Newbie - Advice needed - VAD or misdiagnosis

[jackiegray]

Thanks once again for your replies.

Yes my sister is still very resistant to the point that when I went up on 5th Dec to collect my mum, she refused to give me her passport. She will not speak to me or discuss it. My mother was with me for a month and she did not phone once. My mum phoned several times and left messages but unfortunately the phone calls were never returned. She has not visited my mum since I took her back on Saturday night. Very sad, but the only person suffering is my mother, because she idolizes my sister….

All my mum’s symptoms in May 2007, the tremors, loss of bowels etc., were down to her lithium level being dangerously high. When the Dr changed her medication in April they should have been doing blood screening tests daily, they had not checked her blood level since the February. This is how she ended up being rushed into A&E and being put on a drip, they had to flush the lithium out of her system. Thank fully she has not had a alcoholic drink for around 7 or 8 years and had no interest in it. She actually was an alcoholic who hated the taste of it and just drunk to blot her past out.... very sad.. and unfortunately not uncommon

Thanks again for your comments and I am on the case to get my mum rehoused. I have contacted an independent advisory service who is going to take her case on. I have sent letters with the OT report to her Dr and am currently badgering social services.

Watch this space and I will let you know how I get on…

Jackie

 

[jackiegray]

just another wee update with regards my mum

Hi

Just wanted to update everyone with regards my mum.

I returned my mother back to the care home at the beginning of January (much against her wishes).

I immediately faxed her consultant a copy of the occupational health report which had been done in London to him with details on how she coped staying with me for a month. I received no reply so faxed a follow up letter to the consultant and social services. I made several phone calls to the consultant’s secretary and was fobbed off each time with “we will get him to call you back”.

I have since found out that he has been off sick since January and his secretary does not know when he will be back. I explained the situation that social services could not make a decision with regards sheltered housing as they were waiting to hear from the consultant. I pushed the issue with his secretary and she got a locum consultant to visit my mother 5 weeks ago. He interviewed my mother and she was clearly verbal and coherent to him with regards her wishes about not staying in a care home. He refused to make a decision with regards my mother’s position due him not knowing her. He wrote a report and said that he felt that it would be better to wait until my mother’s consultant returned from sick leave!! The secretary still could not tell us when he was returning.

I took my mother back to stay with me at the beginning of March. She has now decided that not only does she not want to return to the care home but she wants to stay near me in London. She tried to speak to my sister with regards this but had no replies. I contacted my mother’s advocate in Scotland to let her know about the situation and she contacted social services for me. Apparently as my mother is not sectioned and has no legal order against her, there is nothing they can do about me having my mother to stay with me permantley.

My mother was adamant about her decision, so after much deliberation, I have given notice to the care home and informed social services.

My sister has subsequently phoned and has been very nasty to my mother with comments like “I have wiped my hands from you”! My mother is very upset as she loves my sister but she said she has still made her decision and she does not want to return to either the care home or Scotland.

So my mother is staying with me and I will try and organise sheltered housing for her near me, but in the meantime there are no problems with her living with me and my family. She has bloomed this past month, is doing a lot more things independently and generally getting on with her life.

I am absolutely disgusted with how not one service provider in Scotland would make a decision with regards my mother, she was misdiagnosed with dementia and I feel that due to this they were too frightened of making another mistake, but all the while my mother was suffering.

I have contacted the local MSP in Scotland and given them the facts about my mother’s case, as these past nearly two years have been a nightmare. They are going to make a formal complaint to the health board and social services on my mother’s behalf. If it saves another person going through what my mother has then it will be work well done.

I am under no illusions with regards my mother’s care, she might not have dementia but I am well versed on her mental health problems. I have went along with my mother’s decision as she deserves another chance at life, to have a diagnosis of dementia reversed is I know very rare and she just deserves another chance to live an independent life, not in a care home.

Once again I would like to thank all of you who have read my posts, and listened to my rantings and who have taken the time to give me advice. I wish you all well and your families. I got a lot of useful information from this website..

With warmest regards

Jackie

 

[jenniferpa]

Jackie - I have to say my heart lifted when I read your post. I'm sorry that your sister has taken this position but what wonderful news for your mother. Well done to both of you.

 

[jackiegray]

Thank you Jennifer... I am really trying my best for my mother but unfortunately my sister is putting a spanner in the works at every avenue. I have never dealt with my mother finances before and she has told the care home that she will no longer be dealing with financial matters. My mother tried to talk to her last night and she put the phone down. The care home says that my mother’s account is in arrears for Feb & March and I have just received the following from the care home manager:

QUOTE
However I can confirm that as you decided with your mother for her not to return to the Care Home. Your sister has advised us that she will no longer attend to any financial matters and she has instructed us to contact yourself

As you have indicated your mother has capacity we forward all outstanding bills to her and yourself for your attention. Unfortunately if the account is not settled a debt will accrue on your mothers account and company procedures will come in to play and this may include incurring interest on any outstanding debt

I would be obliged, as your mother’s representative, if you could attend to this matter
END QUOTE

I am disgusted by the tone of the email. My mother made a decision not to be locked up and the care home manager is unhappy, she never acknowledged the fact that my mother did not have dementia!!

I have forwarded the details onto the local MSP for my mother’s home town, I am not letting them away with bullying us just because my mother wants to live an independent life.

The battle goes on!!!!!!!!!!!!

Jackie

 

[jackiegray]

update on my mother

Just in case anyone was interested just wanted to update with my mother’s situation.

She has now been living with me since Feb 2009. She has regained her confidence and her life skills. She learned how to work the all the kitchen appliances, can cook, shop and basically look after herself. She is fully independent and is thriving. She is enjoying her life and is so pleased that she is not living in a care home. She is 95% better which is a miracle considering where she was in 2007/2008.

She is currently trying to get some kind of sheltered housing near me. Her incorrect diagnosis of dementia is still haunting her. To get sheltered housing she needs copies of all her personal notes and discharge notes from the care home. She sent a letter to the care home manager who has since wrote back informing her that she cannot give her copies of these as she was deemed incapacitated and her diagnosis is dementia. We wrote back to the care home manager enclosing a copy of the letter from the Dr stating that she does not have dementia but is suffering from deep clinical depression. The care home manager will not accept this as she said the letter was written in December 2008. She said that my mother needs an assessment from a psychiatrist to say that she is of sound mind to request copies of her records. My mother does not want to do this as she says “there is nothing wrong with me”. She said that mentally she is ok at the moment and after 40 years of having to visit psychiatrist she just does not want to do it. She says that if she felt there was something wrong with her then she would.

We have made a complaint to the care commission as this seems to be grossly unfair to my mother.

I was just wondering if anyone has had any experience of getting copies of medical records when someone had been deemed incapacitated. My understanding of the Adult Incapacity Act in Scotland is that the certificate is only valid for a year. And if my mother has written confirmation from a Dr that she does not have dementia then surely this should be enough for her request for copies of her medical records to be granted.

Thanks to anyone reading this, I know that from my mother being initially diagnosed with VAD to now only be suffering from deep clinical depression is very different from the other stories on this website, but sometimes Drs do make mistakes and we all should be aware that this can happen. My sister is still not talking to my mother due to her decision to leave the care home so my mother’s story has not ended all well but the main thing is that she is living an independent life again, making her own decisions.
Jackie

 

[sleepless]

Hello,

I am too 'blown away' by your post, and your previous ones, to make a coherent comment, but just two things --

"Well done."

and it just illustrates so well that while the 'experts' are so busy dotting thier i's and crossing their t's, people are genuinely suffering out there. It's so sad.

Thank you for posting,

sleepless

 

[jenniferpa]

Jackie, I'm so please you have come back to update this. I am appalled that that care home manager is still being so difficult about the records though (I'd like to use another word but I suspect that the software censor would delete it).

I know very little about the relevant legislation in Scotland, but having just had a very brief read of the outline, I absolutely fail to see that this wretched woman has a leg to stand on. It was never intended that this act should be an all or nothing deal, but the way this person is acting is effectively making it so. You do seem to be stuck in a catch 22 situation.

I'm not sure how much help we can be (except to offer moral support and you have that in spades), but I'll see if I can find anything else out.

Take care

 

[jenniferpa]

Jackie - a few disjointed points.

I assume there is a certificate of incapacity in existence somewhere? The form in question http://www.scotland.gov.uk/Topics/Justice/law/awi/forms/Medical-Report-Forms/5299 indicates that the expiration date of the certificate would normally be for one year but can be no later than 3 years from the date the certificate is issued. I'm not sure where you stand with regard to that timing.

I assume you've seen this page? http://www.scotland.gov.uk/Topics/Justice/law/awi/Links I was wondering if one of the legal services might be able to help.

I assume your mother is now registered with a GP. Is there no possibility that he/she could request all copies of records from the care home? (Clutching at straws here). Have you tried sending a registered letter signed by your mother requesting these records? I assume you probably have. Finally, have you tried talking to whoever it is who is requesting these records with regard to sheltered housing. Let's face it, if you hadn't told them these records exist, they wouldn't have known, and obviously, they have no way to obtain them (as you and your mother can't).

I'm sorry your mother is not willing to see a psychiatrist but I really can't blame her. I was wondering though - who is now treating her depression? From what I see of the act, any medical practitioner could sign the form and thus any medical practitioner could revoke it.

 

[Jancis]

Dear Jackie,
Just been reading all of your posts from the beginning not realising at first this thread started in 2008. It is an amazing story and I wonder too if anyone else has had a similar experience. My relative is 80 years old which is much older than your mum but he has almost certainly been suffering from clinical depression for a number of years although we were not aware of this fact. After he had his "sudden" breakdown everything in his life fell apart for him and we are certain that his diagnosis of dementia has wrecked his chances of rehabilitation from his depression. In his case I think his mental breakdown brought about or speeded up the onset of dementia - but as I say he is older so who can say? The sad thing for him is that his Consultant is not even interested in the underlying reasons for his severe depression - just dismisses it and says his state of mind is due to dementia. My relative has been written off and is in a home which is virtually an asylum for the unmanageables. We are trying everything we can to get him moved to a smaller and homelier nursing home. My uncle's life when he was physically strong and fit was bad enough because of tragic circumstances and it is terrible to think that he is living out his last days in ever worsening depression with dementia adding to the nightmare. Sorry, Jackie - your post was uplifting but it has made me so sad. If only we had known earlier about his depression and how far back it went before he became ill. My best wishes to you and your mother, you have succeeded in doing a wonderful job.

 

[JPG1]

Jackie,

What an amazing story, and I applaud your efforts on behalf of your Mum. Well done, both of you.

I know very little about the law in Scotland, but surely the care home manager must take on board the fact that your mother was incorrectly deemed incapacitated (to use the c/h manager’s own words) with an incorrect diagnosis of dementia. For me, there’s a vast difference!! In England, the care home records are by law required to be made available to the person who is in the care home, or to their attorney, or to their ‘named’ person. I’ve never heard of them being refused on the basis that someone was incorrectly deemed incapacitated at a certain point. In fact, they are to be available if someone was correctly deemed incapacitated .

The certificate that Jennifer linked to is for medical treatement. Is it the same with ‘care home’ residents in Scotland? I don’t know.

Another thought: the Data Protection Act here grants anyone the right to obtain a copy of anything held about them by any ‘body’ and that includes any public body contracted by the local authority to provide a service. I’d be surprised if there was a clause in there requiring someone to submit themselves to a psychiatric assessment in order to gain access to those records. Same in Scotland, maybe? Might be worth asking the Scottish Information Commissioner.

http://www.itspublicknowledge.info/home/ScottishInformationCommissioner.asp

If the TP software censor needs another word to delete, in addition to the one Jennifer was thinking of, my word to describe the care home manager would be “£$%^^&!_F$(F !!

Good luck, and best wishes to you and your Mum.

 

[jackiegray]

Sleepless
I know my mother’s story really is one of the miracles and I thank my lucky stars everyday that she has got better. I remember in December 2007 collecting her from the airport when she had just been diagnosed with VAD and being handed Xmas cards she had written out for my children. The writing was nearly illegible, I could hardly make out the names or words on the cards it was heartbreaking. My sister told me then to keep these as my mother had lost the ability to write. Well she can write again, not great (but she never was) but she can write sentences and that is brilliant, cause in December 2007 I really did not believe that this would be possible. Thanks for your kind words and never give up hope..

Jennifer
I agree, I really wish I could put in graphic writing how I feel about the care home manager. She was really not happy about my mother leaving the care home but there was nothing she could do about it. Unfortunately for my mother she took my sister’s side and it certainly showed in her treatment and behavior towards me. But my mother got the last laugh!!

Thanks for the info with regards the Office of Public Guardian. I am just a bit concerned as my mother completed the Property and Financial Affairs LPA and Health and the Welfare LPA in April 2009. These have all been signed and lodged with the Office of Public Guardian. The instructions are that she is in full charge of her affairs unless something happens to her. I am worried now due to the 1-3 year incapacity certificate in Scotland that they would deem this invalid. My mother wanted this done so that no one could put her in a care home again. If I make a complaint about the capacity issue to them will they not say that she was incapacitated to sign these forms? This is a legal nightmare and should not be happening to her. I am going to look into this further and really appreciate your links with regards this.

My mother is registered with my GP but is under no psychiatric care. She is on psychiatric medication and has been fine since living with me. She does not feel that she needs any input from other services with regards her mental health care for the time being and as long as she is ok them I am ok with that. My mother’s depression stems back to our childhood and her leaving her five children, basically she has never been able to forgive herself. In her words “her mind is tortured every minute of the day” but as long as she is around me and my family then she is ok.

I will let you know what I find out about the legal side with regards accessing her records. I will not give up… My mother deserves better.

Janics
I have to say that when my mother was first diagnosed with VAD in 2007 she did tick all the boxes, I read everything about it and she did fit the pattern. My question arose when she started to get better, how was this possible and then things just went downhill.

When I researched my mother’s case I came across pseudodementia. I felt that this was what my mother was suffering as she had a long history of mental health issues. I asked her Dr about it and he dismissed it. When I looked at it again there are definitely some Dr’s for and against this diagnosis. I just know from personal experience that this was the case with my mother.

The care home was not used to their residents making an improvement and as far as I am concerned the Dr didn’t care enough. They had made a diagnosis and that was that. My mother was by this time over 65, her care moved into old age Psychiatry, no consideration was given to her psytartic past and she was labeled. Her depression was not being treated and she was getting more depressed in the care home because she didn’t want to be there, but this was taken to be a decline in her mental state due to dementia. It just went on and on. The Dr finally confirmed that she did not have dementia in a letter to me in December 2008 but even then he had to put, “she is suffering from deep clinical depression and does not have Vascular Dementia or Frontal Dementia, at this time”. Saying at this time was an insult to my intelligence, I was never saying that my mother could not get dementia; I just wanted them to admit that she currently did not have it. I know that my mother’s case baffled the medical staff in Scotland but not to listen to her wishes and what she wanted was an insult and it should never have happened.

I wish you all the best with regards you Uncle and I would say just ask questions all the time to the medical staff, they are not god and each patient is an individual, no two cases are the same.

Thanks again for all your comments and I will let you know how I get on.
Jackie

 

[jenniferpa]

We're talking about an English LPA yes? Hmm I'm also not sure how a new english lpa is or could be affected by that old scottish certificate that is floating around. Obviously whoever did the certification for the LPA felt she was sufficiently on the ball. On the other hand, the act does seem to feel that a certificate either expires or is revoked which is why I do feel you need specialist legal help.

Theoretically the fact that you are (or could) complain to the office of the public guardian (scotland) regarding your mother being incorrectly certified as being incapable, should not affect her ability to create an LPA. After all, you would be saying she was in fact capable all the time (or at least for most of the time after they had sorted out her treatment). And of course you have that letter from the doctor saying that she was wrongly diagnosed.

 

[jackiegray]

Jenifer yes it is an english LPA. I will try to get a copy of the capacity certificate and am contacting MIND legal services to try and get some help. I had contacted MIND previously and to be frank they were baffled by my mothers case. I will let you know how I get on and thanks for your help/suggestions.

Jackie

 

[lin1]

Jackie
I have just found this thread.

I am amazed and so pleased that your mum has recovered so well.
That she has you fighting for her is wonderful. Am sorry about the estrangement with your sister, maybe she will come round in time.

I know you have still got a fight on your hands, but this is a wonderful miracle and you are a brilliant advocate for your mum

 

[jackiegray]

Hi just thought I would update again, my mum’s GP has just sent us a copy of the incapacity certificate and yippee it expired on 28/2/09. I am so relieved as there can be no questions with regards the LPA which she completed in April 2009.

It is very interesting to see written on the capacity certificate "Vascular Dementia". The care home manager gave her reason for not giving my mum copies of her medical notes due to her being diagnosed with "dementia". We sent her a copy of the letter from the consultant stating in Dec 08 that she did not have Vascular Dementia but was suffering from deep clinical depression. The care home manager wrote that this letter is out of date and she insists on seeing an up to date medical report. She has quoted the capacity certificate as being valid even although it is out of date but is unwilling to accept a letter from a consultant stating that my mother does not have VAD. I am completely baffled by the care home manager’s attitude to this. We are going to send another letter to her demanding copies of the notes and failing that she will hear from my mother’s solicitor (I will have to get one for her).
Watch this space and do not ever give up xxxx

 

[jenniferpa]

Yippee indeed.

Yes it really is baffling why she is taking this approach. I mean I sort of understood about her unwillingness to lose a self-paying resident (didn't like it and didn't think it was right but..) This though - very very odd.

I imagine it must make you suspicious about what exactly is in those records, although it's just as likely that this is a person who takes everything as an affront to her authority.

Do keep us updated.

 

[marzipan]

Misdiagnosis

Dear Jackie,
I see that your posts were dated 2008 so I hope that you are still in touch with 'Talking Point'.

I just could not believe it when I saw your postings about your Mam. My own Mam would seem to be in a very similar situation and I truly feel her VAD has been misdiagnosed. I have come across a condition called Pseudodementia which is linked to a past psychiatric illness and really feel that is what my Mam has. Her dementia has vastly improved since entering residential care but she is extremely distressed all day long there. If you are still in touch with this site could you please reply to me. I would love to chat with you.

 

[jackiegray]

Hi - yes I still check in from time to time. My mother’s case was very complex as she exhibited all the signs for VAD. It was only when she started to get better that I started questioning her diagnosis as I had been told that she had very rapid progressive VAD. I researched the internet and found the term "pseudodementia". When I asked the dementia specialist about this at first he was a bit dismissive. But I pushed and pushed as my mother’s situation did seem to fit this. My mother has suffered from clinical depression for tens of years and it appeared to me that she had all the VAD symptoms when she reached 65 so she ticked all their boxes.

Finally the consultant did admit in writing that she did not have VAD but this did not mean that in the future she would not develop it!!!!!!! Well not being funny but you could say that about anyone.

Bottom line is my mum is still staying with me and she has gone from strength to strength. We just had a big birthday party on Sat to celebrate her turning 70. She moved in with me over two years ago and too be honest I did not know how things were going to work out. She had lost all her life skills being put in a home. She had become institualized. She could not at the beginning even have a shower on her own!!!!! Her niece came for her birthday at the weekend and she was explain to her that when she first came to stay with me she was trying to clean the kitchen and she just stood and looked at the sink, she had no idea what she was supposed to be doing, she said she just forgot. Well you should see her now, it’s really a miracle. But my god the difference in her now is like night and day. She can do everything and I mean everything for herself. She is even doing all my housework its truly amazing. She is loving life and is fully independent. She still suffers from deep clinical depression and is on medication but since she has been with me she has not spent one day in bed!!! She spent three years in the past in bed, truly amazing.

I have to say I really did have a fight on my hands not only with the medical profession cause they don’t like to be proved wrong but also with my sister. My sister did not want my mum to leave the care home as she believed that this was the place for my mother to live the rest of her life, even although my mum was telling her that she would rather be dead.

So from a medical and well being point of view my mother is great, she has a new lease of life and is loving it... but the personal side has taken its toll on her and her relationship with my sister is not good, my sister has not forgiven her for leaving the care home even although my mum has told my sister that she is doing great.

So it has been a very hard road over the last four years, I have fought my mother’s corner and thankfully for her she has come out the other side.

If you want to talk to me – email me.

I wish you all the best, I have learned that the Doctors are not always right, my mother is living proof!!!
Jackie

 

[jackiegray]

Hi Marzipan

Not sure whether you saw my reply - send me a PM if you want to get in touch. After re reading your posts, I can say that my mother really did have all the symptoms of VAD. She had lost the ability to do anything, even crossing a road. I got my mother’s medical notes going back to 1967 and after going through them I picked up that my mother had a cycle with clinical depression. If something happened in her life then she would deteriorate very quickly and take to her bed, not talk and basically become a vegetable. These cycles could go on for anything between 2 months and 3 years. She was sectioned on numerous occasions for anything up to 6-8 months. I am not a Dr and have no medical experience but just from reading her medical notes I found the cycle.

When they changed my mother’s anti-psychotic drug in 2007 they did not do any checks on her lithium and she ended up being admitted with lithimim toxicity. She had to be taken off all her medication and she deteriorated very rapidly, she did not know the day of the week, the year or anything and kept asking for her mother who died in 1967. All of these facts and that she had reached 65 is the reason the Drs I feel diagnosed her with VAD. She had been under a CPN and Psychiatrist for years but not the Old Age Psychiatry. Due to her being 65 they transferred her over to this section and it was them who made the diagnosis of VAD. In the beginning I did not question it as I had read so much about VAD and she did appear to fit the criteria. I was still questioning about the damage due to the lithium toxicity but this was dismissed as I was told that she had VAD and basically she would never be able to live independently again.

When she started to get better and I queried this, they did not like it, the Old Age Psychiatry Doctor, the Social Workers, the Care Home Manager or most of the staff. One staff member in the care home said to me off the record that the next time I took my mum to London to live with me that I should not bring her back as my mother was not in the right place. She couldn’t get involved due to the complexity of the situation but disagreed with the Drs, the Social Workers, the Care Home Manager and my sister.

It was a very difficult situation but thankfully for my mother it turned out for the best in the end.

Please get in touch with me if you need further information. I do understand that my mother’s case was very unusual but if I had not fought my mother’s corner then she would have been labeled as VAD for the rest of her life and she would never have been able to get the proper help that she needed. She would have become a vegetable in the care home as she had stopped getting out of her bed, refusing to wash or eat, all because she did not want to be there.

It breaks my heart when I think of how many times she told the staff that she did not want to be there, that she was getting better, even then she understood that she would need help to live independently again. She told the social workers, the Dr’s, the care home staff and anyone else who would listen. Unfortunately for her she was dismissed. I remember the care home manager saying to me “do you know how many of my residents tell us every day that they want to go home”, because of her having the label of VAD, they dismissed and took no notice of what she was saying, but I did not!!!!
Jackie