Converting denial into acceptance?

[Flipper12]

Hi all, I just joined this site. My uncle has dementia, is too confused & forgetful to do anything alone and has had several dr appts, scans, tests etc but is still insisting that there is nothing wrong with him except typical old age forgetfulness.

What I’m wondering is, is there any possibility of us as a family, between us, somehow helping him to face and accept what’s happening and work with us instead of against us in caring for him, or is denial of what’s happening a basically unshiftable position? I’d like to try if only because his wife is the only one trying to explain there’s something wrong in order to get him to doctors appointments so she’s getting lots of anger and abuse while he’s nice as pie to the rest of us who treat him with kid gloves and always go along with his version of events. I’ve read Contented Dementia and thought ok there’s no hope, the best we can do is try to smooth the road, but then read Wendy Mitchell’s amazing autobiography and am now wondering is it maybe not too late to enlist him into the team of people facing it head on together? (Hence my name flipper - I flip flop back and forth with everything I read!) So my question is - does anyone have any experience of someone in early stages shifting from denial to acceptance, and how did you get there? It seems like it’s worth trying if there’s even a tiny hope of success because in many ways his fear and shame and anger seem to be the biggest problems so far, and reading others stories on here, the anger and blaming one person can get so much worse once that’s the road taken. Thank you in advance.

 

[mancmum]

I am afraid we dealt with it by saying you don't have dementia (establishes you are on their side) but you are getting old and everyone needs a bit of help. Obviously only works if person is old. After being depressed in early stages he is now blissfully happy blaming everything on the fact that he no longer has a job. If he had a job all would be well.

 

[nae sporran]

Welcome to Talking Point Flipper12. Sorry your uncle has been diagnosed with dementia and is in denial. Sadly that is common, as is the stigma and my the brief moments when my partner s aware of her condition are the hardest of all. There is a guide to communicating with people who have dementia, but I think it is a bit like contented dementia in that it some not always work with everyone. https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/ will hopefully give you some ideas.
Sorry I can't offer much more, my partner accepts care from me as she thinks I promised her mother who died long before we met, and others have introduced outside carers as friends looking for a wee bit o part time cleaning work, so that may help. It is always worth asking your local authority social services for a carers assessment and finding out what support is available for you and your family. Http://carers.org will take you to your nearest carers support centre for advice and support groups.

 

[Spamar]

Not a chance! Often people with dementia will deny, and firmly believe, there is nothing wrong. It’s little use trying to persuade them either, just annoys them and makes the matter worse. OH accepted it in the early days, but it quickly became, ‘ you know your memory isn’t as good as it was......’ and he settled for that.

 

[canary]

Its probably not denial, but a common (though rarely talked about) symptom called anosognosia. Basically it means that the bit of the brain that understands that there is something wrong with you is damaged, so you have no, or limited, insight to your condition and are unable to comprehend that you have something wrong with you. Usually there is the vague feeling that Something Is Not Right. but are unable to understand that this Something is you.

Not everyone with dementia gets this symptom - Wendy Mitchell, Terry Pratchett and many people with dementia who post on here have insight, but the majority of people with dementia do not. If they have anosognosia then unfortunately you cannot get them to understand. My OH will acknowledge that he has cognitive problems, but totally deny any of his symptoms; my mum never acknowledged that she had dementia at all.

If you argue with someone who has anosognosia and try and convince them that they have dementia you will simply make them angry because they know that there is nothing wrong with them - its just their/spouse/children/neighbour/ whoever; but it cant be them because they dont have anything wrong with them. Before I realised what was going on , my OH got very angry with me and accused me of telling people lies about him.

The way to deal with this is not to argue with him and when he needs to go to appointments, love lies (also known as Therapeutic Untruths) are the way to go. This is hard to do as it goes against everything we have been taught, but necessary as it meets them at the point of their need.

I see that nea sporran has given you a link to Compassionate Communication, which is similar to Contented Dementia, but I have found more helpful

 

[Rosettastone57]

Hi all, I just joined this site. My uncle has dementia, is too confused & forgetful to do anything alone and has had several dr appts, scans, tests etc but is still insisting that there is nothing wrong with him except typical old age forgetfulness.

What I’m wondering is, is there any possibility of us as a family, between us, somehow helping him to face and accept what’s happening and work with us instead of against us in caring for him, or is denial of what’s happening a basically unshiftable position? I’d like to try if only because his wife is the only one trying to explain there’s something wrong in order to get him to doctors appointments so she’s getting lots of anger and abuse while he’s nice as pie to the rest of us who treat him with kid gloves and always go along with his version of events. I’ve read Contented Dementia and thought ok there’s no hope, the best we can do is try to smooth the road, but then read Wendy Mitchell’s amazing autobiography and am now wondering is it maybe not too late to enlist him into the team of people facing it head on together? (Hence my name flipper - I flip flop back and forth with everything I read!) So my question is - does anyone have any experience of someone in early stages shifting from denial to acceptance, and how did you get there? It seems like it’s worth trying if there’s even a tiny hope of success because in many ways his fear and shame and anger seem to be the biggest problems so far, and reading others stories on here, the anger and blaming one person can get so much worse once that’s the road taken. Thank you in advance.

I'm going to be blunt. If you wait for a person with dementia to see your point of view or agree with you ,you will wait forever . My mother-in-law always denied that there was anything wrong with her even to the end of her life, when sadly she could do little for herself. She never had any insight into her mental health condition and any suggestion there was anything wrong with her was met with simple aggression. I'm sorry to say that it sounds like your uncle is also in the same situation and that part of the brain that deals with insight has been damaged. You will need to lie to him in order to get the situation you want and go along with everything he says otherwise you will turn yourself mad trying to get him to see your logic and reasoning. It's not easy but you will have to learn to alter your own strategies to deal with this

 

[hatto22]

My mum got diagnosed over 5 years ago now. She spent the first 3 years in a complete panic at everything that came on the TV about it and worried constantly. Now she's completely forgotten that she was every given a diagnosis!!

 

[Linbrusco]

My Mum when diagnosed with Alzheimers said there was nothing wrong with her other than forgetting things just like her friends.
Even when admitting she couldnt read a book, knit, bake or cook like she used to, she was just like her friends.

My Dad 81 has mixed dementia.
According to him he is A1 and champion, and he does everythjng for himself and independant, and if I went away on holiday he would cope just fine ( Dad lives behind me)
Even when having a Needs Assesment he admitted I do all his finances, pay his bills, get cash out for him, take him to Drs, do his meds, organise his household maintenance, take him shopping!
But yet to him he could manage just fine as he is A1.

To show the extent of dementia and how it robs a person of acceptance and understanding, my Mum has been in care 3 yrs and is in end stage Alzheimers.
She cannot walk, doubly incontinent, barely eating, talking or drinking, is rapidly losing weight, sleeps 23+hrs a day but yet when we visit Dad asks us if Mum will be coming home soon

 

[Flipper12]

Thank you everyone for your replies! I’m so grateful and will look at everything on that link. I think I was afraid to recommend the tips in Contented Dementia because the Alzheimer’s society don’t agree with it but hadn’t found any practical alternatives through googling so it’s good to know there are some other “how to” guides. Thank you all!

 

[Flipper12]

I'm going to be blunt.

Blunt is good, thank you. Knowledge is power and it’s so helpful to learn from those further along the road.

 

[Flipper12]

I see that nea sporran has given you a link to Compassionate Communication, which is similar to Contented Dementia, but I have found more helpful

Thank you that’s really good to know. When I first read CD about 6 months ago, it sounded horribly patronising and prescriptive to me. But know that I know a little of what’s going on when it’s judt the two of them, I can totally see how the lies could help. It’s so hard to know what the right thing to do is. Thank you.

 

[Flipper12]

My Mum when diagnosed with Alzheimers said there was nothing wrong with her other than forgetting things just like her friends.
Even when admitting she couldnt read a book, knit, bake or cook like she used to, she was just like her friends.

My Dad 81 has mixed dementia.
According to him he is A1 and champion, and he does everythjng for himself and independant, and if I went away on holiday he would cope just fine ( Dad lives behind me)
Even when having a Needs Assesment he admitted I do all his finances, pay his bills, get cash out for him, take him to Drs, do his meds, organise his household maintenance, take him shopping!
But yet to him he could manage just fine as he is A1.

To show the extent of dementia and how it robs a person of acceptance and understanding, my Mum has been in care 3 yrs and is in end stage Alzheimers.
She cannot walk, doubly incontinent, barely eating, talking or drinking, is rapidly losing weight, sleeps 23+hrs a day but yet when we visit Dad asks us if Mum will be coming home soon

How horrible to be going through this with both your parents. I’m so sorry.

 

[SaraKate]

Hi and welcome to the site. Im new here too and I have found it such a comfort. The people on here are so knowledgable and so compassionate that I feel like they're a lifeline - and we are in the very early stages. I just wanted to say that we are very early stages so perhaps denial will come later but my husband denied everything up to the point of meeting the neurologist (which he was doing mostly at my constant prompting) then had a scan and then started reading up about it himself, thought it through, and talks to me openly about what he has read. He tends to be blackly humorous about it which I dont always find funny, but it is much much easier than feeling like I am constantly the bringer of bad tidings or 'catching him out'. I think I would try to tell your uncle gently and quietly that you think there is a genuine problem and point out some occasions? And then if you get a complete denial then backtrack and agree among yourselves that denial is another symptom and there's no point in being angry in reply. Before we got the diagnosis I found my husband's moodiness and tendency to anger really impossible to tolerate, I know think he was lashing out at me because he knew something was wrong and I was the only person there. But I am sure your aunt is finding this very very hard. Let us all know how you get on.

 

[Patrioted]

I am diagnosed with Alzheimer’s. It’s been over three years since I was originally diagnosed. I went through through the usual upset, anger, and depression before I came to terms with my diagnosis but I never went through denial. That’s because my diagnosis was based on a PET scan, the only definitive test for Alzheimer’s because it actually shows the presence of amloyd plaque which must be present in Alzheimer’s patients. Even MRI’s don’t show this until the much later stages if at all. Anyone who has a PET scan diagnosis can’t be in denial because it is irrefutable proof leaving nothing to deny. Get your uncle a PET scan and he’ll be forced to believe.

If your uncle refuses to get a definitive diagnosis it most likely because he “fears” being diagnosed with an incurable disease and not knowing with certainty at least gives him some hope that he might not have what deep down he probably believes and fears he does have. That’s how many among us felt. The way to get your uncle past this is to tell them about the benefits of an early diagnosis versus the detriments of a later diagnosis. Things that influenced me to get diagnosed was the knowledge that if diagnosed early I could get on doneprizil when it could actually do me some good by delaying the speed of my cognitive impairment. Doneprizil does little to no good in the later stages of Alzheimer’s. It also gave me time to get all my many affairs in order while I was still able to do so. Their is of great value in planning time and not putting off something you’ve wanted to do while you still can. If your uncle has a proper diagnosis he might get into a leading edge research program with real hope of leading to arrest or even a cure for his disease. It would also give him access to the best dentist care and healthcare medical personnel with specific expertise in dementia and all free of charge. He could lose this opportunity if he fails to get an early diagnosis. Your uncle needs to know this. Most importantly it’s incredibly beneficial to your uncles family members ability to plan and make arrangements for his care while he can still participate and help them with those plans. I’m sure reason alone would influence your uncle if he understood the benefits of an early diagnosis.

If your uncle still says he doesn’t care then tell him straight up that he is being inconsiderate and selfish to the very people he will have to rely and depend on for later “care giving0 and that’s both a mean and dumb thing to do. Tell him his family doesn’t appreciate his damaging stubbornness. Tell him you thought he was bothbetter and braver than that. At this stage it’s ok and even wise to be blatantly honest with your uncle if need be. Some people need this kind of push for their own good - and for yours.

 

[Rosettastone57]

I am diagnosed with Alzheimer’s. It’s been over three years since I was originally diagnosed. I went through through the usual upset, anger, and depression before I came to terms with my diagnosis but I never went through denial. That’s because my diagnosis was based on a PET scan, the only definitive test for Alzheimer’s because it actually shows the presence of amloyd plaque which must be present in Alzheimer’s patients. Even MRI’s don’t show this until the much later stages if at all. Anyone who has a PET scan diagnosis can’t be in denial because it is irrefutable proof leaving nothing to deny. Get your uncle a PET scan and he’ll be forced to believe.

If your uncle refuses to get a definitive diagnosis it most likely because he “fears” being diagnosed with an incurable disease and not knowing with certainty at least gives him some hope that he might not have what deep down he probably believes and fears he does have. That’s how many among us felt. The way to get your uncle past this is to tell them about the benefits of an early diagnosis versus the detriments of a later diagnosis. Things that influenced me to get diagnosed was the knowledge that if diagnosed early I could get on doneprizil when it could actually do me some good by delaying the speed of my cognitive impairment. Doneprizil does little to no good in the later stages of Alzheimer’s. It also gave me time to get all my many affairs in order while I was still able to do so. Their is of great value in planning time and not putting off something you’ve wanted to do while you still can. If your uncle has a proper diagnosis he might get into a leading edge research program with real hope of leading to arrest or even a cure for his disease. It would also give him access to the best dentist care and healthcare medical personnel with specific expertise in dementia and all free of charge. He could lose this opportunity if he fails to get an early diagnosis. Your uncle needs to know this. Most importantly it’s incredibly beneficial to your uncles family members ability to plan and make arrangements for his care while he can still participate and help them with those plans. I’m sure reason alone would influence your uncle if he understood the benefits of an early diagnosis.

If your uncle still says he doesn’t care then tell him straight up that he is being inconsiderate and selfish to the very people he will have to rely and depend on for later “care giving0 and that’s both a mean and dumb thing to do. Tell him his family doesn’t appreciate his damaging stubbornness. Tell him you thought he was bothbetter and braver than that. At this stage it’s ok and even wise to be blatantly honest with your uncle if need be. Some people need this kind of push for their own good - and for yours.

My mother-in-law would never have accepted any diagnosis. She had mental health conditions and a personality disorder years before the dementia diagnosis came along. This meant that throughout most of her adult life ,she did not have any insight into her behaviour and it's impact on others. We could have had all the top specialists in the world telling her about her diagnosis, she would still have refused to accept it. She never had any empathy all her life. It wasn't suddenly going to appear just because she had dementia .

 

[AbbyGee]

The way to deal with this is not to argue with him and when he needs to go to appointments, love lies (also known as Therapeutic Untruths)

OMG - I love the expression 'Therapeutic Untruths'. Thank you. Thank you. I shall hold these two words dear to my heart!

 

[AliceA]

I remember hearing someone say never take someone's prop away before you have put another in its place.

 

[Grannie G]

I think I was afraid to recommend the tips in Contented Dementia because the Alzheimer’s society don’t agree with it

I don`t think think the Azheimer`s Society disagrees with anything which may help anyone. However, one size does not always fit all.

Some publications can make people who are bending over backwards to accommodate the challenges of some people with dementia feel failures, which is the last thing any carer needs.

 

[northumbrian_k]

The most my wife will say is that she is not allowed to be herself anymore. She seemed to take in the diagnosis of Alzheimer's disease when told it by a doctor at the memory clinic in May 2016., but she never really accepted it, and long ago forgot all about ever going to the clinic. Soon after diagnosis I did try to get her to read the 'Living Well with Dementia' booklet we were given at the clinic - she could still understand what she read at that time - but she would not look at it so I dropped the idea. If she sees or hears anything about dementia affecting other people she can be quite caring without connecting it with our own altered lifestyle. Whether it is denial or anosognosia I cannot say for certain. She seems to have no insight into her condition but - after initial hostility - will now go along with my suggestions and sometimes unlikely explanations as to why we have to attend appointments etc.

I would say @Flipper12 that trying to convince someone that they have got dementia is a losing game and ultimately may just prove unhelpful to the person and to those who care for them.