Mum's in denial

OnlyChild1

Registered User
Jan 19, 2018
46
0
North Yorkshire
Hi, I'm new to this - my mum has not had an official diagnosis (refused to attend the memory clinic, or have someone call at home to do assessment). Her symptoms were really mild at first - about a year ago we noticed she struggled to describe things and put simple sentences together. She got peoples names muddled and forgot some conversations. More recently, she has started to report 'seeing things' - bugs with human lower bodies (!!) - at first just occasionally, but now daily. They are not in the house, but in a particular shrub in the garden. She gets really cross when we can't see them but my husband and I now just try to change the subject and divert her. Mum has started to go out in the garden and look for them - when I saw her doing this yesterday she said they saw me coming, they've hidden, but acknowledged she couldn't see them but had been watching them for some time! For a few weeks now she sees an individual or 'family' (mum, dad & child) in her room during he night - more often she describes (with great difficulty) their appearance as being just a face with a shrouded body, sometimes with flowers around them. Normal conversations are difficult and words and phrases are common - 'that thing', 'you know', 'whatsit' and so on instead of proper descriptives. Mum lives with my husband and I so we see all these changes, yet to most on the 'outside' she is not too bad. Her eyesight has deteriorated and so has her hearing - both don't help in trying to manage her. She is also very anxious. No matter what help we offer there is no solution for her and she fights all the way - nothing wrong with my eyes/hearing or memory!! I think she is in classic denial and is aware on a certain level to all these changes but she won't accept outside help or help from me and my husband. I am at the end of my tether as I just see my lovely mum deteriorating in front of me and we seem to fall out all the time.
Has anyone experience of this kind of thing? Any words of wisdom? Thank you
 

Tot

Registered User
Sep 15, 2013
14
0
You say your Mum's eyesight has deteriorated, it might be worth getting her eyes checked for macular, our Mum was seeing things at the beginning of her road to dementia and it was suggested she had Charles Bonnet syndrome. She was seeing comic book type characters. The dementia is much worse now and she's stopped seeing things, but it did explain things for us in the earlier stages.
 

OnlyChild1

Registered User
Jan 19, 2018
46
0
North Yorkshire
You say your Mum's eyesight has deteriorated, it might be worth getting her eyes checked for macular, our Mum was seeing things at the beginning of her road to dementia and it was suggested she had Charles Bonnet syndrome. She was seeing comic book type characters. The dementia is much worse now and she's stopped seeing things, but it did explain things for us in the earlier stages.

Hi Tot, thanks. Mum is 83 and I think you have to ? how much is age-related and what might be another issue? She has a history of macular and I have no doubt there is a deterioration it's more frustrating that she uses 'can't see/can see perfectly well' to suit her arguments!
 

Hazara8

Registered User
Apr 6, 2015
697
0
Hi, I'm new to this - my mum has not had an official diagnosis (refused to attend the memory clinic, or have someone call at home to do assessment). Her symptoms were really mild at first - about a year ago we noticed she struggled to describe things and put simple sentences together. She got peoples names muddled and forgot some conversations. More recently, she has started to report 'seeing things' - bugs with human lower bodies (!!) - at first just occasionally, but now daily. They are not in the house, but in a particular shrub in the garden. She gets really cross when we can't see them but my husband and I now just try to change the subject and divert her. Mum has started to go out in the garden and look for them - when I saw her doing this yesterday she said they saw me coming, they've hidden, but acknowledged she couldn't see them but had been watching them for some time! For a few weeks now she sees an individual or 'family' (mum, dad & child) in her room during he night - more often she describes (with great difficulty) their appearance as being just a face with a shrouded body, sometimes with flowers around them. Normal conversations are difficult and words and phrases are common - 'that thing', 'you know', 'whatsit' and so on instead of proper descriptives. Mum lives with my husband and I so we see all these changes, yet to most on the 'outside' she is not too bad. Her eyesight has deteriorated and so has her hearing - both don't help in trying to manage her. She is also very anxious. No matter what help we offer there is no solution for her and she fights all the way - nothing wrong with my eyes/hearing or memory!! I think she is in classic denial and is aware on a certain level to all these changes but she won't accept outside help or help from me and my husband. I am at the end of my tether as I just see my lovely mum deteriorating in front of me and we seem to fall out all the time.
Has anyone experience of this kind of thing? Any words of wisdom? Thank you
Yes. This sounds much like a Charles Bonnet syndrome, which relates to macular degeneration - but it might well be linked to dementia as well. With Charles Bonnet, because the eyes no longer 'see' as they did and the macular being so affected, the brain compensates with images - which can seem very real and bizarre. My late mother experienced quite strange images and also some dramatic (not frightening) presentations. This, after about two years, melted away. At this time her dementia was slowly progressing - not yet diagnosed. Her AMD (wet) created problems, but it was the eventual diagnosis of Alzheimer's and Vascular dementia which set the pattern of events to come. If you can manage it, a GP appointment (possibly incorporating one due for your mother) prior to assessment would be wise. I did this, although my mother, fortunately, did not oppose any appointment owing to the fact that we had regular 'reviews' for other matters and a truly excellent relationship with an exceptional GP. If there is still reluctance, perhaps a home visit by a dementia specialist. This happened to me, after the initial doctor's visit. A cup of tea and he gently asked mother some questions and observed, took notes etc. That, together with my own input (I Iived with my mother) led to a scan and a diagnosis. You might well have tried this initial approach from what you say.

I can appreciate your situation is a difficult one. You don't want to upset anyone, nor put any pressure on them. But the earlier an assessment is made the better. Once you know more or less what it is you are dealing with, that helps. Dementia is complex and each and every one of us complex too, thus individual cases can be varied and challenging.

At the end of the day, you and your husband are advocates for your mother, despite her reluctance. That alone, is a task. Denial is not uncommon, but denial evolving out of a dementia is more complex, simply owing to the fact that the one denying does not 'see' the actuality of what is taking place cognitively. Also a modicum of fear might well be in play as well.

I was able to very gently converse with my mother, at length sometimes. Explain why she was 'seeing things' and experimented with 'eccentric viewing' in respect of her AMD. But only you will know about your own mother's 'persona' and how to approach her, without sparking irritation or downright denial. It is very hard to 'touch' that spot in the one so close to you, which triggers a kind of acceptance or willingness to receive help, when dementia is present.

Locate that spot and that might well prove to be a significant turning point. And so, the very best of luck.
 
Last edited:

carrieboo

Registered User
Feb 1, 2016
110
0
herts uk
Hello

My mum had a similar reaction to yours, she refused to accept that there was anything wrong with her memory, I tried to arrange assessments but she hung up on people, hid or tore up appointment letters.... it was really difficult.

In the end I made an appointment with her GP just for myself (I have LPA) and explained my concerns. He said he couldn't do anything unless she came to see him but a couple of weeks later mum went to pick up a prescription and the receptionist told her that the GP has asked that she make an appointment to see him, which she did. I didn't know about it until afterwards but he evidently did a mini memory test and confirmed that there was a problem.

All appointments were then arranged directly with me. It's taken a long time but mum is now diagnosed and taking Donepezil and nurses are going in twice a day, she has deteriorated but seems happier and I feel better knowing that she is 'in the system'.

Good luck!

Oh, and I too am an only child - not much fun bearing all the responsibility is it?!
 

OnlyChild1

Registered User
Jan 19, 2018
46
0
North Yorkshire
Yes. This sounds much like a Charles Bonnet syndrome, which relates to macular degeneration - but it might well be linked to dementia as well. With Charles Bonnet, because the eyes no longer 'see' as they did and the macular being so affected, the brain compensates with images - which can seem very real and bizarre. My late mother experienced quite strange images and also some dramatic (not frightening) presentations. This, after about two years, melted away. At this time her dementia was slowly progressing - not yet diagnosed. Her AMD (wet) created problems, but it was the eventual diagnosis of Alzheimer's and Vascular dementia which set the pattern of events to come. If you can manage it, a GP appointment (possibly incorporating one due for your mother) prior to assessment would be wise. I did this, although my mother, fortunately, did not oppose any appointment owing to the fact that we had regular 'reviews' for other matters and a truly excellent relationship with an exceptional GP. If there is still reluctance, perhaps a home visit by a dementia specialist. This happened to me, after the initial doctor's visit. A cup of tea and he gently asked mother some questions and observed, took notes etc. That, together with my own input (I Iived with my mother) led to a scan and a diagnosis. You might well have tried this initial approach from what you say.

I can appreciate your situation is a difficult one. You don't want to upset anyone, nor put any pressure on them. But the earlier an assessment is made the better. Once you know more or less what it is you are dealing with, that helps. Dementia is complex and each and every one of us complex too, thus individual cases can be varied and challenging.

At the end of the day, you and your husband are advocates for your mother, despite her reluctance. That alone, is a task. Denial is not uncommon, but denial evolving out of a dementia is more complex, simply owing to the fact that the one denying does not 'see' the actuality of what is taking place cognitively. Also a modicum of fear might well be in play as well.

I was able to very gently converse with my mother, at length sometimes. Explain why she was 'seeing things' and experimented with 'eccentric viewing' in respect of her AMD. But only you will know about your own mother's 'persona' and how to approach her, without sparking irritation or downright denial. It is very hard to 'touch' that spot in the one so close to you, which triggers a kind of acceptance or willingness to receive help, when dementia is present.

Locate that spot and that might well prove to be a significant turning point. And so, the very best of luck.

Thank you for this really helpful insight - I can relate to a lot of this and will do some research on CBS. Unfortunately, when we first had concerns, we discussed with Mum's GP and the next time he saw her he did some mini-memory tests and suggested a memory service visit. Mum agreed, then fought it and flatly refused as she didn't want putting on the spot or having to fill in forms - in fact, she was so freaked she said she would take her own life before going. We had to back off as she was so distressed.

I have thought I need to have another word with him and see if he could speak with her under another guise.

I do hope we can find that special spot soon. Thank you.
 

OnlyChild1

Registered User
Jan 19, 2018
46
0
North Yorkshire
Hello

My mum had a similar reaction to yours, she refused to accept that there was anything wrong with her memory, I tried to arrange assessments but she hung up on people, hid or tore up appointment letters.... it was really difficult.

In the end I made an appointment with her GP just for myself (I have LPA) and explained my concerns. He said he couldn't do anything unless she came to see him but a couple of weeks later mum went to pick up a prescription and the receptionist told her that the GP has asked that she make an appointment to see him, which she did. I didn't know about it until afterwards but he evidently did a mini memory test and confirmed that there was a problem.

All appointments were then arranged directly with me. It's taken a long time but mum is now diagnosed and taking Donepezil and nurses are going in twice a day, she has deteriorated but seems happier and I feel better knowing that she is 'in the system'.

Good luck!

Oh, and I too am an only child - not much fun bearing all the responsibility is it?!


Hi, Thank you - all sounds very familiar! No, being in sole charge with all this responsibility is no fun at all, it is a huge weight anyway, but without others in the family to share it does weigh particularly heavy from time to time!
 

Hazara8

Registered User
Apr 6, 2015
697
0
Thank you for this really helpful insight - I can relate to a lot of this and will do some research on CBS. Unfortunately, when we first had concerns, we discussed with Mum's GP and the next time he saw her he did some mini-memory tests and suggested a memory service visit. Mum agreed, then fought it and flatly refused as she didn't want putting on the spot or having to fill in forms - in fact, she was so freaked she said she would take her own life before going. We had to back off as she was so distressed.

I have thought I need to have another word with him and see if he could speak with her under another guise.

I do hope we can find that special spot soon. Thank you.
Indeed. 'Trial and error' seems rather trite a saying in such circumstances. The GP has the clinical 'eye' and you have the 'daughter's intuition' which is often the key. Whilst you and your husband have the energy, things can be managed I am sure. But determining if at all possible the nature of the dementia (which sounds like it has moved beyond the very early stage) will be a step forward. I say this, based upon the description you have offered up earlier in relation to hallucinations. Dementia with Lewy bodies can present with hallucinations which often mimic 'creatures' and so on. Not as common as say Alzheimer's by all accounts, but who knows?

Anyway, it's a hard nut to crack at the best of times and your mother has you both to try and do just that on her behalf. Alas, dementia sometimes seems to throw that all back in your face!

As is said so many times on this forum, 'dementia is the enemy ... not the person'.

With warm wishes.
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Welcome to Talking Point, @OnlyChild1, although I'm sorry to hear about your mother. I hope you will find TP supportive and helpful.

As an aside, I'm another only child caring for a mother with dementia. There are a fair number of us here!

Excellent advice and information above, and I hope it's helpful and that you can find a way to get the GP on board to help you. Her hallucinations/vision issues sound both typical, and trying. My mother also has macular degeneration and cataracts and her macular degeneration is causing problems with her vision now, so you have my sympathies on that score.

I did want to point out that while I have no doubt your mum is capable of being stubborn and in denial, and this may well be part of the issue, that if she does have some form of dementia, she may also have anosognosia. This is common in persons with dementia (PWDs) and it is a lack of insight about their condition. Their brain is damaged by the dementia in such a way, that they cannot comprehend there is anything wrong with them. It's not classic denial in that it isn't a conscious rejection of facts, but rather the brain being neurologically incapable of understanding. My mother is afflicted with anosognosia AND a pre-dementia tendency for denial, plus a pre-dementia allergy to logic and reason. All of this added up to a lot of frustration and headaches for me before her diagnosis/in the earlier stages.

I mention this as you may be experiencing something similar. I struggled so much with this. Anosognosia is challenging for a healthy brain to grasp, as we know what is and isn't wrong. Last year my mother had a fractured kneecap and surgery and rehab for same, and it was a daily source of frustration and wonder to me, that she could not understand she was injured. It wasn't just that she couldn't remember, she simply couldn't comprehend it.

Sorry for going on about myself. Please don't hesitate to ask questions and continue posting. Again, welcome, and very best wishes to you.
 

Fox57

New member
Apr 25, 2018
3
0
Hi, I'm new to this - my mum has not had an official diagnosis (refused to attend the memory clinic, or have someone call at home to do assessment). Her symptoms were really mild at first - about a year ago we noticed she struggled to describe things and put simple sentences together. She got peoples names muddled and forgot some conversations. More recently, she has started to report 'seeing things' - bugs with human lower bodies (!!) - at first just occasionally, but now daily. They are not in the house, but in a particular shrub in the garden. She gets really cross when we can't see them but my husband and I now just try to change the subject and divert her. Mum has started to go out in the garden and look for them - when I saw her doing this yesterday she said they saw me coming, they've hidden, but acknowledged she couldn't see them but had been watching them for some time! For a few weeks now she sees an individual or 'family' (mum, dad & child) in her room during he night - more often she describes (with great difficulty) their appearance as being just a face with a shrouded body, sometimes with flowers around them. Normal conversations are difficult and words and phrases are common - 'that thing', 'you know', 'whatsit' and so on instead of proper descriptives. Mum lives with my husband and I so we see all these changes, yet to most on the 'outside' she is not too bad. Her eyesight has deteriorated and so has her hearing - both don't help in trying to manage her. She is also very anxious. No matter what help we offer there is no solution for her and she fights all the way - nothing wrong with my eyes/hearing or memory!! I think she is in classic denial and is aware on a certain level to all these changes but she won't accept outside help or help from me and my husband. I am at the end of my tether as I just see my lovely mum deteriorating in front of me and we seem to fall out all the time.
Has anyone experience of this kind of thing? Any words of wisdom? Thank you

I can relate to you totally. My mum was exactly the same and in the end the only way round it was to get her to the GP on the pretext of having to have an annual well-women check. It was my dad who saw the GP first to explain the situation and they did manage to get her there but I have to say, you're in for a rocky road. With mum she would not accept it and was extremely angry with my dad and the rest of us becomming very suspicious of us but doing a marvelous job of coverin gup her symptoms once diagnosed. It took such a long time to get her seen that it was too late for the medication to do any good at all and she ended up being sectioned in the end and removed from the house against her will. It was a terrifying time for all concerned and had a terrible effect on us all. My advice, get her to the GP by whatever means now before she is too advanced. The sooner she gets on medication the better as hopefully it will slow it down at least.
 

OnlyChild1

Registered User
Jan 19, 2018
46
0
North Yorkshire
Indeed. 'Trial and error' seems rather trite a saying in such circumstances. The GP has the clinical 'eye' and you have the 'daughter's intuition' which is often the key. Whilst you and your husband have the energy, things can be managed I am sure. But determining if at all possible the nature of the dementia (which sounds like it has moved beyond the very early stage) will be a step forward. I say this, based upon the description you have offered up earlier in relation to hallucinations. Dementia with Lewy bodies can present with hallucinations which often mimic 'creatures' and so on. Not as common as say Alzheimer's by all accounts, but who knows?

Anyway, it's a hard nut to crack at the best of times and your mother has you both to try and do just that on her behalf. Alas, dementia sometimes seems to throw that all back in your face!

As is said so many times on this forum, 'dementia is the enemy ... not the person'.

With warm wishes.

Thank you for reply - I have made an appointment to speak to Mum's GP tomorrow to see what they think. She is due for a routine review of her medications (heart problem) at the end of May and I hope that the GP will tie in some kind of useful review then, armed with some more information from me from our discussion tomorrow.
 

OnlyChild1

Registered User
Jan 19, 2018
46
0
North Yorkshire
I can relate to you totally. My mum was exactly the same and in the end the only way round it was to get her to the GP on the pretext of having to have an annual well-women check. It was my dad who saw the GP first to explain the situation and they did manage to get her there but I have to say, you're in for a rocky road. With mum she would not accept it and was extremely angry with my dad and the rest of us becomming very suspicious of us but doing a marvelous job of coverin gup her symptoms once diagnosed. It took such a long time to get her seen that it was too late for the medication to do any good at all and she ended up being sectioned in the end and removed from the house against her will. It was a terrifying time for all concerned and had a terrible effect on us all. My advice, get her to the GP by whatever means now before she is too advanced. The sooner she gets on medication the better as hopefully it will slow it down at least.

Hi there, oh my goodness! This sounds like a terrible scenario for you, but am guessing it can also be 'par for the course'. I am so sorry to hear your Mum ended up being sectioned; I cannot begin to imagine the overall effect of that on you all, but it sounds very traumatic.

Thank you for the advice, as you will see from my earlier post, I have made an appointment to speak with Mum's GP tomorrow and hope to get some advice/action from them very soon.
 

OnlyChild1

Registered User
Jan 19, 2018
46
0
North Yorkshire
Welcome to Talking Point, @OnlyChild1, although I'm sorry to hear about your mother. I hope you will find TP supportive and helpful.

As an aside, I'm another only child caring for a mother with dementia. There are a fair number of us here!

Excellent advice and information above, and I hope it's helpful and that you can find a way to get the GP on board to help you. Her hallucinations/vision issues sound both typical, and trying. My mother also has macular degeneration and cataracts and her macular degeneration is causing problems with her vision now, so you have my sympathies on that score.

I did want to point out that while I have no doubt your mum is capable of being stubborn and in denial, and this may well be part of the issue, that if she does have some form of dementia, she may also have anosognosia. This is common in persons with dementia (PWDs) and it is a lack of insight about their condition. Their brain is damaged by the dementia in such a way, that they cannot comprehend there is anything wrong with them. It's not classic denial in that it isn't a conscious rejection of facts, but rather the brain being neurologically incapable of understanding. My mother is afflicted with anosognosia AND a pre-dementia tendency for denial, plus a pre-dementia allergy to logic and reason. All of this added up to a lot of frustration and headaches for me before her diagnosis/in the earlier stages.

I mention this as you may be experiencing something similar. I struggled so much with this. Anosognosia is challenging for a healthy brain to grasp, as we know what is and isn't wrong. Last year my mother had a fractured kneecap and surgery and rehab for same, and it was a daily source of frustration and wonder to me, that she could not understand she was injured. It wasn't just that she couldn't remember, she simply couldn't comprehend it.

Sorry for going on about myself. Please don't hesitate to ask questions and continue posting. Again, welcome, and very best wishes to you.

Hello Amy, thank you for this insight - I have not heard of anosognosia before but can relate to what you describe. There are times when even the simplest of conversations appear to 'go over her head' and we have been saying for a while that the 'dots are not joining up' for her. I will need to do some research.

I must say how refreshing it is to receive all the helpful comments on TP - I feel like there is a lifeline. I am sure TP has supported a good many 'lost souls'!!
 

Witzend

Registered User
Aug 29, 2007
4,283
0
SW London
I think it's often not a case of denial as such - I.e. when the person is aware but won't admit it - but more often a case of truly believing there's nothing much wrong, because the person can't remember at any given point that they can't remember anything, or can no longer manage to do this or that.

Quite early in her dementia, my mother rang her bank (first Direct, she'd been with them since they started) about something - she had always been very clued up about finances.
Once she'd put the phone down I asked what they'd said.
'I can't remember.' And this was just seconds after she'd put the phone down.

Equally quickly, she'd forgotten the incident completely - which is what I mean by being unable to remember that you can't remember anything. Though it was probably just as well, since she'd only have been fretting and anxious about it.
Unsurprisingly, she genuinely continued to believe that there was nothing really wrong with her.
 

OnlyChild1

Registered User
Jan 19, 2018
46
0
North Yorkshire
Hi there, I had a chat with one of our practice GP's who arranged an urgent appointment for mum with her regular GP yesterday. Classically, she left it to me to explain and then denied most of her symptoms! One question was about her mood; she said she was happy, no issues then the minute we got in the car to come home she said she felt miserable about the prospects of all the upcoming tests and wished she could just die!

The GP was thorough; we now have ear drops and an ear syringe to arrange, as well as a referral to the hearing clinic for hearing test. He also wants mum to see her optician for a eye check and without prompting, mentioned CBS! He is going to make another referral for a home visit from the memory team. As usual, Mum agreed to all of it, though from past experience, she will eventually process it all and get upset and anxious and ask me to cancel it. Although it will cause issues, I think I have to not allow this to happen; it is all in her best interests and we do need answers now to ensure we can get her the most appropriate help.

My husband and I have been on the bug hunt today; apparently he nearly squashed one and mum can't grasp we still couldn't see them! So frustrating for her and us. o_O
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Have you tried using "bug spray" (actually just water in a spray bottle, maybe with a drop of lavender or something nice smelling) on the bugs, along with some vigorous stomping? I feel sure I read about that approach from someone here on TP. It might be worth a try?
 

OnlyChild1

Registered User
Jan 19, 2018
46
0
North Yorkshire
Have you tried using "bug spray" (actually just water in a spray bottle, maybe with a drop of lavender or something nice smelling) on the bugs, along with some vigorous stomping? I feel sure I read about that approach from someone here on TP. It might be worth a try?
Good idea! We might try this but at the moment, with things as they are, I suspect more bug-people will arrive!

Apparently, mum told my OH this morning that the sheep in the field opposite were giving birth to big lambs, which were growing really rapidly into baby lambs about 2-3 months old, also there was a boy hiding in the hush (same place as the bug-people) and people in my BF's car in the drive - otherwise, she appears quite fine!! Trying to reason through all sitings doesn't seem to help. Not looking too promising.
 

carrieboo

Registered User
Feb 1, 2016
110
0
herts uk
Hi there, I had a chat with one of our practice GP's who arranged an urgent appointment for mum with her regular GP yesterday. Classically, she left it to me to explain and then denied most of her symptoms! One question was about her mood; she said she was happy, no issues then the minute we got in the car to come home she said she felt miserable about the prospects of all the upcoming tests and wished she could just die!

The GP was thorough; we now have ear drops and an ear syringe to arrange, as well as a referral to the hearing clinic for hearing test. He also wants mum to see her optician for a eye check and without prompting, mentioned CBS! He is going to make another referral for a home visit from the memory team. As usual, Mum agreed to all of it, though from past experience, she will eventually process it all and get upset and anxious and ask me to cancel it. Although it will cause issues, I think I have to not allow this to happen; it is all in her best interests and we do need answers now to ensure we can get her the most appropriate help.

My husband and I have been on the bug hunt today; apparently he nearly squashed one and mum can't grasp we still couldn't see them! So frustrating for her and us. o_O


This sounds familiar.. when I finally told mum somebody was visiting from the memory clinic she phoned me at 7am that morning saying I had to cancel because her hair was falling out from the stress, apparently there's was handfuls of it all over the pillow (there wasn't). I said I would, I didn't, then told mum I couldn't get in touch in time. When she was due to be seen by the psychiatrist she phoned to say she'd been up all night with diarrhoea and so couldn't go... all lies.

You just have to keep in mind that you're doing this for your mum and it's in her best interests. Mum fought me all the way but now she's on Donezepil and it seems to help, she has district nurse visiting twice a day, it was all for her benefit. Frankly, I could quite happily have walked away and left her to it sometimes... but I didn't.
 

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