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Welcome to Dementia Talking Point! Find out more and say hello.

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SophieD

Administrator
Staff member
Mar 21, 2018
1,922
London
Welcome to Dementia Talking Point :)

If you have dementia, or care for someone who does, you're very welcome to join our community and get support from others. Find out more about how to join and say hi to our friendly community on this discussion!

Finding out more

If you've got questions about how to use Dementia Talking Point click on these links below.
  • You can find answers to frequently asked questions here.
  • Our Help videos will show you how to navigate the different areas of Dementia Talking Point.
  • We also have a Quick Guide explaining how to use Dementia Talking Point including logging in, posting, replying, checking private messages and searching.
  • Also we recommend having a read through our Guidelines which are some useful tips and things to remember when posting.

Connecting with others

Head over to our list of forums to find people who are in a similar situation, people at a similar stage of dementia or an information topic that interests you.

Here are some tips on how to post a reply or start your own discussion...

1. When you're in a forum, look for the blue "Post New Thread" or "Reply" buttons at the top or bottom of discussions






2. To start a discussion, type a title, add your message and choose 'Create Thread'.




3. To add a reply just add your message and choose "Reply"



---

Any questions?

If you have any questions about using Dementia Talking Point, you can email us on talkingpoint@alzheimers.org.uk or Use our Contact Form - we're here to help.

Saying hello

This is our welcome thread - the place many members start. Our volunteer hosts and regular members are here to say hello to you and to welcome you to our community.

Why not tell us a little about your experience and how you'd like Dementia Talking Point to help you?

Whatever you're facing today, we hope you find our community to be helpful and supportive.

Sophie :)
 

Hobbsey

New member
Jan 20, 2020
9
Hi everyone,
I am obviously new to the group. My mum was diagnosed with dementia around two years ago. My parents live a couple of hours from me, so I don't see to much of them. We spent Christmas together and I noticed a significant change in her. She still know who we all are, which is lovely. She gets very confused and frightened sometimes when in new surroundings.

I would really appreciate some advice on communication really. Our main mode is the telephone, which is incredibly difficult now. She is on a loop and keeps asking the same questions. Conversations are really difficult. I try to stay patient and move the conversation on. Does anyone have any tips and advice please?
Thank you
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,788
Yorkshire
Hello @Hobbsey
Welcome to DTP

I see you have started a thread of your own so members will most probably reply there

Would you be able to Skype (or whatever the latest tech is)

I found phone calls became just too much for dad eventually .. I tended not to ask questions as he just couldn't work out how to reply, and became frustrated

I would make statements and chatter on to him, with the odd closed question so he could feel he was conversing eg I'd tell him about a visit to the beach and say 'We always loved the beach in winter, didn't we' so he could just say yes or actually add something if he wanted

And I spoke much more clearly and slower than usual so he had some chance of grasping what I was saying
 

Peggy Rosina

New member
Jan 20, 2020
1
Hello, my name is Peggy Rosina. My mother in law has been diagnosed with Vascular Dementia. She is in the early stages now but we have noticed a decline since her partner died a few months ago. Her condition has worsened and is upsetting for all the family to see. She is 87 and currently lives in her own home which is far too big for her to manage so she wants to downsize. We have been taking her to see warden controlled flats in areas she likes but has remained very negative about them all although some were perfect for her. It's all very worrying. Anyway thank you for letting me join your group.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,676
Kent
Welcome to Dementia Talking Point @Peggy Rosina I hope you will find it helpful and supportive.

Your mother in law may wish to downsize but she could possibly be looking for a smaller replica of her own home. It`s hard for many to accept change, even if they want it, but those with dementia may find it even more challenging.

As long as your mother in law is relatively safe, I`d continue to visit assisted accommodation with her in the hope one day she will agree.

Sad to say, there may come a time when assisted living will be unable to meet her needs and residential care may be the best option so I wouldn`t hold out too much hope for a move just yet.
 

Dawniekins

New member
Jan 23, 2020
1
Hi, my Mum In Law has recently been diagnosed with Alzheimers. I am hoping to find out more of what help is out there as we are struggling a bit at the moment. Hopefully I will get some answers on here.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,078
Nottinghamshire
Welcome to Dementia Talking Point @Dawniekins

you’ve come to the right place for answers. When you’re ready ask away. In the meantime have a read around and you’ll probably get some good ideas on how to cope with most things.
 

woodbank

Registered User
Mar 27, 2019
10
Hi everyone,
I am obviously new to the group. My mum was diagnosed with dementia around two years ago. My parents live a couple of hours from me, so I don't see to much of them. We spent Christmas together and I noticed a significant change in her. She still know who we all are, which is lovely. She gets very confused and frightened sometimes when in new surroundings.

I would really appreciate some advice on communication really. Our main mode is the telephone, which is incredibly difficult now. She is on a loop and keeps asking the same questions. Conversations are really difficult. I try to stay patient and move the conversation on. Does anyone have any tips and advice please?
Thank you
Hi my mum has memory problems because of her Alzheimer's and having phone conversations is difficult. She can still read quite well so I send her letters with updates on how the family is doing and photos. She can keep these and re read them whenever she likes. Dementia affects everyone differently but it works for us.I hope you get some good ideas from this forum.
 

Alibear

Registered User
Jun 12, 2018
29
Devon
Hi, my Mum was diagnosed with vascular dementia and Alzheimers almost 2 years ago but looking back was probably showing clear signs long before that - as she lives alone we didn't realise how bad things had become. I have recently begun to visit this forum frequently and find it invaluable hearing everyones experiences and it helps knowing we are not alone in this journey!
 

HilsK

New member
Jan 24, 2020
7
Hi So good to find this forum. As a sole carer I have felt very isolated. My hubby was diagnosed with vascular dementia and epilepsy after he had a stroke back in 2008. Its such a strange disease as at times things can almost seem normal yet in the next moment its as if everything is falling apart. Recently he has become much more confused and his mobility has really deteriorated. He describes it as his brain isn't talking to his feet as he cant lift his feet up to walk and he stumbles badly. Part of his dementia is of course his resistance to using a walking stick let alone more useful walking aids which has led to falls and simply being stuck.

As this encroaches into the night when he's often wide awake and wandering around his bedroom and landing it has become a really exhausting 24/7 job which has taken a severe toll on my health in recent months ending up with me in hospital with pneumonia for 3 weeks including critical care. Nothing was put in place by Social Services while I was in hospital .. he was on his own at home which may have been what he wanted but took now account of his safety and vulnerability. He was frightened, confused and very alone.

When I was discharged I couldn't even look after myself never mind him. I was sat in a chair for three days unable to move ... It has taken over 3 weeks for any help to be put in place and has been the most frightening devastating upsetting time as I have tried to cope. Bless my hubby he tried so hard to 'look after' me. His heart was totally 'in it' but he coped by simply shutting out what was happening to me as he couldn't cope in his confusion It was utterly chaotic.

This has left me desperately frightened about my capacity to cope moving forward as they are are investigating other aspects of my health which are connected to all of this. I have had to really push ... demand a Carer's assessment Its a crazy situation. An Admiral Nurse from out of her area, and my consultant had to wade in on Safeguarding grounds in the end.

I have felt this last 8 months that my own health is taking a massive hit from the physical and mental exhaustion I feel. Has anyone any idea how I can move forward with any of this .. I would be so thankful for any advice.
 

marionq

Registered User
Apr 24, 2013
6,034
Scotland
@HilsK i am shocked you were released from hospital without care being put in place for you and your husband. The area you are in must be downright negligent. Now you have the Admiral nurseon the case I hope she can help.
 

HilsK

New member
Jan 24, 2020
7
Welcome to Dementia Talking Point @HilsK

I’m appalled that you were left to cope by yourselves. Thank goodness the Admiral nurse was on the ball.

If you are worried about how to ensure ongoing support for the future give the Alzheimer’s helpline a call. I’ve always found them to be helpful and knowledgeable.
 

HilsK

New member
Jan 24, 2020
7
@HilsK i am shocked you were released from hospital without care being put in place for you and your husband. The area you are in must be downright negligent. Now you have the Admiral nurseon the case I hope she can help.
She a fantastic committed lady who was not prepared to stand any nonsense for anyone!!! We do not have an admiral nurse in our area but she came so help us ... so thankful
 

HilsK

New member
Jan 24, 2020
7
It might seem crazy but I never thought that the alzheimers groups supported those with dementia ! I will make contact with them this week Thankyou
 

HilsK

New member
Jan 24, 2020
7
@HilsK i am shocked you were released from hospital without care being put in place for you and your husband. The area you are in must be downright negligent. Now you have the Admiral nurse on the case I hope she can help.
Sadly this area, Cheshire West and Chester, lies outside Cheshire East where the hospital we have to attend. The two authorities are independently funded and just don't seem to talk to each other. It creates all sorts of serious difficulties for so many in the situation we are in.
 

PaulEd

Registered User
Feb 2, 2020
20
Worcestershire
Hello

I'm Paul. Our family learned that my mother had Alzheimer's just over a year ago. We'd suspected for 2 -3 years, checked the signs with information on the internet to try to understand whether it was 'normal aged related' loss or Alzheimer's. Ultimately we decided to take action in September 2018 by getting her GP to call her in under the pretext of something else -as we have already set up POA . It took a further four months before she was diagnosed.

Our mother still lives independently but we concerns about her eating habits- not eating enough in our view - and other things, where we need now to start talking to those have similar experiences. So, i will continue on other relevant threads.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,089
68
Dundee
Welcome to the forum @PaulEd. I’m sorry to read about your mother’s diagnosis but I’m glad you’ve found the forum. I know you will get lots of help and support here.
 

Princess Anne's Dog

New member
Feb 10, 2020
1
Hello, I just joined yesterday. My mum has mixed vascular dementia and Alzheimer's, she was diagnosed in 2017. My wife and I live with mum and are her carers. I will keep reading the threads as they are very helpful, and maybe post again in the future but I just wanted to say hi.
 
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