Advice on how to deal with denial

burfordthecat

Registered User
Jan 9, 2008
1,707
0
Leicestershire
Hi

I have recently become a member. My father is in his mid eighties and showing more and more signs of AD. I finally managed to get him to visit the doctor with me, this week and he denied to the doctor that he had any memory problems and refused to agree to a referal for an assessment.

Has anyone been in this situation where you know there is a memory problem but it is being totally denied. Do you have any ideas on how I can make him agree to an assessment as a diagnosis will "unlock" a lot more help.

Thank you

Burfordthecat
 

burfordthecat

Registered User
Jan 9, 2008
1,707
0
Leicestershire
Hello again

Just thought that I would give some more background information, My dad lives on his own and has done since my mother died 19 years ago. He is a very proud, independant man and does not like "other people poking their noses into his business!"

I have been aware for the past 18 months that something was not quite right. Things have now really taken a turn for the worse. I have POA for him and have been looking after his financial affairs for the past 3 years (because it was all getting too much for him to manage on his own). September this year I had to take control of his daily medication (as recommended by the doctor) because he was in a total mess with it.

Things have now become really difficult. I have to ring to remind him to take his tablets, ring to tell him about appointments (often I need to make numerous phone calls to ensure he is setting off at the right time and knows where to go). He is even starting to forget how to do simple tasks such as make a cup of tea. He will ask the same question over and over again during the same phone call.

I have a young family, a 2 year old and a 7 year old and I live 1 hours drive away from my dad. Last week I had to make 4 visits to help out with problems. This usually ment that I would have to drive over after the children were in bed and not getting back home till after midnight. I already feel very tired but there is no other family member who can help. It is me or no-one.

My dad also still drives. A real concern but where he lives there is no public transport. I have aksed dad to move closer to us, but he has said that he is perfectly OK and never intends to leave his own house(which only has open fires for heating!)

He is also forgetting how to eat a balanced meal. The GP has referred him to SS with regard to Meals on Wheels and the assessment is happening next Wednedsay - dad permitting!

Just dread the next phone call as I never know what emergency is waiting for me.

Sorry that this is such a long posting but felt I needed to give some more background information.

Has anyone been in a similar situation?

Thank you

Burfordthecat
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,455
0
Kent
Hello burfordthecat, welcome to TP.

You ask if anyone has been in a similar situation as you, the answer is Yes.

There is so much denial of possible AD, either because of fear or because of the workings of an irrational mind. I can only suggest you keep a diary of your father`s behaviours and take it to his GP yourself.

This will not force your father to accept outside help he thinks he doesn`t need. I`m afraid nothing can make him accept it. But if you withdraw some of your help, cruel though it may be, he might just realize his vulnerability and accept carers visiting his home.
 

clarethebear

Registered User
Oct 16, 2007
197
0
manchester, uk
Hi Burfodthecat

Welcome to TP.

My family situation was different from yours, but I felt I just wanted to welcome you to TP. I'm sure more people will be along soon who will be able to help you and give you some advice.

Take care
Clare
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hi Burfordthe cat, welcome to TP.

Yes. I'm afraid what you describe is not unusual. It must be such a worrying situation for you, your father lives alone, and sounds very vulnerable. It's also worrying that he is still driving. Could you immobilise the car in some way, or take it away for service and find a lot wrong with it? Perhaps even notify DVLA that he should not be driving?

It sounds very harsh, but if he is as absent-minded as that, he could kill someone. The loss of his car might help him realise that he needs help.

Sadly, until he himself admits that, there's not a lot you can do. Social Services will not put any support in place unless the person agrees.

Not much help, I'm afraid, but lots of sympathy.
 

Nebiroth

Registered User
Aug 20, 2006
3,510
0
Yes. Denial is very common. There are two causes: first, because someone with dementia has little to no insight into their condition. They genuinely believe that there is nothing wrong with them - they are perfectly "normal". This is aggravated by the dementia - how do you get someone to accept they are forgetting things when they can't remember anything?

My father thinks there is nothing wrong with him. He will ask the same thing over and over and over, but if you tried to point that out, he would just say that he never does that - because he can't remember doing it. Not being able to remember where the bathroom is, that is quite normal. On a good day he would deny that this ever happens. How could anyone forget something like that..not him...never happens...

He believes that his paranoid delusions about our "evil neighbours" and their "hate campaign" are completely real. These things are happening, and no-one can deny it. There's no point in saying otherwise - these things are happening. Yes, our neighbours really do creep out at night to climb onto our roof to plants weeds there to damage our house. Even though anyone else can see they are completely irrational and make no sense, he has built a sort of mental structure which is the only way to "explain" what are to him contradictory and strange things.

This is so common - you so often hear about people with dementia talking about mysterious "someones" who "move" or "steal" things. This is their explanation for putting things away in bizarre places and then forgetting doing so.

The second cause of denial is pure denial. It is avoidance of the pain that comes with admitting that there is something wrong with you mentally. Most people have no problem if they can't walk without a stick. But admitting your brain is failing is something else..
 

burfordthecat

Registered User
Jan 9, 2008
1,707
0
Leicestershire
Hi Hazel

Thank you very much for your comments about driving. Believe me, it is something which I constantly think about. I am in touch with dad's GP and have made her aware of exactly what is happening. At the end of the day, at my dad's age, the doctor has to agree to have his licence renewed. I do not want to be the one to remove his freedom to drive. I do have to put trust is the GP ,who I have known for over 35 years that she will make the right desicion at the right time. Being honest, I do not want to play "God" and say that dad should no longer drive unless something major was to happen. He does not drive very far now, mainly to the doctor's surgery, or to do shopping, 15 miles at the most.

He is a very fit, active man for his age and up until this memory problem was looking after himself really well. So much so that only a few years ago his chose to help an elderly friend(in his 90's) but visiting him everyday, shopping, sorting out problems etc. Dementia is just so cruel - for everyone.
 

Lucille

Registered User
Sep 10, 2005
542
0
Being honest, I do not want to play "God" and say that dad should no longer drive unless something major was to happen.

Dementia is just so cruel - for everyone.

Hello Burfordthecat

Welcome to TP.

I've included your quote above, as I'm afraid I'm with Hazel on this one. I think you should either notify the DVLA or keep on at your dad's GP. It's not about your playing 'God' but about keeping your dad and other users of the roads (and pavements) safe.

I appreciate you're in a tricky situation as your dad is in denial, but I think you need to write to his GP and keep on at him. (It took me several visits,letters and phone calls before I could get my mum's on board). Firstly, to see if your dad's doc can refer him to a consultant for a diagnosis. Secondly, because you shouldn't have to be running back and forth whilst trying to manage your own family. If Social Services can become involved, you might be able to arrange for a drop in carer to pop in and give your dad his tablets, thus saving you the hassle of calling to remind him. Also, it's not safe. My mum regularly overdosed (or forgot) her tablets, despite reminders. They are now dispensed from a dosette box and handed to her by a drop in carer. She, like your dad, is very independent and gets very 'shirty' when people try and interfere (her words). I and others on here, have had to master the art of 'going round the houses' for the most simple requests of our loved ones ... even then we walk on eggshells! :) The problem with dementia, as you said, is that it's such a cruel disease that quite often can't be 'seen' by those who are suffering from it.

Persevere with your dad's GP and post back and let us know how things are - you deserve some help.

Best wishes.
 

gigi

Registered User
Nov 16, 2007
7,788
0
70
East Midlands
Hello Burfordthecat,

My husband has AD and believes he is completely capable of looking after himself,should still be driving and that apart from being a bit forgetful there is nothing wrong with him. Sometimes he denies having AD.

But he does have it and is slowly worsening and could not manage alone.

As others have said denial is common.

I don't envy you your situation but it sounds like your dad's GP is understanding. It is imperative that your dad doesn't drive. He should also be seen by a specialist and the GP should refer for that.

He obviously does need support and you cannot take that on board because of the distance. There will be solutions but they won't happen immediately. Keep pushing the GP-and keep in touch here.

There's always help and support-and a whole range of advice from people in similar circumstances

Love Gigi xx
 

burfordthecat

Registered User
Jan 9, 2008
1,707
0
Leicestershire
Good evening

Just a quick note to say thank you to everyone who has replied. It is good to know that there is a mountain of experience and advice out there that I can call on.

I would just like to provide some more information. There was a concern raised over dad's medication. I am personally responsible for all of dad's regular medication. I collect it each month from the GP and then load weekly dosset boxes for him. Currently, I think that it is under control.( these tablets are not for Altzheimers just other ongoing medical conditions) I have bought some easy to use boxes which have one compartment per day with the day of the week written on top. When I ring, I remind dad which day of the week it is and ask him to empty out that section of his dosset. Then, I ask him to tell me what his tablets look like(that way, I can make sure he has the correct ones), then I ask him to pour a glass of water and take them. As dad does not remember to take his tablets, I am not worried that he will take another dose because he just won't remember. I have also pinned a note on the kitchen wall to remind him that I am dealing with all his tablets and to ring me if he has any problems (my number is a preset on his phone).

Interesting that a couple of people have said that dad's GP needs to refer him to a specialist. The doctor has said to dad about having his memory assessed, but he denied that there was any problem. How can I get dad checked if he refuses. During a private phone call with dad's GP, she has agreed that dad "is not himself" even though during our joint visit to the doctor he managed to "walk the walk and talk the talk" making me out to be a liar! Has anyone else been in the same situation and how did you overcome it?

I am very concious that it has taken dad many years to "allow me" to help him with certain things. As I am his only carer the last thing I want to do is upset him so that the barriers come down and he states "just leave me alone, I will manage fine on my own".

One of the main reasons for taking dad to the doctors this week was because we(myself, husband and 2 kids) are planning to go on holiday for 3 weeks in the summer. I am aware that I also need to spend quality time with my young family as well as looking after dad. In order for me to enjoy my holiday, I need to have "someone" in to dad's each day to remind about tablets and sort out any other problems. I thought that SS would help but they have said "no". As dad has not been diagnoised with AD or short term memory loss then they will not send in a carer. This situation is impossible, dad won't agree to be assessed and until he has been SS won't help. Dad has already said to me that he would be happy to have a carer each day whilst I am away in France, "if hat would make me happy".

The whole situation is really frustrating, I feel as though I am walking with one foot nailed to the floor. Is there anything that I could do privately i.e pay for a carer.

Hope to hear from you.
 

Cate

Registered User
Jul 2, 2006
1,370
0
Newport, Gwent
Hello Burfordthecat

Many many of us have walked a similar mile in your shoes. My mum has never had any insight into her AD, she also totally refused to go to the doctor, why would she when there was nothing wrong!

With the help of the GP we arranged for a Consultant Psychiatrist to visit mum at home to do an assessment. We simply said that the doctor had a responsibility to check out all folk of mums age, which she accepted. Yes she walked the walk and talked the talk too, but these are professsional people who have heard it all before, and can see right through the performance.

Sylvia's suggestion of keeping a diary is an excellent one, we did the same and sent it to the Consultant prior to his visit to mum so that he had some insight before meeting her. I would also take this opportunity of putting down all your fears and worries about the driving, dad lighting fires etc.

As you are going away in the summer, I would certainly not put off getting the process started, as with everything there is always a waiting list.

I wish you luck, the only other advice I can give you is, take each day as it comes.

Love
Cate
 

jenniferpa

Registered User
Jun 27, 2006
39,442
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You can definitely pay privately for an agency carer to come in. It's possible, if your father has any level of savings, that he wouldn't be entitled to social services help anyway. Obviously if he hasn't any savings then SS should provide the service, but if it's a case of being able to go on holiday or not, you may find it easier (if not cheaper) to take the DIY approach. Your local authority should have a list of agencies that can provide this care - the going rate is £12 to £15 a hour.
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Our local branch of Alzheimer Scotland has started offering this service at £14 and hour. It might be worth contacting your nearest branch, if you are thinking of paying for it yourself. If they don't provide the service themselves, they may be able to recommend an appropriate agency.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,455
0
Kent
Is there any possibility you could arrange for your father to have a `holiday` at the same time as you? Could you convince him you would enjoy your holiday more if you weren`t worried about him being alone for 3 weeks?

My grandmother was always happy to go to a `convalescent home` when we went on holiday, so I just wondered............
 

Nebiroth

Registered User
Aug 20, 2006
3,510
0
On way forward is connivance with the GP and consultant. Just get the GP to ask dad to have a "health check" which is "Normal for everyone his age". You should find that most doctors are willing to do this, they will have been through it before. It is quite normal for someone in the early stages of dementia to believe they are perfectly well. Indeed they often adopt compensatory behaviors, such as filling in gaps in conversations with nonsense words (like my dad and his "wassnames").

I think you will find that most people, particularly the older generation, view doctors as authority figures and are generally reluctant to ignore "doctors orders". They may grumble about it and say they don;t see the point, but will usually comply.

Until you have a diagnosis you can;t really proceed.

Don;t worry about dad putting on a performance. This is quite normal, and the consultant/specialist will have seen it many times before and will see right through it. It sounds cruel, but the tests are specifically designed to "trip people up" by getting around the little "tricks" they have adopted to compensate. These include not answering questions, changing the subject, giving a vague response that sounds like it is relevent but isn;t, or getting someone else to answer or fill in bits of sentences.

My dad used to be able to put on quite a performance, but his failings were instantly, glaringly and painfuly obvious through the MMSE test.

My dad has been having routine heart/blood tests for many years. Just before one of these we alerted the GP that he was having memory problems that were getting worse, and it all went from there.
 

burfordthecat

Registered User
Jan 9, 2008
1,707
0
Leicestershire
Good evening

Thanks again everyone who has posted. Just to follow up one posting, does anyone know the financial implications of existing savings on needing to pay for care services from SS. I have spent a long time this evening online trying to find out more. The only information I found was that if savings and assests were greater than £21,000 then care provided by SS would need to be paid in full.

Any help would be great as I have an assessment meeting with SS this coming Wednesday. I would rather go into this meeting with "open eyes" then I am less likely to have "the wool pulled over them". Sorry that I sound so cynical but other members experiences have set off alarm bells.

Thank you
 

Lucille

Registered User
Sep 10, 2005
542
0
Hi Burfordthecat

I think you're right, in that anything over £21k precludes you from rebates for SS care. Of course, if the figure starts to decrease then I think the SS contribution increases.

And you're not being cynical ... just trying to find out everything you can. This illness is a bit like peeling an onion, there's always something else underneath, be it medically related or financial!

Let us know how you get on.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Are you possibly talking about the "tarrif income" implications of having savings? There is a calculation that is done where if you have under the £21000 for each £500 of savings you're assumed to have so much income and that how they calculate how much you should be paying. I think the information you want should be in here http://www.dh.gov.uk/en/Policyandgu...andassessment/ChargingforSocialCare/DH_079535 or possibly http://www.dh.gov.uk/en/Publication...ions/PublicationsPolicyAndGuidance/DH_4117930 (this is the most recent one I think)
 
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jenniferpa

Registered User
Jun 27, 2006
39,442
0
Another thought if you haven't already done so - some LA's have their care rates on their websites so make sure to check that as well.
 

burfordthecat

Registered User
Jan 9, 2008
1,707
0
Leicestershire
Good evening

Thanks again everyone for the superb information. I will certainly follow up all the links before the "dreaded" SS meeting on Wednesday.

Silly question, but as I am new to posting, I could do with some help.:confused:

Once I have had my meeting with SS on Wednesay, do I post on this thread or do I start a new one, don't want to get it wrong again!;)