just a thought, love, cos I want you to consider all possibilities. I truly hope that you can get your mum into the accommodation she needs to have so that she has a better quality of life and the depression lifts. I feel she will need mental support as well as practical support in the initial stages, but the best of luck to you, and how wonderful that your mum has you to help her.

    You say your mum had a hard life, so she now deserves as much help as she can get (well, so does everyone else too), fingers crossed that she gets it.

    Stay strong, you have been a star so far. Your mum is my hope for 2009. Keep us posted please, we could do with some good news.

    Much love

    Margaret
     
  20. AnnS

    AnnS Registered User

    Apr 26, 2008
    15
    South
    Don't be afraid to question doctors

    Jackie,
    Hi sounds as though you have had a really tough time. I am in a similar situation in that I am down south and mum is in Scotland. Mum wasn't misdiagnosed but my experience of the Scottish system is don't be afraid to question what the doctors are doing. Mum ended up sectioned in a dementia hospital and to be honest I felt as though it was creative chemistry when they came to changing her meds. I'm sure medical professionals may disagree but it really was as if the doctors would try one thing and if worked great and if not they would just try something else (meantime mum was mentally all over the place). I phoned every week and asked to be told what changes if any had been made to her medication. I would then do a bit of research and then contact the consultant to ask about the new prescription. I know that might sound terribly arrogant but I had my mums anti-depressant changed and got her off anti-psychotic drugs (that aren't even licensed for use on alzheimer patients) -it was just a case of quering in an non-confrontational manner. So whilst I'm sorry that I can't help with the misdiagnosis query I would say don't be afraid to assert to the doctors that they need to be taking to you before they change any meds an explain any proposed changes.
    Meantime good luck and I hope you get things sorted soon. Take care.
    Ann
     

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