Dad in denial but needs help

[Alex C]

I really need some advice.

My dad's memory has been very bad for a number of years and we suspected something was wrong but he never agreed that he has problems.

We have never been close and after my mum died 15 years ago I'd only see him every few months. Then my work took me abroad so I'd see him even less.

When I saw him about a year and a half ago he was extremely forgetful and confused. He knew who I was but kept asking me how I got into his house. I telephoned his doctor and I was told that they would only get involved if my father booked an appointment. I suggested this to my dad but he got very cross.

I had to go away with work again and made a point of calling him more often and it was obvious to me that he wasn;t right but he got cross every time I suggested going to see the doctor. I got back in January and found him very, very forgetful and very confused. His house was very dirty and most of the food he had in was rotten. I took him shopping and he asked where we were going every 5 minutes. There were times he didn't know who I was. At other times he thought I was his dead brother. All in all there is really no question that he hs some form of dementia and can't manange his life very well. I found a pile of unpaid bills and court fines for example, I sorted all that out and paid up because when I tried to talk to him about it he either didn't seem to understand or would get agitated that people were sending him those bils to get at him. He also thinks people have bugged his house.

I insisted that he went to see a doctor with me for a check up and he actually agreed. I took him because he is not capable of remembering an appointment. My dad told my doctor that he was fine but failed the memory test completely. He got refered to the memory clinic. I took him again and he was quite sharp on that day. He couldn't remember being married to my mum or how she died or when and there were alot of other things like that but he did get 23 out of 30 on the test they did, which wasn't too bad the doctor said. He did much better on that day than he would normally do!

Things started to go wrong after the appointment. He kept saying how there is nothing wrong with him and getting cross. Then, out of the blue, he said that I stole his car and he wanted nothing to do with me and he would get the police on me. I tried explaining tht his car was in the garage and he went to check. The story changed and became me trying to steal the car and the police catching me and giving the car back to my dad. It keeps changing but as far as he is concerned I am no longer his son. He will sometimes accept a call from my wife but they're not close and he often doesn't recognise her and talks to her as if she was a stranger.

My problem now is that the doctors are telling me they can't do anything because he is not at immediate risk to himself. He is refusing all help that has been offered and will not see the nurse or the woman from the social sevices.

He has no family apart from me and no friends. His house is detached and there are no near neighbours, and even then he has been very argumentative with them so I can't see them going out of their way to help him even if they knew he needed help. I knocked on one door up the road to give them my number in case they saw something worrying but the want nothing to do with him.

He is not a nice person and being ill has made him worse but he is my dad and I feel I have a duty to him. But what can I do? Does anyone have ny suggestions? I hoped tht he would forget the car business and would want to see me but it's one of the few things he does remember and keeps reacting to me with rage. The doctors are doing nothing.

What is likely to happen next? If I leave him to it he will get into some kind of trouble for sure. He can't manage his finances and he's not eating properly. Also he was very confused about where he was when we went out even though we were only minutes from his house so he's either getting lost already or it won't be long until he does.

Sorry about the length of my story.

 

[DeborahBlythe]

Hello Alex C, welcome to Talking Point. I'm really sorry to read about your father. It must be intensely worrying especially if he is in denial. As you rightly say, he may well get into more than a pickle if something isn't done.

I think the time has come to get onto Social Services and stress that your father is vulnerable and at risk now, and to ask for their urgent involvement. You say the doctors say he is 'at no risk to himself', but that sounds a bit too hopeful to me. I think the Social Services would probably take a different view especially if you made it very plain what your concerns were.

One thing to do would be to ask for a Community Care Assessment for your father and to ask to be advised when it would take place so that you could be there to assist. (See the following link.)

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

I'm afraid you may need to spend quite a bit more time getting the right care in place for your father and you may need to start thinking about local care homes.
Tomorrow it will be possible to talk to the advisers on the Alzheimers Society helpline, so you may want to contact them too for further support. http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200365

I'm sure others on Talking Point will add their thoughts in the meantime. Kind regards

 

[ellejay]

Hi Alex. What an awful time you are having.

I think I'd get back in touch with Social Services and tell them how bad it is (Don't hold back, tell it like it is on the worse days.
I would think they will get things moving, hope so anyway.


Good Luck, Lin x

 

[Alex C]

Thank you Deborah.

A woman from the Social Services went to see my dad about 3 weeks ago and said that he asked her to leave after telling her that he dosn't need any help. I've spoken to them to explain that he really isn't managing very well but they said that he has to agree to their help so there is nothing more that they can do. I've talked to the Alzheimer's society and they were very understanding but all they are able to offer is an ear.

It is worrying that for short periods of time my dad can appear OK in a superficial way. He is ex army, well spoken and quite forceful. I suspect noone apart from me has seen how really ill and at risk he is.

I follwed up my conversation with an email to restate my worries but I haven't heard anything back.

 

[Alex C]

Hi Alex. What an awful time you are having.

I think I'd get back in touch with Social Services and tell them how bad it is (Don't hold back, tell it like it is on the worse days.
I would think they will get things moving, hope so anyway.


Good Luck, Lin x

Thank you.

I thought they would help out too but it doesn't seem to be the case.

I'm due to go abroad again in a few weeks and it doesn't seem right to leave him like this but it seems that noone is in a position to help or maybe they don't believe me how bad he is.

 

[ellejay]

Hi again,
It seems you and your Dad are being badly let down. For now you've done all you can.

Try not to worry too much (easy said I know!).Sometimes we just have to wait and see.

Lin x

 

[Canadian Joanne]

Hello Alex,

Don't apologize for the length of your post because a) you need to get it out and b) having details about what's been going on will help people in sharing their experiences and advice.

Because I'm not in the UK, I can't give the practical advice you'll get from others but I'm assuming from what you've said that you do not have power of attorney. I think you could apply for guardianship but I believe you would have to have a diagnosis for that. If you could get your father to sign a POA, that would be great but it doesn't sound like he has the mental capacity to sign, regardless of the fact you haven't been able to get a formal diagnosis.

It is very common for people with dementia to turn on their close relatives who care for them. I realize this won't make you feel any better, but you are definitely not alone in this. Also, he will eventually forget the car but this will probably take months. I would suggest that you have the car disabled in some way, just in case he decides to take it out.

Unfortunately, you're probably right in assuming that nothing much can be put in place for your father until something happens. Having someone go there every day simply to see if he'll respond will at least tell you if he's okay.

I'm sure others will have much better advice for you.

 

[DeborahBlythe]

Thank you Deborah.

I follwed up my conversation with an email to restate my worries but I haven't heard anything back.

Hello, it's good that you emailed them but with all the Bank Holidays around, I fear that your email may have got lost in the ether. I think I'd give them 24 hours from tomorrow morning and then pursue an answer either by email or phone. I don't think you will have any peace of mind until someone takes you seriously.

 

[Alex C]

Having power of attorney would be great but he is not going to agree to me having it and I think you're right that he no longer has capacity to understand something like that.

The car is a worry but I would literally have to break in to disable it as he won't let me onto his property. Obviously I can't do that.

 

[Bumble B]

Hi Alex,this is an awful situation for you and you must be very worried.
I have a similar situation with my Dad,though not so bad. Mum's in a home and his whole life revolves around his visits to her,resulting in neglecting to take care of himself to such an extent that to me he seems practically at death's door.
I've been banging my head against a brick wall with social services.If I eventually do manage to get someone to answer a phone call I tell them my concerns,they ring to make an appointment to see him,he tells them he's perfectly OK and doesn't need any help,and that's the end of that.
Finally last week I managed to get one to understand that he really isn't being truthful when he says he can manage alone.She promised to take it further and ring me back,but she hasn't yet.
The only thing that I can suggest is that you try to find out the name of the head of the social workers'office that would deal with your father and write them a letter spelling out every detail of your concerns,then keep pushing for a reply.
It's even more difficult for you,being out of the country,and like me,the only child to do everything.
Good luck and try not to worry.

 

[Alex C]

Hello, it's good that you emailed them but with all the Bank Holidays around, I fear that your email may have got lost in the ether. I think I'd give them 24 hours from tomorrow morning and then pursue an answer either by email or phone. I don't think you will have any peace of mind until someone takes you seriously.

I emailed about 3 weeks ago.

Do you think it's worth trying again? They were quite convinced that they offered to help but he flat refused so they had to leave. I've already explained what I've observed and why I'm so worried but all I'm hearing back is that nothing can happen without his consent.

I can't believe that there isn't a system to cope with people like him.

 

[Alex C]

Hi Alex,this is an awful situation for you and you must be very worried.
I have a similar situation with my Dad,though not so bad. Mum's in a home and his whole life revolves around his visits to her,resulting in neglecting to take care of himself to such an extent that to me he seems practically at death's door.
I've been banging my head against a brick wall with social services.If I eventually do manage to get someone to answer a phone call I tell them my concerns,they ring to make an appointment to see him,he tells them he's perfectly OK and doesn't need any help,and that's the end of that.
Finally last week I managed to get one to understand that he really isn't being truthful when he says he can manage alone.She promised to take it further and ring me back,but she hasn't yet.
The only thing that I can suggest is that you try to find out the name of the head of the social workers'office that would deal with your father and write them a letter spelling out every detail of your concerns,then keep pushing for a reply.
It's even more difficult for you,being out of the country,and like me,the only child to do everything.
Good luck and try not to worry.

Thank you. I'll do what you suggest.

Good luck to you too.

 

[thatwoman]

Oh dear, Alex,
your Dad sounds very like my Dad was: the unpaid bills, turning on people, the paranoia, and the reasonable score on the memory test. My daughter is a GP,and she says that people with VaD, who have a good standard of education can often do quite well on the memory test, even though they can't manage the everyday living things.
I think you should get back to social services and explain that you will be out of the country, and that your father is a "Vulnerable adult" who is not eating properly. It may help to ask whoever you speak to to tell you the name of their line manager, and copy all your correspondence to them too. It sounds terrible, but sometimes you need to make them see that if anything were to happen to your Dad, that it will be their names in the local paper when there is an enquiry. (Yes, I know that makes me a bad person, but sometimes needs must.)
It is really hard when they won't accept help. I had the luxury of living nearby, so just withdrawing to a safe distance when Dad got angry, then returning with a hot meal which I left on a tray in front of him without comment. Mostly he would eat if I didn't ask him, but if I asked what he wanted I would have things thrown at me. It was like walking on eggshells. Eventually he got pneumonia and had a stroke, so was admitted to hospital without argument, and from there, there was no question that he was safe to go home. He's a much nicer person now he is no longer scared.
Let us know how you get on. I'd definitely ring social services again tomorrow.
Love Sue

 

[sbrew]

Just to add my support and send you a warm hug, you are dealing with such a cruel illness - just remember it is the illness - not your Dad anymore -don't take it personally, you have done so much and doing everything you can, you should be comforted with that knowledge, other then that - the advices given above are worth following, be strong, with lots of love, Sharon.

 

[Alex C]

Thank you Sue and Sharon.

I really appreciate all of you taking the time to respond. Bless you all.

 

[Sue J]

'Do you think it's worth trying again? They were quite convinced that they offered to help but he flat refused so they had to leave. I've already explained what I've observed and why I'm so worried but all I'm hearing back is that nothing can happen without his consent.

I can't believe that there isn't a system to cope with people like him. '


Hi Alex

Sorry you've got all this to deal with - I agree it's crazy there isn't a system - he is an old person, this illness means he is going to refuse - so we all give up? No - definately try again and keep trying, it sounds as if he is not in a position to consent but you're the only one that recognizes that and they're not listening to you. Do not give up.

Could you contact a good care agency that deals with mental health problems and see if you could perhaps get a good carer, that is prepared to be turned away - but will still go back to go around daily offering help under some guise that they have to go and check on elderly people every day as part of their job, and they're not allowed to miss anyone out. Maybe they could take a meal and say they've got to make sure people get them. He may continue to refuse but if he has no food in he may just accept at some point. There are ways and means and I'm really sorry that SS aren't even recognizing your need for support let alone your Dad's - you could always ask them for a carer's assessment for you - they can't refuse.

Rather elaborate suggestions but just hoping you get somewhere - but no don't give up.

Take care
Sue J

 

[bunnies]

Hello Alex - I do sympathise. I'm sure a number of us here have been in a similar situation at some stage. I even experienced a similar thing with the car story - my aunt had a story about that which bore no resemblance to any kind of truth, and she stuck to it for ages during a period when none of us were reeiving any kind of support or help.

Personally, I found social services no help, and ultimately more of a hindrance, although as you are going away I think if they knew there would be noone at all checking on your father that should strengthen your case. They always insist, though, they they can't do anything without the person's consent, and if your father is like my aunt was he definitely will not give that.

You describe your father seeing a doctor - was that a psychiatrist? If your Dad was referred to the mental health team - that would be the psychiatrist - then even if he did 'well' on the memory test, then he should be 'under their care'. If that is the case, I would ring and ask if you could speak with a Community Psychiatric Nurse. I found these to be useful, though they were not able to visit very often. They were able to give me good advice at least. The psychiatrist also washed his hands of my aunt's case after diagnosis. The GP was more helpful though - sometimes people respect a doctor more than someone else. Does your father still take the car out? If he does it is obviously a risk. The doctor your father saw obviously gave your father the impression that there is little wrong with him. If the GP or CPN knows what has been going on they may be willing to take a different approach with him. It sounds to me like he needs to be persuaded to agree to have someone coming to visit him while you are away, whoever that may be - social worker, CPN or GP.

It is very hard to manage this situation, and I am sure you are doing the best you can.

 

[russellgww]

HI Alex, and sorry to read of your problems which are similar to ours, although at least in the case of my father in law the paranoia is (for now) directed at others and not us. I am fairly new to this so my comments are far from an expert view, but rather my own distillation of the legal/care dilemma from trying to resolve our own problems.

Social services are forever trying to get a quart out of a pint pot and so it is not surprising that even if they want to help, their hands are tied unless there is a compelling need to intervene. The protections and provisions of the Mental Health Act anyway mean that things have to get really bad before they can do anything without your father's agreement. It shouldn't make a difference, but if your father's financial affairs are such that any care he received was chargeable then it may make intervention easier.

I sometimes compare it to watching a drunk driver getting into a car and being told you have to wait for him to crash before you can intervene, and just hope the crash isn't fatal. My wife's father has already burned several pans in the kitchen due to forgetting about them and actually started a fire with one, but because he dealt with it himself (this time) he is deemed to be capable of managing by himself. We have had assessments by mental health professionals and by an occupational health adviser but they are far from accurate or thorough.

I am coming to the view that we (and you?) need to make our own written assessment and outline the risks and then present it to a senior care worker in writing. If the event being warned about then subsequently occurs then it could be argued they were negligent - although this is not about trying to apportion blame. Sadly it seems likely that if there is the risk of a negligence claim then preventative action may be more forthcoming if this is pointed out beforehand.

Be careful what you wish for, however. We have not taken this step yet because we don't have PoA for health and welfare and are still hopeful of getting this in place before it is too late (which it sounds as though it is in your case, I am afraid). Without this there seems to me to be a risk that decisions will be taken away from your father, which is a good thing under the circumstances, but into the hands of faceless individuals who may not know know him and his needs as well as you do.

Like I said, this is not an expert view and if I am wrong in any of this I hope others will point out any errors or misconceptions, which will hopefully help me as well as you.

As one friend has recently said to us, whether you take action or don't take action, you will probably regret it one day! That isn't meant to be as bleak as it sounds and is intended as a comfort - we can only do our best and no more.

Good luck - Russell

 

[Logan]

This is just a thought which has flashed through my mind. Is there anyone your father knew in years gone by and who he has not been in touch with? Someone who he liked and got on well with? I am just wondering - would your father believe a "person from the past". Now, I know only too well that people do not always want to be involved. Just thinking that if such a person within your own circles could be found who could speak with your father -as he did in the past - would your father take more to what that person was saying. Long shot, but I thought I would write anyway. Lx

 

[Alex C]

Thank you Russell. You've made some valid points. I'm very concerned that without power of attorney my father's care might be decided by strangers. Does anyone have any more information about how these things work? I assumed that when he got bad enough my wife and I would step back in and make sure he got the right kind of care, even if we had to pay. Would the social services prevent us from doing that? I called them yesterday but there was noone I could speak to and so I'm expecting a call back.

Thank you too for your response Logan. Unfortunately my father has never made friends. Throughout his life he has felt that people basically don't measure up to his standards so friendships never really got going, and there's no family left.