Explaining what will happen with her dementia to my mum

[gm1632]

Hi,
I'm new here. My mum was diagnosed with Alzheimer's dementia in December. She is still very capable physically, but is really struggling emotionally, and I think a lot of this comes from her fear about what the future holds. My grandad (her dad) also had it, but the memory clinic doctor explained that dementia is different for everyone. Right now she is looking to me to explain to her, and getting angry when I suggest that my sister (a clinical psychologist!) might be better placed to explain it to her. My mum struggles with comprehending written information so leaflets/websites might not be much good. Would a memory nurse from the local memory clinic, or someone from one of the organisations (we are already in contact with Dementia Forward) be able to help with this?

Thanks.

 

[Sarasa]

HI @gm and welcome to Dementia Talking Point You'll get loads of help and advice here. It's very supportive community.
I wonder if this thread Compassionate Communication with the Memory Impaired might help.
I think the best thing is to explain things as simply as possible and not to dwell on it all too much. In the background it's best to get things such as Lasting Power of Attorney in place if you haven't already and you think your mother would be able to understand in the moment what it is.
My mother's doctor told her that just as she was complaining about various aches and pains that showed her body was aging, her brain was aging too, so it wasn't as fast as it once was. Would that be enough to satisfy your mum? I don't think going into clinical detail about what the progress will be will help her. In the short term it'll just upset her and in the long term she'll forget.
I'm sure others will be along soon with their experience and advice.

 

[gm1632]

Hi. We are currently sorting LPA which will be very helpful. The compassionate communication thing sounds really helpful too.

 

[northumbrian_k]

It is not an easy thing to do if the person is insistent but if possible I would suggest trying to take the focus off the Alzheimer's. In a situation where a person is worried, perhaps losing some comprehension and liable to forget what has been said, going into detail about the disease is likely to be counter-productive. That and the fact that - despite common characteristics - it affects people in different ways and to various timescales makes the task of 'explaining' almost impossible and potentially very repetitive. It would be better to divert attention to all of the good things that you can do together. Perhaps you could practice a few ways of taking her mind off the subject. The compassionate communication guidance will help. Reassurance that she is important and loved is better than going over the same old ground trying to explain the unexplainable. It may be that without having Alzheimer's to the forefront of her mind she might start to forget about the diagnosis or become unaware of it through anosognosia (a lack of ability to perceive the realities of one's own condition.). I found that not trying to explain things to my wife, diverting where necessary, and concentrating on living as though she did not have Alzheimer's was far better than causing needless distress by helping her to understand her illness.

 

[Canadian Joanne]

All I would say to my mother was that her memory wasn't what it used to be. I agree with @Sarasa and @northumbrian_k that a short and vague explanation is best and switching the subject when possible.

 

[Lawson58]

Hi,
I'm new here. My mum was diagnosed with Alzheimer's dementia in December. She is still very capable physically, but is really struggling emotionally, and I think a lot of this comes from her fear about what the future holds. My grandad (her dad) also had it, but the memory clinic doctor explained that dementia is different for everyone. Right now she is looking to me to explain to her, and getting angry when I suggest that my sister (a clinical psychologist!) might be better placed to explain it to her. My mum struggles with comprehending written information so leaflets/websites might not be much good. Would a memory nurse from the local memory clinic, or someone from one of the organisations (we are already in contact with Dementia Forward) be able to help with this?

Thanks.

Perhaps your mum is exhibiting fear and anxiety and rather than looking for an explanation from you, is looking for reassurance and some certainty that she won't be left alone to cope on her own.

Though this might seem to you to be an irrational notion, for your mum the fear is genuine.

In the months following my husband's diagnosis, he was very anxious and in one of the very few discussions we have ever had, I promised him that I would never abandon him. That seemed to help settle his fears.

Just a suggestion.

 

[lemonbalm]

I used to tell my mum that she might not be able to remember things quite as well but it was ok because I could remember them for her. If she's struggling to speak, I say that her words have run away but they'll be back later when she's not so tired, or her brain just gets in a bit of a tangle sometimes but not to worry, it will untangle itself a bit later. I think the use of gentler, kinder words and language can be quite powerful if it suits the person and means they worry less about it. My mum's dementia is quite advanced now though, so this might not be appropriate for earlier stages. I never use the word dementia because it would frighten her (and she wouldn't believe me anyway).

 

[Jaded'n'faded]

Well, you could tell her she will get worse every day, that her memory might be a bit glitchy at the moment but that's nothing to how it will be soon. You could say she will lose all sense of reality, have confabulations and delusions and possibly hallucinations, that her moods will change, laying bare the worse parts of her character. That she will lose her sense of day and night. Or tell her she will gradually become incontinent and need people to wash her and wipe her bottom, wear nappies, etc. You could say that eventually she will no longer recognise her family or remember what they meant to her. You could say that eventually her mobility will go. She won't be able to walk or speak more than a few words and that finally - if she makes it that far in the journey - dementia will kill her.

To be honest, I don't think your mum - or anyone - wants to hear any of that, do you?

 

[Dunroamin]

Thanks @Jaded'n'faded (I assume you are a Pink Floyd fan?) for mapping out my future. Luckily I am well aware of what the future holds for me as a retired medic ? However as far as the original poster is concerned, none of us actually know or can predict as PWD vary so very much. There are individuals diagnosed some years ago still living varied and fulfilling lives, acting as ambassadors with some on the lecture circuit, some writing blogs and books and so on.

Practically speaking @gm1632 your relative is at an early post diagnosis, and I myself became anxious and upset when I saw my scans for myself and was ultimately diagnosed with Alzheimers. This phase lasted for a few weeks We found a brilliant support worker via the Alzheimers Society and we learn and move forward together as a team I was not aware of Dementia Forward but understand it has a small geographical remit. i am sure their helpline will give you advice and support if you ask and specify your concerns. Services can only support and advise if you are open and honest about needs /concerns etc. Having done so myself I rest easy knowing my future is as prepared for as it can be and legal and financial aspects taken care of. I have a DNR and living will in place.

I hope this all makes sense and I wish you well in your journey.

 

[Sarasa]

I was about to post more or less what @Dunroamin has said. Just because your mother may develop all the symptoms @Jaded'n'faded outlined doesn't mean she will.
Just take each day at a time and address each of her concerns as they come up.
My mother was firmly in denial that she had dementia (vascular in her case), so there was no point in me pointing out that she did. Instead be ignored the elephant in the room and just addressed things as they came up.

 

[Arty-girl]

Well, you could tell her she will get worse every day, that her memory might be a bit glitchy at the moment but that's nothing to how it will be soon. You could say she will lose all sense of reality, have confabulations and delusions and possibly hallucinations, that her moods will change, laying bare the worse parts of her character. That she will lose her sense of day and night. Or tell her she will gradually become incontinent and need people to wash her and wipe her bottom, wear nappies, etc. You could say that eventually she will no longer recognise her family or remember what they meant to her. You could say that eventually her mobility will go. She won't be able to walk or speak more than a few words and that finally - if she makes it that far in the journey - dementia will kill her.

To be honest, I don't think your mum - or anyone - wants to hear any of that, do you?

Totally agree. I only talk to her about the fact her memory is worse than it used to be. My fear is that other people, eg, doctors, nurses, carers etc. will let the cat out of bag and I really despair of how it will affect her. Mom has Alzheimers and ten years ago she care for my dad who had Vascular dementia and I know she remembers quite a bit about that as it cause her a lost of distress at the time. If she is told that she has any type of dementia, I'm not sure she, or I, will be able to cope with the fallout.