telling mum about dementia

[soisolated]

Hello, I really need some advice from people with experience. My mum has dementia, quite progressed. She lives overseas and has not has a formal diagnosis, however she has memory loss, confusion, difficulty writing, cannot prepare food, personal hygiene and toileting habits are declining, she forgets my name, no idea of dates, personality change, aggression, swearing, etc... I am trying to convince her she will need additional care, possibly carehome. I have tried in the past to talk to her about this and she has said she doesn't want to know. But now this is at the stage where she cannot cope and needs to be looked after. Do I tell her she has dementia? will that upset her more? or do I make up a reason she needs to stay somewhere else for a while and keep saying it has been extended. Her memory loss means she has no real sense of time passing. I want a formal diagnosis and to understand what is happening to her and how it will progress.

The back story to this is she has always had mental health issues and was in an abusive relationship for 40 years. We have not been close in a long time, her choice. My sibling has been providing care but we both feel this now needs to be professional. He thinks it best not to tell her or that I do as she relys on him and thus would destroy trust. He is also adamant she is not as bad as she seems.

Please help I am at a loss

That is a tough situation, OP, you have my sympathy

We went through similar with my father, except in UK. From my experience and your description of your DM's health, I don't think telling her would make any difference. She will prob forget you told her within the hour. I would suggest instead focusing on getting her to a doctor who can make a proper diagnosis. My DF adamantly refused to go and social services wouldn't get involved beyond attempting to visit (he closed the door on them so that was that). We literally couldn't do anything except help him out until he sadly had a bad fall and ended up in hospital where they realised he had no capacity to look after himself any more. If you and your sibling can persuade your DM to go to a doctor (preferably your family doctor so you can advise your concerns in advance), they will quickly be able to see she has problems. The hard part will be persuading her ... perhaps try telling her it is for a routine check-up or for any condition she already has/ is used to going to the doctor for?

Good luck.

Good morning. When I was met with resistance with my mum (after seeing her stop washing, hair greasy, same clothes day in day out, house full of rotting food) I wrote to her GP outlining numerous examples of how things weren't 'right' . He received it, rung me, asked me to book a phone appointment and as a result we had a really long chat about my concerns. End result was initial assessment, blood tests, scans and then an Alzheimer's diagnosis. That letter was the best thing I ever did and I wish I'd done it sooner. I did have to be a bit devious getting her to the GP but sometimes you've got to do what's necessary

Thanks so much for your replies. It really helps.

I was thinking that she needed to know, but I guess she does know. Now I think it's welfare we concentrate on and achieving that in the gentlest way possible.

I'd suggest the Talking Point forum run by the Alzheimers Society. It's very helpful.

I do think it’s important she is formally assessed, for both your sakes.

Essentially, you need to tell her your concerns but not say ‘You have Dementia’ because you don’t know for sure. Maybe say ‘I think we both know you’ve had memory problems for a while now’?

A consultant I used to work with told this story:
A couple go to the doctors because they’re worried he might have dementia. Doc does some tests and then takes the wife on one side and says ‘We have the test results, your husband does have dementia. Should we tell him?’ She says ‘Oh no, it’ll only worry him’. Then the doc says ‘Actually we have your tests results too, do you want to know if you have Dementia?’ of course she says yes!

We want to protect those we love but if you go through the assessment process together, you can make plans together wherever possible. I’m sorry you’re going through this, it is awful.

Thank you I have looked at the talking point, am going to join. We all need more support.

That's a really good sentence to start with faith, she definitely will become upset if dementia is mentioned and we need to know what type of dementia she has!

Agree about not mentioning dementia. Older people often have a particular fear of any sort of mental illness, perhaps because of the stigma it used to have.

I am a bit sneaky. I would wait for a time when my mother was in a constructive/lucid mood (tip is to set the scene by bringing a present or taking her out for tea) and then talk through options and decisions.

I could then understand her concerns. When it came to actually making/carrying out the decision I would first say 'we decided' relying on the fact that she would not confess she did not remember, and then provide the reassurances she wanted.

So her move to very sheltered housing was 'till she was better', with her previous flat rented on a six month tenancy, not sold. At that point she was content with the reassurance that changes did not have to be permanent. Not least she needed to believe that she would get better.