How do I talk to my mum about her diagnosis?

[heather-louise]

My mum has recently been diagnosed with mixed dementia and I don't know how to talk to her about it. Should I try to initiate a conversation to see if she has any fears she wants to discuss with me? I don't want to upset her by mentioning it ... so all I ask is if she feels ok with the drug shes been put on i.e. no side effects. Is it best to talk openly about her memory loss? I try not to correct her when she gets things wrong but sometimes I feel I need to (if she gets the day I am visiting wrong for example). It worries me that correcting her may upset her. In general is it best not to correct someone with dementia? Will she know shes getting things wrong? Or only if shes told?
We have so far had no support from anyone - the consultant who gave us the diagnosis was so rude - he didn't even look at my mother let alone speak to her - shes a very intelligent lady and it was humiliating that he treated her as if she was stupid. I came out with so many unanswered questions I just don't know where to turn.

 

[Grannie G]

Hello heather-louise

I came out with so many unanswered questions I just don't know where to turn.

I hope you`ve turned to the right place. You may not get all the answers but you will get lots of support, information and shared experiences.

May I start by welcoming you to Talking Point and giving you a couple of links which have been found to be most helpful.

The first is an AS Factsheet After a diagnosis http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=122

You will find other AS Factsheets here.

Then there is a favourite of many. Compassionate Communication

I hope this helps and think it is enough for you to be going on with.

 

[Onlyme]

I try not to correct her when she gets things wrong but sometimes I feel I need to (if she gets the day I am visiting wrong for example). It worries me that correcting her may upset her. In general is it best not to correct someone with dementia? Will she know shes getting things wrong?
.

Welcome to Talking Point.

How about correcting any mistakes with a positive? If you Mum says I will see you on Wednesday say - Oh silly me, I have given you the wrong day, I meant Friday. Perhaps we had better put it in our diary so we don't forget. I can ring you on Friday and you can remind me?

If she forgets something and gets upset dismiss it and tell her you are always doing that it must be your hormones! Anything to help her feel its you and her and that she isn't on her own. I made Mum giggle about how scatty I had become.

Once you are with her in her world she will tell you all her fears. Mum got upset and asked what we were to do. She would never have done that if we hadn't have had a giggle.

Ask a question on TP and you get more experience than any Dr has. This board is made up of people at the coal face of dementia. I am not sure where I would have been without my friends on TP, probably not in a good place.

I hope to see you posting again soon.

 

[Mamsgirl]

Hi heather-louise,

My Mum would be more comfortable telling people she had leprosy than dementia, she finds it humiliating because she perceives people have a change of attitude - dismissive or condescending.

Granny G and Lemony have said all I could on the subject and more, and I can only agree with Lemony about introducing accurate info without overtly correcting: "Now that's funny! I keep feeling like it's Wednesday too, and have to remind myself it's Thursday", "oh, I thought X said Y, I probably have it backwards though, wouldn't surprise me today" As well as respecting dignity, there are times Mum would implacably argue day was night otherwise.

Good luck, your Mum's clearly in the best of hands with a daughter like you,
Toni

 

[uselessdaughter]

We have so far had no support from anyone - the consultant who gave us the diagnosis was so rude - he didn't even look at my mother let alone speak to her - shes a very intelligent lady and it was humiliating that he treated her as if she was stupid. I came out with so many unanswered questions I just don't know where to turn.

Welcome to TP heather-louise

The only support we ever got was from Talking Point. I really don't know what we would have done without it. Social Services took nearly nine months to do the first assessment on Dad for help at home, and then I had to refuse to get off the phone until we were given a date. We had been waiting five months for a second assessment, requested by the care company, when we took the heartbreaking decision that Dad could no longer stay at home. The consultant's office was just as bad. Despite the consultant saying that we could ring him at any time, the secretary would never put me through. When I rang in desperation one time her response was "well you have to understand that he has dementia". Yes I knew he had dementia, I wanted help and advice!!!

Please come back and ask anything you need to know. There will always be someone who has experienced the same thing and will have some practical advice.

 

[maryw]

Hello and welcome. I came to this forum late in trying to help my Mum but I had read some books by myself beforehand, including Contented Dementia, which helped me and Mum a lot. I agree with all said beforehand... We kept things calm and light and if Mum asked the same question again and again I kept calm and simply answered it again and again so she did not pick up on any annoyance, impatience or agitation on my part!!! I might have sworn in private Also I showed empathy and let her know her worries were being listened to by saying "it must be difficult for you". There are some amazing people on here and you have come to the right place

 

[heather-louise]

tank you so much

Thank you so much for making me feel welcome on the site and for your advice and support. I really appreciate it

 

[heather-louise]

thank you so much

Thank you so much for making me feel welcome on the site and for your advice and support. I really appreciate it

 

[heather-louise]

Thank you

Mary thank you. I couldn't help but notice the photo of your cat ... a Rag Doll? I have two Rag Dolls and my mum has a Siamese cross Rag Doll ... I'm so worried if she has to go into a home she will not have her cat. That's my biggest fear.

 

[maryw]

Heather-Louise, I have 2 Ragdolls too. One seal and one seal mitted. Animals are such therapy, perhaps the cat will continue to give your Mum focus and purpose in her life

 

[CollegeGirl]

Heather-Louise, I'm sorry I missed your post, just wanted to say welcome from me, too. I'm so sorry you have had no support from the supposed professionals. Does your mum have a social worker or a community psychiatric nurse? If not, perhaps it would be worth you contacting social services as they can be the pathway to support.

I agree wholeheartedly with the others - this is a great place to come for support from people who are truly experienced, and no question is too trivial or bizarre to ask!

xx

 

[heather-louise]

Thank you College girl

I am seeing my mum's GP to try to sort out some community care for my mum. I will ask about social worker / community psychiatric nurse as you suggested. At this time she is probably OK as she is - she lives with my step dad but he isn't well (heart failure) so really she has been is carer. I'm hoping between the two of them they will be able to carry on as they are for a while yet ... just so hard as I don't live close by But because I know it can take time to get things in place I want to start the ball rolling for support now. Thank you so much for your advice.

 

[Carer_london]

Sorry to hear about the situation with your lovely Mum.

My 88 year old Mum has Dementia. Mainly forgetfulness.

In the early days - I made the assumption wrongly - that she wasn't aware of her memory loss, but she is. sounds like you're doing really well. If she repeats the same question several times, I always reply as if it's the first time I've heard it. Further, I tell her the days. So I'll say things like 'It's Monday tomorrow so the Day Centre is on' (which she loves).

However, it's an excellent point that you've raised about what is right. And it concerns me to that we haven't got a medical expert contributing to this discussion, telling us what's the right protocol. So I'll send a tweet to the Royal College of Psychiatrists.

Stand by!

That said though, I've had similar experiences in that my Mum's still a very intelligent lady but some people are very patronising to her (ie when visiting relatives, they were putting the children's channel on on the TV. By my Mum loves murder mysteries and can still follow the plot).

 

[chriscaz1]

Hi
I have recently been diagnosed the doctors say I will get but not yet. Speaking from personal experience it sound like she is a very lucky lady to have you in her life. I don't know a lot about this condition as until I was landed with this diagnosis I never new anyone who had developed it.
On this site there seems to be loads of support just ask for support if your needing it just remember your not alone.

 

[carastro]

I always referred to mum's VD as her memory problems of which she was quite aware.
In my opinion I felt it was kinder than giving her the exact diagnosis.

Carastro

 

[MeganCat]

I think take a lead from her - most people on here with a diagnosis are actively dealing with their condition, and so discuss it. Other folk are different - my mum does not recognise her condition - despite significant family history with all her immediate female relatives - or doesn't acknowledge it to me. So I took the same stance and when she'd ask me on the phone what day it was I'd say I had to check on the sky remote as I couldn't remember. At the end of the day it meant her memory issues weren't being focused on and no harm was done (as she had had a diagnosis by CT just didn't want to know it - and refused to go for the results - her consultant told me). In a more lucid moment she read dementia on her care notes and was furious!

Having said that I haven't got a clue what day it is when I'm not in work and in front of the computer! No hope there!