About to tell mum diagnosis..help/advice welcome

Patr1ck

Registered User
Sep 19, 2017
7
0
First post....mum diagnosed 3 months ago and between 4 sons we agreed not to tell her fearing the worst.....now agreed it would be better and easier long term to tell her, which we will do next Thursday. Apart from the usual, letting her know that we are there for her and will be there to help and support and of course, we love her.....any other advice would be most welcome as I can't currently think beyond what I just mentioned......I'm feeling totally blinkered.........Any other advice or suggestions most welcome so we can prepare as best as we possibly can..........thanks in advance......oh, mum is in early to mid (I believe) stages...so she is aware, although conversations are becoming shorter. She will know what it is....but not necessarily what it really means.......thanks
 

Katrine

Registered User
Jan 20, 2011
2,837
0
England
Offer feelings not facts

Hi Patr1ck. I have to ask, why? How will it benefit your mum to tell her this, will she understand, and will she remember?

I honestly don't think you can prepare someone for this. Everybody's journey is different. There are recognised stages but no standard length of time for progression. Your mum certainly has a life-limiting condition, but it's all relative. Dementia is terminal, but can take decades to damage the brain sufficiently to have this effect. In the meantime, some other ailment could get you. Humans are frail and complex creatures.

You really are building yourselves up for the big moment. All her dear boys gathered together, then suddenly a confrontation telling her that you all know something is seriously wrong with her. I can't see that being any sort of relief to her worries, just a humiliating and frightening experience.

I would let her set the pace. If she asks what is wrong, or says she needs to go to the doctor for some pills for her memory, then you can say the doctor knows she has memory problems, that it's quite common in older people, and that you all love her and are there to support her etc. as you suggested.

I don't think it is kind to your mum to spell out the likelihood of dementia decline. From my own experience both my mum and my mum-in-law wanted the doctors to make them better. My mum said she couldn't bear it if she wasn't going to get better. My MIL said it was only old age. Your instinct is to offer family support and a feeling of security. That is definitely the best way to go.
 

cragmaid

Registered User
Oct 18, 2010
7,936
0
North East England
Hi, it might help if you were to have a discussion about her banking or will or similar....ie " John was just telling me how they've sorted out the Power of Attorney forms for his mum and dad. Its so if one of them gets ill, the family can organise what treatment etc should happen" " You know, Mum John's dad is a bit like you, his doctor called it Memory Problems related to Dementia. That's what your GP said too".

I used to call my mum's problems her colander brain that is to say some things stayed in and some slipped through the holes and I would say that her filing cabinet was full so some bits slipped out. She knew she had Dementia. She was there at the appointment and she had the letters. It might be a bit overwhelming if all of you confront your Mum together, but you can simply just start slipping the word in every now and then.

I'm not saying this to be cruel, but sometimes the fear of the word Dementia stops us being natural. Some people manage to care for their folks and never use the word, I was not one of them. I believe that the old time fear of Dementia and Looney Bins and madhouses will perpetuate unless and until it becomes accepted that Dementia is just an illness, most people can talk about Cancer or Diabetes.....I think we need to be able to talk about Dementia too.......

but what I don't think is that all of you meeting her and talking about how you'll all be there and this will happen as it develops and that will happen..... I think this will scare her more. After all not every Dementia Patient gets every symptom in order.... some stay mildly affected for the rest of their life and others go downhill rapidly. You won't know until whatever happens, happens! Talk about the practical things, her will, the POA etc but let her family life( and yours) go on as normal for as long as possible...... and you guys should be fine.
 
Last edited:

Selinacroft

Registered User
Oct 10, 2015
936
0
I'd also suggest not making a big deal and announcement to. I expect mum is aware she is not as with it as before-it won't help if she sees all four of you looking worried and upset- I would suggest not lieing to her about it and by all means tell her you love her and are there for her and any concerns to contact you but if do "tell her" she may well not choose to believe it anyway. I've seen Dad reply to someone who asked if he had dementia- "No of course not" and I'm sure when he is more himself he truely believes it but on bad days , he would be too poorly to understand anyway so why give it a scary name?
 

jugglingmum

Registered User
Jan 5, 2014
7,085
0
Chester
Part of the disease is denial and being unable to understand anything is wrong

My mum understood her memory wasn't so good but beyond that she really couldn't comprehend the overall situation.

She asked a couple of times what the tablets are for, and I've said because she forgets things and she can cope with and understand that.

As to stages ie was convinced my mum was early mid stages as she seemed so far gone when I first realised the situation, however she is clearly only early stages.

Sadly early stages still means who she was is no longer there, but she is still relatively independent. There was a crisis and she was diagnosed over 3 years ago and she has deteriorated slightly but not significantly in that time.

Memory wise I suspect she could have been diagnosed 3 or 4 years earlier. It is a long slow burn illness, and so you need to keep reserves for dealing with this for many years.

Like many others mum mum couldn't cope with how things were, but not aware enough to realise, but on the other hand aware enough of anything we 'took' over for her.

Pick your battles as there will be plenty of them, but trying to explain to someone who can't comprehend isn't one of them, and may cause more upset than it solves.

Edited to add: picking up on what cragmaid has posted, my mum made comments about us thinking she was mad and clearly feared being sent to 'the madhouse', my gran died of dementia in 95 and my mum made sure this was on her death certificate, so mum was in the past aware of what this illness meant so maybe this is why she was so determined nothing was wrong. I do however make sure I tell everyone that my mum has dementia, and make them aware that the memory loss is only one of the problems.
 
Last edited:

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
It's now over three years since my OH was diagnosed with Alzheimer's and at that time, the geriatrician told him exactly but gently what he had.

Since then he is mostly in denial though there are very rare moments when he will acknowledge the situation and we can have some sort of vague discussion about it.

He is one of those who stayed on an even keel for a long time but there has been noticeable decline in the last few months. He also has serious cardiac problems and these bother him much more than any thoughts of dementia.

Frankly, unless your mother asks specific questions, I wouldn't be too hasty to inform her of her condition. Your mother is lucky to have such loving concern and support from her family but she also needs to feel safe and secure and I don't think that giving her disturbing news will assist her.

You are just starting on this long long road of caring for a person with dementia and perhaps it would be good to learn as much as you can to help you adapt as things change as inevitably they will.
 

Patr1ck

Registered User
Sep 19, 2017
7
0
Hi Patr1ck. I have to ask, why? How will it benefit your mum to tell her this, will she understand, and will she remember?

I honestly don't think you can prepare someone for this. Everybody's journey is different. There are recognised stages but no standard length of time for progression. Your mum certainly has a life-limiting condition, but it's all relative. Dementia is terminal, but can take decades to damage the brain sufficiently to have this effect. In the meantime, some other ailment could get you. Humans are frail and complex creatures.

You really are building yourselves up for the big moment. All her dear boys gathered together, then suddenly a confrontation telling her that you all know something is seriously wrong with her. I can't see that being any sort of relief to her worries, just a humiliating and frightening experience.

I would let her set the pace. If she asks what is wrong, or says she needs to go to the doctor for some pills for her memory, then you can say the doctor knows she has memory problems, that it's quite common in older people, and that you all love her and are there to support her etc. as you suggested.

I don't think it is kind to your mum to spell out the likelihood of dementia decline. From my own experience both my mum and my mum-in-law wanted the doctors to make them better. My mum said she couldn't bear it if she wasn't going to get better. My MIL said it was only old age. Your instinct is to offer family support and a feeling of security. That is definitely the best way to go.


Hi Katrine,
there will only be two of us there...sorry that wasn't made too clear.. and was planning a gentle conversation to start with...I think one of the reasons I want mum to know, is that I feel like I am entering a lying and deceiving area...and that is the last thing I want with mum.

She was supposed to start taking the memantine starter pack weeks ago.....I told her that these were for her memory.....while I was not there, she collected the memantine herself and while at home, started to read/scan the medical leaflet inside (she never reads this stuff..never).

When I got there..she mentioned under her breath..'alzheimers'...as if to test me..as it was obviously written on the leaflet...I managed to ignore it this time...but I didn't feel so good about it.

To get her to continue taking the memantine, I feel I need to be honest with her...as she has never been a 'pill' person. If we have the conversation, at least I can tell her what they are really for, and if she doesn't want to take them, then that's her decision...right?

AS also say that they feel the patient always has the right to know. She has been ok at the doctors when the Dr mentioned 'early onset dementia' in front of her.......I'm not sure how much of that phrase she understood.

She is also asking/hinting what is wrong with her...but not necessarily in a direct way...she knows something is not quite right...My mum does have a right to know so she can make decisions while she can, right?

Thanks for you response... I am open to more advice or suggestions from you
 

lemonjuice

Registered User
Jun 15, 2016
1,534
0
England
. . .
I think one of the reasons I want mum to know, is that I feel like I am entering a lying and deceiving area...and that is the last thing I want with mum.

Hello Patrick,
I have always been an 'honesty is best' person having been brought up like that by my parents. I did find it very difficult to 'sugar-coat the truth' with my mother but really. looking back in hindsight, it is often the only way to cope.

. . .she knows something is not quite right...My mum does have a right to know so she can make decisions while she can, right?
Yes she does, . . .but her ability to 'cope' with the truth is quite another thing. Even supposing she were to remember the conversation and you don't end up having the same conversation over and over.

Back in 2010 when my mother was finally 'diagnosed' the Psychologist came straight out and told my mother. I was furious and kept trying to make signs at him behind my mother not to tell her. Later when I challenged him on it he simply said, 'It was the patient's right to know.' I suspect he had not himself ever had a person close to him with dementia and had simply no idea of the devastation of that diagnosis, particularly so for my mother and I, because we had seen the ravages of severe end-stage dementia with other relatives. My mother was only too well aware of what that 'diagnosis' meant.

To be honest my mother who had been showing symptoms for many years before, suddenly did a nose-dive during the next 6 months. The Aricept did not help at all, probably because hers was Vascular rather than Alzheimers, and she never re-gained that 'competency' which she had retained up to that point. I ended up caring for her and after 18 months I was at the end of my tether, my husband and I hardly ever saw each other and we were also caring for his 90 year old parents too.

I do think that you need to consider carefully 'how much of the truth' you tell your Mum When I'd reached the end with mine and knew we would have to put her into a Nursing Home. I kept referring to how 'posh' this hotel was and did she remember how we'd had our wedding reception here. Which of course she didn't remember but it seemed to comfort her that she had enough money to live in a posh hotel. This was at the suggestion of another resident's relative who never told his mother anything different during her entire life there. Of course it was fortunate that it had indeed been a hotel and one where we'd had our wedding reception, with chandeliers and all the accoutrements of a large country hotel which made it easier for us.
 
Last edited:

Bunpoots

Volunteer Host
Apr 1, 2016
7,342
0
Nottinghamshire
Hello Patr1ck

When my dad was diagnosed the GP told him that he was sending him to the memory clinic and he was very sorry but he thought the diagnosis would be one of dementia. Can't say dad was happy about it but he remained calm. His only comment was "I never thought this would happen to me". Since that day we have dealt with things as they've come along without really mentioning the "D" word. We refer to his vaguer moments as "Brainfarts". Last bit of that word will probably disappear to the censors :rolleyes:
But you get the general idea!

Just do what feels comfortable for you and your mum. She probably does know at this early stage. Not sure that my dad does anymore...
 

Oh Knickers

Registered User
Nov 19, 2016
500
0
Patrick,

From what you have said let's unpick this a little bit. Your mum was there when the term early onset dementia was used. She is aware enough to know that the tablets are for Alzheimer's. So, your mum knows. She just doesn't want, or know how, to deal with it. That, frankly, her choice. Underneath she is possibly quite scared by the thought. Part of her may not comprehend, she knows something is wrong and is feeling rather nervous about it.

Whilst you may feel you are telling her lies what you are doing is telling her what she needs to know. She already knows she has dementia. So why tell her again?

You and your mum have only just begun the dementia journey. Make it as easy for her - and for all of you- as you can. Help her keep as much dignity as you are able. Start learning love lies (Compassionate communication) as part of keeping her dignity.

What you do need to do, as has already been suggested, is to get the POA (Power of Attorney) sorted for both health and welfare as well as finance. Say a friend has done that with their parents to ensure they are allowed to see the doctor with their parent. Some doctors can get quite sticky without a POA in place.

If your mum is agreeable, it would be wise to get one of you on her bank account. We have sorted out fraud, dubious payments and kept an eye on ensuring a dodgy male friend was not taking too much financial advantage of mother by our having access to her account.

Other things you can do is to sort AA (Attendance Allowance) sorted. You mum will get @£55 pw to go towards her care, her taxis or, eventually, clubs to get her out.

You are being very thoughtful of your mum, however, do not let your anxieties overtake the situation. You are all in the dark at the moment. Just let your love show. Your mum will be needing calm, the assurance of your support and love, not a reminder of her diagnosis. Try and enjoy who she is as much as you can at the moment. The more relaxed you are the more relaxed she will be.

A dementia diagnosis is challenging enough in itself. Just don't cross bridges before you need to.

I am sure someone will come along with links for compassionate communication.
 

Beate

Registered User
May 21, 2014
12,179
0
London
You probably best get used to the concept of "love lies". They are not told to deceive a person but to protect them from a truth they can't process. As for letting them decide whether to take their medication - just no.

It's always best not to make a big deal about it. If she's curious herself, fair enough, but if she doesn't ask and doesn't want to know - don't mention it.

Oh yeah, here's the link:
https://forum.alzheimers.org.uk/sho...ionate-Communication-with-the-Memory-Impaired
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
The trouble is people vary. When OH was first diagnosed he was fine about it and we even did a couple of talks. The he grew to hate the word dementia which, in his mind at his stage, was the old fashioned demented and all the connertations with that. So he had a poor memory, and that's the way it stayed.
So I think you need to be led by your mother. If she wants to know more, she will probably ask, but don't force anything.
Love lies are very useful and designed not to hurt the PWD, or cause distress everytime something is mentioned.
Meanwhile, do as has been suggested, get POA for both Finance and health/wellbeing. The cheapest way is to do them online. Is council tax reduction applicable? Also Attendances Allowance.
OH spent at least 5 years in the very early stages, so there may be no problems for a while.
 

Patr1ck

Registered User
Sep 19, 2017
7
0
Hi, it might help if you were to have a discussion about her banking or will or similar....ie " John was just telling me how they've sorted out the Power of Attorney forms for his mum and dad. Its so if one of them gets ill, the family can organise what treatment etc should happen" " You know, Mum John's dad is a bit like you, his doctor called it Memory Problems related to Dementia. That's what your GP said too".

I used to call my mum's problems her colander brain that is to say some things stayed in and some slipped through the holes and I would say that her filing cabinet was full so some bits slipped out. She knew she had Dementia. She was there at the appointment and she had the letters. It might be a bit overwhelming if all of you confront your Mum together, but you can simply just start slipping the word in every now and then.

I'm not saying this to be cruel, but sometimes the fear of the word Dementia stops us being natural. Some people manage to care for their folks and never use the word, I was not one of them. I believe that the old time fear of Dementia and Looney Bins and madhouses will perpetuate unless and until it becomes accepted that Dementia is just an illness, most people can talk about Cancer or Diabetes.....I think we need to be able to talk about Dementia too.......

but what I don't think is that all of you meeting her and talking about how you'll all be there and this will happen as it develops and that will happen..... I think this will scare her more. After all not every Dementia Patient gets every symptom in order.... some stay mildly affected for the rest of their life and others go downhill rapidly. You won't know until whatever happens, happens! Talk about the practical things, her will, the POA etc but let her family life( and yours) go on as normal for as long as possible...... and you guys should be fine.

Hi Craigmaid,
we have already done POA and banking will be next. I hear exactly what you are saying re old time fear...and that is definitely there with mum...one of her biggest fears is going into a care home...for the reasons you have stated, 'looney bin', 'madhouses'..I think it is a generation thing....on reflection, mum is only mildly affected, early stage...as she is not putting the iron back in the fridge or anything else like that that I know of. There will be only two us there to discuss this, not all four surrounding her or anything as daunting as I may have made it sound before. Thanks you for this...it's more for me to consider....thank you.
 

Patr1ck

Registered User
Sep 19, 2017
7
0
I'd also suggest not making a big deal and announcement to. I expect mum is aware she is not as with it as before-it won't help if she sees all four of you looking worried and upset- I would suggest not lieing to her about it and by all means tell her you love her and are there for her and any concerns to contact you but if do "tell her" she may well not choose to believe it anyway. I've seen Dad reply to someone who asked if he had dementia- "No of course not" and I'm sure when he is more himself he truely believes it but on bad days , he would be too poorly to understand anyway so why give it a scary name?

Hi Selina,
yeah, I hear you...I do suspect that she may choose not to believe it anyway...my other main concern as mentioned in a following thread is that IF she does choose to believe it...I fear there could be a downward spiral.......it is a dilemma that I have to continue considering..thank you for your response, much appreciated.
 

Patr1ck

Registered User
Sep 19, 2017
7
0
Part of the disease is denial and being unable to understand anything is wrong

My mum understood her memory wasn't so good but beyond that she really couldn't comprehend the overall situation.

She asked a couple of times what the tablets are for, and I've said because she forgets things and she can cope with and understand that.

As to stages ie was convinced my mum was early mid stages as she seemed so far gone when I first realised the situation, however she is clearly only early stages.

Sadly early stages still means who she was is no longer there, but she is still relatively independent. There was a crisis and she was diagnosed over 3 years ago and she has deteriorated slightly but not significantly in that time.

Memory wise I suspect she could have been diagnosed 3 or 4 years earlier. It is a long slow burn illness, and so you need to keep reserves for dealing with this for many years.

Like many others mum mum couldn't cope with how things were, but not aware enough to realise, but on the other hand aware enough of anything we 'took' over for her.

Pick your battles as there will be plenty of them, but trying to explain to someone who can't comprehend isn't one of them, and may cause more upset than it solves.

Edited to add: picking up on what cragmaid has posted, my mum made comments about us thinking she was mad and clearly feared being sent to 'the madhouse', my gran died of dementia in 95 and my mum made sure this was on her death certificate, so mum was in the past aware of what this illness meant so maybe this is why she was so determined nothing was wrong. I do however make sure I tell everyone that my mum has dementia, and make them aware that the memory loss is only one of the problems.

Hi Jugglingmum,
think we are in a similar situation....mum is definitely early stages....she is pretty much 'still there'...so not as bad as I thought after reading so much about others...she definitely has that generation fear of 'madhouses' and 'looney bins'...always has and that doesn't help with any new 'pills' that she should take. She is still currently independent, but slightly isolated...as in no real circle of friends....although I have just started to get her to go swimming once a week...which should be a great help. We also moved mum a couple of years ago and she loves..LOVES her new place...she has a garden for the first time in 50 years.....I know that this has helped immensely...as she is generally very happy.........I so do not wish to upset this with 'the conversation'...but I am still torn with the honesty side.......thank you for your response...please feel free to add more...........
 

Andrew_McP

Registered User
Mar 2, 2016
390
0
60
South Northwest
but I am still torn with the honesty side
We all start out like that. But truth and dementia are not compatible. No matter how hard you might try to keep them together, it's like trying to push magnets together... the harder you try, the harder it gets for both sides.

Lies, untruths, deception, misdirection; the word itself doesn't matter. What matters is what's in your heart as you try to smooth the inevitable decline for your loved one. Truth can be used to manipulate in the hands of immoral people, and lies can be used to sooth in the hands of carers. You will learn to lie and you will learn to do it well... so well that sometimes you'll look at yourself in the mirror and wonder where this person came from.

Good luck, whatever you choose to do. I'm lucky now because I've battled through the period when I had to take control of Mum's life for her. Now all I have to consider when I open my mouth in front of her is "will what I'm about to say make her feel better or worse?"

I just wish I could stick to that all the time instead of just when typing online and pretending I know what I'm doing!
 

lemonjuice

Registered User
Jun 15, 2016
1,534
0
England
We all start out like that. But truth and dementia are not compatible. No matter how hard you might try to keep them together, it's like trying to push magnets together... the harder you try, the harder it gets for both sides.

Lies, untruths, deception, misdirection; the word itself doesn't matter. What matters is what's in your heart as you try to smooth the inevitable decline for your loved one. Truth can be used to manipulate in the hands of immoral people, and lies can be used to sooth in the hands of carers. You will learn to lie and you will learn to do it well... so well that sometimes you'll look at yourself in the mirror and wonder where this person came from.

Good luck, whatever you choose to do. I'm lucky now because I've battled through the period when I had to take control of Mum's life for her. Now all I have to consider when I open my mouth in front of her is "will what I'm about to say make her feel better or worse?"

I just wish I could stick to that all the time instead of just when typing online and pretending I know what I'm doing!
So true, about dementia and 'truth' being like 'oil and water'. I struggled for years with the necessity to be honest and coping with the backlash. :( in reality all it did was create lots of tension-filled situations and hassle. (Hindsight is a great teacher. ;))

Fortunately for me, my mother's comprehension declined so quickly after diagnosis, that after the initial 'angry stage' for some months after diagnosis, she just settled into 'complete compliance' to anything. Not at all like my mother. It was as if she simply 'gave up the fight'. Shortly after that she went into what is not dissimilar to 'locked-in syndrome', a complete non-reaction to her surroundings.

As to the 'pretending we know what we're doing', whilst in reality 'pedalling under the water like mad' I reckon we all get to be experts at that.;)
 

karaokePete

Registered User
Jul 23, 2017
6,534
0
N Ireland
...she definitely has that generation fear of 'madhouses' and 'looney bins'...always has and that doesn't help with any new 'pills' that she should take...

Why not turn that on it's head. My wife was given her diagnosis by her Consultant and reminded by me. I ensure that she takes her meds and she is keen to take them on the basis she will slow the deterioration and keep her out of a NH. My wife has Mixed D(Alzh & Vasc D) and the Donepezil(Aricept) has had a very good effect. My wife is still fearful and anxious and can get upset and agitated but generally works with me in relation to her care.
 

Patr1ck

Registered User
Sep 19, 2017
7
0
It's now over three years since my OH was diagnosed with Alzheimer's and at that time, the geriatrician told him exactly but gently what he had.

Since then he is mostly in denial though there are very rare moments when he will acknowledge the situation and we can have some sort of vague discussion about it.

He is one of those who stayed on an even keel for a long time but there has been noticeable decline in the last few months. He also has serious cardiac problems and these bother him much more than any thoughts of dementia.

Frankly, unless your mother asks specific questions, I wouldn't be too hasty to inform her of her condition. Your mother is lucky to have such loving concern and support from her family but she also needs to feel safe and secure and I don't think that giving her disturbing news will assist her.

You are just starting on this long long road of caring for a person with dementia and perhaps it would be good to learn as much as you can to help you adapt as things change as inevitably they will.

Thanks Lawson58.....
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
0
Cotswolds
As for Looney Bins and Madhouses...Should they ever be mentioned you can truthfully say that of course there are no such things now.

My husband's consultant simply told him he had slipped over into the Mild Alzheimers stage...But I guess there IS, at that stage, a duty to the patient to tell the bare facts.

Husband strenuously contested the diagnosis, but, the formalities had been addressed, and afterwards we would both mention it lightly in conversations, as a bit of mild forgetfulness...and a bit of a joke because there was no problem, just "the odd funny moment...we all have them as we get older."

That gave us the opportunity to set up, without fuss, Powers of Attorney..we both did it, naming our sons as secondary attorneys in case either of us couldn't do it in future...

It was years before I could no longer cope at home, and we introduced a new friend who would keep him company, either taking him out, or staying in with him. That was invaluable.

When it came to moving into a Care Home, we let him think I lived there too..so he usually believed I was simply busy in another room, There were times when he did understand and would ask to go home. We never said he couldn't, simply said the builders/ decorators were in and we'd be going back when they had finished... That was easier for a husband and wife, but probably you'll be able to convince your mother she's just visiting...and it's only temporary...

The truth would have upset him a lot more than the stories we told..sometimes he was more lucid than others, and it was difficult, but mostly he could be reassured, and that's the best you can do, I think.