HELP - Problems with doctors

[WittsEnd]

The last two years have been horrific for me. My husband has strictly forbidden the doctors from having any contact with me regarding his health issues and results of the neuropsych testing. His GP and I do not get along. He is currently under a neurologist.

My husband can be extremely believable and he has convinced everyone that he is "considering divorce." What do I have to do in order to get the medical profession to speak to me. I need help and support in order to cope with this madman who is in constant denial that anything is wrong with him.

He has gone so crazy he even had an offer to purchase another property accepted. All this was done in the week he left home without telling me where he was going. I really need help. Lawyers don't want to help me only interested in handling a divorce. He left me with £50 for the week he was gone and is a total control freak. The money was to purchase groceries, pay parking, buy cat & dog food etc.

 

[jenniferpa]

Welcome to Talking Point WittsEnd (and that sounds a fairly appropriate user name).

I know one or two of our members have dealt/are dealing with a situation like this, but even knowing you have company is unlikely to help you at this time.

I suspect that what I'm going to say may sound naive, but can you express why you need to get the medical professional to listen to you? That is: what are you hoping to achieve with this? Perhaps then we might be able to make some suggestions.

I suppose that what I am saying is that if you really cannot live with him like this, even if the reason is an organic brain illness such as dementia, then you cannot live with him like this, and you need to work out some kind of exit plan. If the negatives of doing so are worse than living with the situation as it exists, then you have to recognise that as well.

We all have different points at which we say "no more". For me, it would be physical violence, but for others it might be less (or more).

I'm not sure than anyone is going to be able to give you a method to 1) get him to accept he has a problem and 2) get his doctors to talk to you. There is no reason why you shouldn't talk to his doctors though, even if they don't respond. On that basis I would advise keeping a diary that documents the abnormal behaviour that you are seeing and then forwarding it to his GP.

I am so sorry you find yourself in this situation. It must be heartbreaking to want to help but to be rejected in this way. Sadly, dementia can make people irrational.

 

[WittsEnd]

Jennifer,

Thank you for the welcome.
Here in the U.K. a Social Worker needs to be assigned to us as well as a cpn (community psyc nurse) and various forms completed for submission etc. Without the doctors telling me what is wrong, how can I adequately take care of my husband? My husband says he is perfectly fine. I say he needs meds for his hostility towards me and his obsessive behaviours and paranoia.

How can a dementia patient survive without the well spouse knowing what is wrong and caring properly for them without any support? I cant leave him, he is a control freak and I am penniless without him. He has tried many times to throw me out of the home.

 

[jenniferpa]

The reality is that meds can go only so far. If he (and his medical advisers) will not accept that he issues or will not accept your input about those issues, then you may not be able to to do anything. In the UK, you are presumed to have capacity until such point as you are deemed not to. This obviously makes it extremely difficult when it comes to dementia.

If you have been his spouse for many years then dementia or not, he has some legal responsibility to support you. He may not understand that and he many not be willing to do that, but that is what the courts are for. I quite understand that you care for him and you may not wish to take these steps but they do exist.

I suspect that you feel that you have no options and I would strongly suggest you call the help line http://www.alzheimers.org.uk/helpline to get specific information.

Incidentally - my only real experience of dementia is UK based - I may be in the US but I was born (and my mother was resident) in the UK.

P.S. Many of us had/have no contact with social services or a CPN so it's definitely not a requirement.

 

[piedwarbler]

I don't know if your local Alzheimer's adviser could help you mediate with his GP.
My mum had the misfortune of being under a GP who believed her every word and she could confabulate beautifully that it was me who was the problem.
I am sorry you are in such a bad place x

 

[Tender Face]

Wittsend, there is something screaming at me here ... you mention more than once ‘control freak’. Was your husband always like that? Or is it just the result of whatever disease he now has? You know, some of us fall in love with these types and would still walk over hot coals for them in absolute devotion whatever they throw at us, dementia or not (although I agree with Jennifer – physical violence would be my personal limit) and it is nothing to do with money, or financial dependence on them ... just love, however misguided other people may think the situation is and that we should walk away from it.

Just wondering ..... a completely different tack – like a Women’s Group or Women’s Centre locally may help YOU work through your feelings and frustrations and worries and gain some clarity about what you are trying to achieve here and what your own options are, whether you are resolute in caring or indeed, need to walk away?

You say you don’t get along with your husband’s GP – but what about your own? My first thought is you need to go and chat about yourself and the emotional strain you are under ...... and see where that leads .....

My very best wishes, Karen, x

 

[WittsEnd]

Thank you Jennifer and Karen,

I suspect they were investigating Pick's Disease/FTD (Frontotemporal Dementia) because my husband's memory was second to none, even better than mine and he did well on the MMSE test.

I only know from stealthily going through his things that memory glitches were picked up. FTD presents with extreme behaviour symptoms or language symptoms. My husband has the hostile behaviour symptoms which are all directed at me. He has isolated us from most people and painted me as the witch from hell, whereas before, he was sweet and loving.

Jennifer, so you fully understand about the mental capacity problems we have over here. My husband has to be absolutely Doo Lally before they acknowledge he has lost it. I will contact the Alzheimer's Society.

Many Thanks.

 

[Jancis]

Hi WittsEnd,
I was just reading Logan's thread and saw your post and then found this thread. Welcome to TP from me too.

Just wanted to say how much I sympathise with you regarding your husband's illness. My uncle has a possible diagnosis of frontal lobe dementia and I think this illness is often misunderstood - even by psychiatrists and psychologists. The problem is they only get to know the person after the illness is manifested. The psych who was assigned to my uncle thought that his new personality was how he really was.

But although my uncle was adamant that the medics and social services should not share any information about his health with his family we did manage to get basic information. Well my mother did as his next of kin. We had to fight for my uncle's rights as he wasn't receiving the right level of care and was virtually written off. His illness was severely complicated by depression and he went down hill very fast.

When I tell people who don't know my uncle about his story they cannot believe it and I suspect they wonder if there was an element of 'six of one and half a dozen of the other'.

Does you husband have any friends from the past you could contact to discuss his condition. I found my uncle's old friends very supportive - in fact, apart from us they were the only ones who understood how he had changed.

I hope the Alzheimer's Society can help, let us know how you get on.

Best wishes,
Jancis

 

[WittsEnd]

Hi WittsEnd,
I was just reading Logan's thread and saw your post and then found this thread. Welcome to TP from me too.

Just wanted to say how much I sympathise with you regarding your husband's illness. My uncle has a possible diagnosis of frontal lobe dementia and I think this illness is often misunderstood - even by psychiatrists and psychologists. The problem is they only get to know the person after the illness is manifested. The psych who was assigned to my uncle thought that his new personality was how he really was.

But although my uncle was adamant that the medics and social services should not share any information about his health with his family we did manage to get basic information. Well my mother did as his next of kin. We had to fight for my uncle's rights as he wasn't receiving the right level of care and was virtually written off. His illness was severely complicated by depression and he went down hill very fast.

When I tell people who don't know my uncle about his story they cannot believe it and I suspect they wonder if there was an element of 'six of one and half a dozen of the other'.

Does you husband have any friends from the past you could contact to discuss his condition. I found my uncle's old friends very supportive - in fact, apart from us they were the only ones who understood how he had changed.

I hope the Alzheimer's Society can help, let us know how you get on.

Best wishes,
Jancis

Jancis, thank you very much for taking the time to reply.
I found NHS letters requesting my husband to have brain scans which he preferred to ignore. You give me hope that someone will have to speak to me in the end in order to arrange proper care and support for both him and myself.

Heaven forbid that my husband should suddenly lose capacity. He controls all finances and bank accounts, so I am wondering where that would leave me. If I need petrol for the car I have to take him along in order to pay. I have to beg for parking money. When we do our weekly shop he must come along because I am too wasteful in his eyes. Only the basic and very cheapest brands are acceptable to him. Oh My God what am I to do?

I was thinking about the friends suggestion you made. Bearing in mind that he has alienated everyone from me, it would be quite difficult for me to do this. There is one couple who live about three hours drive away from us and he seems to be on good terms with them, perhaps I could give the wife a call to try to convince my husband to go for the scans which are needed. Hopefully she will understand because her husband had a brain tumour removed some years ago.

 

[tre]

You are in such a difficult situation " between a rock and a hard place". My mum was in complete denial regarding her dementia too and was accusing my dad of all sorts of stuff. They were living in Devon at the time 250 miles away from my brother and I. it was quite obvious that mum had mental issues and she quite quickly lost nearly all her language ( except to say no to everything and insist there was nothing wrong with her). My brother wrote a long letter to the GP as dad had health problems too, so mum used to attend the surgery with him, asking if anything could be done by gentle persuasion but he did not even get a reply. Eventually we persuaded them to move back closer to us ( each thinking they were supporting the others health issues) and then I did get mum to the GP by saying she needed to go in order to get registered.
The thing that really was getting to me when she would not go was that there was possibly some treatment/ medication that might have helped and she was missing out on it.
You obviously still love your husband and know it is not him but his illness which is making it so difficult but how do you reason with someone in that situation. Do you have any family who might help or are they all taken in by his lies?
Tre

 

[Necion]

Without the doctors telling me what is wrong, how can I adequately take care of my husband? My husband says he is perfectly fine.

How can a dementia patient survive without the well spouse knowing what is wrong and caring properly for them without any support? I cant leave him, He has tried many times to throw me out of the home.

Hi WittsEnd, and welcome to TP from me also.
A lot of what you have described could be from our story too, so I totally understand how you took the name of WittsEnd. I suspect you are beyond desparation, and feel completely trapped with nowhere to turn?

As has been suggested, please contact Alzheimers Society, but not only your local branch, you need legal advice here too. Your husband's 'unreasonable behaviour' - and/or physical and mental abuse towards you - cannot be ignored.
We know doctors have to operate within patient confidentiality, but they are also bound to act in their patient's best interests.
Without your husband's co-operation and permission, they are limited to what they can do, but if there is a risk that your husband could be a danger to himself or to you, this takes a different road.

Your husband says he's perfectly fine, so you are quite justified in expecting 'normal' behaviour, and not to be thrown out of your home!!!
At the risk of encountering the wrath of the forum here, I'm going to say do not hesitate to involve the police if need be. You have a right to not be mistreated, or evicted from your home, and police should not turn their backs on 'a domestic.'

This may sound horrific to you, but you need to have power to your elbow, you may need to be cruel to be kind. Indeed if there is such a diagnosis, FTD, Pick's or whatever, your husband is a vulnerable person and as such, doctors may well welcome the decision to involve you, being taken out of their hands. They cannot go against your husband's wishes without very very good reason!

I agree with the previous poster that YOU need to discuss this with your own GP in relation to your own health & safety. Whatever reaction you get, please, please, please.....Do Not Give Up!
"KICK & SCREAM UNTIL SOMEONE HEARS YOU" (www.pdsg.org.uk - caregivers stories - Ginty Fay)

I have been very lucky in that my John did eventually realise that there was 'something wrong' and has never been violent or verbally abusive beyond sarcasm. Perthaps your hb is just plain scared & confused. If this is FTD, it is likely that his reasoning to figure out that it's better to involve you is just not working.
I find that even simple decisions, common sense things we take for granted, just does not happen, cannot happen, as 'reasoning & judgement' is way off functional.
Making the decision to tell doctors he is happy for you to be involved is a major thing, lack of ability to make simple decisions is part of the illness, although many experienced doctors just don't realise this.


Sending wishes of comfort, strength & wisdom...don't give up!
Lots of love, Necion. xxxx

 

[cragmaid]

Hi Wittsend, No wonder you've chosen that name!. There are several issues here, only some of which actually refer to your husband's illness and a lot of them refer to his mistreatment of you. You make no mention of children, so I'm guessing that there is no immediate family or even siblings to assist you, even just providing a shoulder to cry on. I gather he's always been a control freak and for whatever reason you have gone along with that, I do know that an easier life sometimes has to be earned the hard way. Again I have seen no mention of age or working status, but if you are of pension age you will be able to have any pension you are entitled to paid directly to you and not into a joint account. Again, this is assuming that you have a joint account, then you are entitled to take out money whenever you need to, you should not be oblidged to beg for every penny.
It sounds to me the this man is and has been a bully for a long time. How much of this can be related to his illness is anyone's guess.
With regard to you being notified about his illness....well unless he is deemed to have not the capacity to make judgements, he does not have to let you or indeed anyone become party to his notes. You are allowed to put down in writing your worries, feelings and descriptions of his actions and send it to his GP, even thought the GP is not allowed to reply to you.
You must seek legal advice, contact the Citizen's Advice people and they will put you in touch with Women's advice groups. Keep safe and look after yourself. If you ever have serious cause to fear for your safety phone 999 and ask for the Police.

 

[WittsEnd]

Hi Wittsend, No wonder you've chosen that name!. There are several issues here, only some of which actually refer to your husband's illness and a lot of them refer to his mistreatment of you. You make no mention of children, so I'm guessing that there is no immediate family or even siblings to assist you, even just providing a shoulder to cry on. I gather he's always been a control freak and for whatever reason you have gone along with that, I do know that an easier life sometimes has to be earned the hard way. Again I have seen no mention of age or working status, but if you are of pension age you will be able to have any pension you are entitled to paid directly to you and not into a joint account. Again, this is assuming that you have a joint account, then you are entitled to take out money whenever you need to, you should not be oblidged to beg for every penny.
It sounds to me the this man is and has been a bully for a long time. How much of this can be related to his illness is anyone's guess.
With regard to you being notified about his illness....well unless he is deemed to have not the capacity to make judgements, he does not have to let you or indeed anyone become party to his notes. You are allowed to put down in writing your worries, feelings and descriptions of his actions and send it to his GP, even thought the GP is not allowed to reply to you.
You must seek legal advice, contact the Citizen's Advice people and they will put you in touch with Women's advice groups. Keep safe and look after yourself. If you ever have serious cause to fear for your safety phone 999 and ask for the Police.

Thank you Maureen,

My husband was such a sweetie ........ until he got ill, now he's a nightmare to live with. I am not of pensionable age only being 51 years old and hubby is 12 years older and was put on early pension by his employers due to mistakes at work about eight years ago. He has no siblings, being an only child and no living relatives. I have one son of 28 from a previous relationship long ago who keeps telling me to leave, so he does not understand this illness at all.

Over two years ago, my hubby really lost it and banned any contact with my son. They were so close that I could not believe what had happened. Which is why Mathew no longer has any time for hubby. Yes he has turned into a bully, but I realise that he is ill and needs treatment.

I will visit the Citizen's Advice Bureau as you have advised. It is so sad having no one to turn to and over Christmas, its always just the two of us. No joy in our lives, and he is happy as Larry this way.

 

[WittsEnd]

Necion,

Thank you for your time and trouble in replying to me.
I had to involve the police in order to gain entry into my home as hubby had locked me out for a week. I felt terribly intimidated because the young police officer asked me who owned the house and I had to say that everything was in my husband's name. He came around to the house with me and we got hubby to open up, but I had to beg to be let back into my home again. All the time I was crying and telling the officer that it is our marital home where I live and I had nowhere to go.

The officer asked my husband to have me back in order to try again and make things work. Very grudgingly he agreed, but he was just so hostile towards me. All this time he expects normal husband and wife relationship or he will just help himself. He does not realise that this is wrong.

 

[scatterbrain]

Keep yourself safe

Oh, Wittsend - my heart is breaking for you. I wish I could help. The only thing that occurs to me is to wonder if your doctor could talk to your husband's doctor? You could give him permission to share your information (as far is it is relevant) and as fellow professionals they may perhaps be able to achieve something that way.

I would also like to endorse what Cragmaid said in a previous post: if you are in danger you must act to protect yourself. This is for his sake as well as for yours. Your husband is not himself: you need to prevent him, as far as you can, from doing anything terrible because he cannot do that for himself right now. Don't forget, though, that like all of us you are only human. There is a limit to what we can achieve, however much we want to do better.

Remember the sweetie you married - and don't let him destroy the woman he married! Good luck.

 

[Meercat]

Most importantly - keep yourself safe and well.
*See your own GP, firstly to talk to him/her about you then discuss your husband - your GP may have recommendations of a plan of action.

*Definetely pursue this friend even if they don't wish to engage with your H about his condition you MUST talk about it to people who know him

*Log all of his behaviours and contrasting behaviours before he came ill and e-mail it to his GP - it shouldn't matter that you don't get on with his GP - he/she is a professional and should take the information on board

*YOU are at risk and therefore even though your H currently won't access social worker support - you can - share all the behaviours you have observed before and after his illness - if they don't take you as a case they should atleast signpost you to support/support groups

*At any point that your H is doing something that is harmful' to you in any way you log it with the police and social services and your and his GP - this way they will eventually build a full picture of his behaviours/condition and hopefully sooner than later will give the help your H needs

Please, please take care of yourself - you need to look after yourself so you can help your H