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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
2,316
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 :)
 

kishaa

New member
Jun 19, 2020
1
Hi Everyone!!
i'm a newbie to this forum. Thanking you for making me a part of your forum.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,998
Bristol
Welcome to the forum @kishaa. You will find advice and support here, so whenever you feel ready than tell us more about yourself on this thread or start a new one.
 

Andreana

New member
Jun 19, 2020
1
Hello.I joined today as im new at finding out as much as i can about alzheimers and dementia. My husband was diagnosed with early onset alzheimers on March 19th 2020. We had the diagnosis on the telephone as tge appointment at the memory clinic was cancelled due to the onset of covid 19 lockdown.To say it was a shock would be inaccurate but to hear the results of his m.r.i. scan described as global shrinkage and my having to ask if it meant he has alzheimers or dementia was huge. We sat in our lounge with the phone on loudspeaker listening to the consultant. He said he hoped we could meet up soon to discuss things in more detail and finushed by saying there would be a prescription waiting in reception for me for medication for 2 months. He also said he was passing us to the memory clinic who would be dealing with thingz from now on. I was told the Carers Trust would visit us and that was it. He told ne there would be a council tax relief form with the prescription and that we should inform d.v.l.a about my husbands condition. He is happy to recommend him fit to drive and that ended our telephone consultation and life changing diagnosis of early onset alzheimers. We couldnt go to our children to share it we just had to inform them by phone. I eventually telephoned the memory clinic and made contact with them. I was told a prescription for another 3 months medication would be ready for picking up any day unless my husband had side effects from the memantine. A lady phoned from carers trust to introduce herself and she informed me theres a group we can meet with monthly after covid settles down. So i have been doing my own research and finding out as much as i can to enable us to adapt to the new normal for us. Very glad to be involved with alzheimers.org.uk.
 

karaokePete

Registered User
Jul 23, 2017
5,571
N Ireland
Hello @Andreana, you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,998
Bristol
Welcome to the forum from me too, @Andreana. It is a lot to take in and adjust to, with the Virus and lockdown as well. You will find a lot of knowledgeable people here and those factsheets have links to others. I would recommend the carers support groups too, and hope you can get along to some as early as it's safe to do so.
 

nicsunshine

New member
Jun 23, 2020
1
Hello all! I'm Nicolette but I often go by Nic. I'm 39.

I'm so glad i finally got myself to sign up to this forum. I have been missing the monthly carers' support group I try to attend and it suddenly dawned on me that I had a leaflet about an online version somewhere!

I care for my mum, Marilyn, who is 74. It is about 2 and a half years since her diagnosis of vascular dementia but the consultant who diagnosed it didn't get a 'dementia marker' put on mum's medical record and so the diagnosis letter was sent to mum's address and promptly lost without a trace. It was only in October last year that we found out what had happened and got a formal diagnosis over the phone from mum's new GP. At that point we were finally referred to the dementia wellbeing service who have been wonderful.

These past few weeks have been really intense, caring-wise. I've been on the phone most days with social worker and care agency to finally get care in 30-45mins per day - it has been an epic effort to get us to this point (long story!). Then settling the carer in and trying to keep mum on side and feeling positive about having care. Some differences of opinion about the care in the family, which has been really tough to navigate.

Keeping mum's spirits up during lockdown has been really tough especially as she doesn't fully understand what is happening and why she has to stay indoors.

I think mum's having a drop in function this past week or so. She seems really different, like her needs have suddenly changed. Because she's gone on so long without care and medical input (don't get me started!) it's hard to know if it's an infection or just a vascular dementia dip before a plateau. Lots of phonecalls and reassurance with mum at the moment. (I have always been mum's carer since childhood, before the dementia, due to mental health and leg problems and it is a complicated relationship). It's one of those phases where it's hard to feel like I have any kind of life outside caring for mum. I'm not working due to my own ill health and caring for mum takes all my energy and sometimes makes my own health condition worse. Thankfully I am having a better phase,health wise, and I am allowed to meet with friends and visit parks, so I feel like have a life outside of mum again!

Thanks for the warm welcome :)
 

canary

Registered User
Feb 25, 2014
12,934
South coast
Hello @nicsunshine and a warm welcome indeed :)
Its nice to meet you and hear about your mum. Do have a mooch around the forum and feel free to join in the conversations - we are a friendly bunch! If you want to talk about anything specific, or ask a question, its usually best to start a new thread in the appropriate section, otherwise it doesnt always get seen by so many people.
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,337
69
Dundee
Hi @nicsunshine and welcome from me too.

I'm glad you've found the forum and I know you will find lot of help and support here. As @canary says people often start a thread in the appropriate area of the forum. It's a handy way of keeping all of your thoughts and responses together.

You might want to start one in this area - I Care For A Person With Dementia.

If not, that's ok - as long as you keep posting!
 

nellbelles

Volunteer Host
Nov 6, 2008
8,793
leicester
Hello @nicsunshine and a warm welcome to DTP From me also amidst such difficult times as We are all facing...
I don’t envy anyone faced with hands on caring at this moment
I’m pleased you have instigated carers for your Mum Before your health suffered to much.
I hope now you have found the forum you will continue to post to share your experiences and to gain support
 

Sac22

New member
Jun 23, 2020
1
Thanks for adding me. I help look after my dad who has Alzheimer’s. He was diagnosed 5 years ago.
 

miffell

New member
Jun 26, 2020
1
hi, my dad has dementia and the last few weeks has become very annoyed and rude and really nasty to my mum who looks after him ,we have been over there today most off the day doing bits to a little boat we bought , he said to my mum isnt it about time they went home ! he does nothing around the house just sits on a kitchen chair and does puzzle books , i have been in contact with his dr and he told me my mum needs to contact him direct , my dad is 80 i dnt feel he should be driving but he still is drs anwser was if your mum is happy he is driving thats ok . I feel like what i think doesnt matter . Ive tried speaking to my mum today to get her to ring drs but i know she wont i feel im banging my head against the wall
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,621
Nottinghamshire
Welcome to Dementia Talking Point @miffell

Everything you describe is typical behaviour for someone with dementia. Perhaps you could persuade your mum to employ a cleaner or home help to do some of the household chores now that your dad won’t help anymore. He’s probably finding it difficult to do these things now.

Does your mum drive? If your dad is the only driver in the household I can understand why she doesn’t want him to stop. It’s never easy to take the independence of driving away from someone. Ironically my dad temporarily became a safer driver when he first had dementia. He’d been an arrogant and inconsiderate driver before and dementia made him more hesitant until his abilities declined and he became unsafe once again.

If you really feel your dad shouldn’t be driving you can tell the DVLA yourself - anonymously.
 

Rabia

New member
Jul 1, 2020
1
Hi. I’m hoping for some support mainly but advice is more than welcome, Although I feel that I am powerless to improve our situation now. I’m sorry that this may be long winded despite trying to keep my introduction short!
My mum was diagnosed with early onset Alzheimers in August 19. She’s 74yrs. We had noticed that she had memory Issues for many years prior to diagnosis and She was also having paranoid thoughts/delusions since her late 60’s.
I’m her third daughter (she has 4 daughters) and I am the only one in the country. In fact, I’m the only person, a long with my husband and 2 adult children, that my mum has to call on. She has no friends and no other family.
Unfortunately, mums had delusions concerning me, resulting in her refusing to talk to me or having anything to do with me and my family full stop. When she talks to my Little sister, she becomes very angry when speaking about what she believes I have done and it is impossible at
times to get her off the subject.
I have not got power of attorney, no one has. I have been communicating with her doctor, pharmacist, care coordinator and practice nurse since her diagnosis last year about all of our concerns (she is not taking her medication correctly, is isolated and has not coped well in society during lockdown putting herself at risk, miss managing money/purchases etc)
A long story a little shorter (apologies) Mum has totally ‘washed her hands’ of me and her grandchildren. She’s had no home visit/assessment due to Covid and we have lost any chance of having any sort of relationship with her due Lack of support. I have been telling the team involved with My mum of difficulties in communication etc between us but I have still been asked by them (frustratingly) to remind her of her appointments (which she is not attending) gain power of attorney and take her car keys off her!
I am no longer attempting to phone mum because she is extremely unpleasant towards me. She doesn’t answer the door when I go to her home (with my husband to due how she is with me). In a nut shell, I have lost my mum and she has ‘unknowingly’ put herself in a difficult situation.
I’ve heard this is a common situation. And I understand that mental health services are over stretched (I’m a nurse too) But I feel totally let down by everyone at her Gp practice. I feel very alone although I am sure I am not.
Thank you for reading X
Rabia
 

GeraldineF

Registered User
Mar 22, 2012
2
Hi there - not sure I'm writing this in the right place but can't seem to find how to start a new thread. Haven't been on the forum for a while. Our mother has vascular dementia and has been in a lovely care home for nearly seven years now. We finally have an appointment to see her (last saw her on March 12th) on July 15th in the garden with a carer and a 'facilitator'. However I am at a loss as to what we can do to make Mother feel comfortable. My sister and I visit together and she rarely recognises us so with compulsory face masks, she is going to be even more bewildered. We can take nothing in so the homemade cake I normally bring to start the proceedings off is out. She has no conversation at all now and finds it difficult to focus when another person speaks to her at the best of times. Perhaps we should have a sing-song? I'm hating the thought that she won't be able to see us smiling at her, and the fact that we won't be able to hug her or hold her hand. She has always been a very tactile person and we don't want the visit - the first after so long - to be distressing for her. Any ideas anyone?
 

lemonbalm

Registered User
May 21, 2018
417
Hi there - not sure I'm writing this in the right place but can't seem to find how to start a new thread. Haven't been on the forum for a while. Our mother has vascular dementia and has been in a lovely care home for nearly seven years now. We finally have an appointment to see her (last saw her on March 12th) on July 15th in the garden with a carer and a 'facilitator'. However I am at a loss as to what we can do to make Mother feel comfortable. My sister and I visit together and she rarely recognises us so with compulsory face masks, she is going to be even more bewildered. We can take nothing in so the homemade cake I normally bring to start the proceedings off is out. She has no conversation at all now and finds it difficult to focus when another person speaks to her at the best of times. Perhaps we should have a sing-song? I'm hating the thought that she won't be able to see us smiling at her, and the fact that we won't be able to hug her or hold her hand. She has always been a very tactile person and we don't want the visit - the first after so long - to be distressing for her. Any ideas anyone?
This is tricky. Other members may have good ideas on how to make the visit work but I wonder if you actually think it will do your or your mum any good? I took the decision not to visit when my mum's care-home said we could, as I felt the unfamiliarity of it all - the distance, the mask, no physical contact, would distress her. Do you feel that your mum needs you to visit?
 

Birdie45

New member
Jul 2, 2020
3
Hello everybody, I have been reading posts for a week or so and have finally plucked up courage to register and introduce myself...
My dad has mixed dementia (provisionally diagnosed following MRI scan during emergency hospital stay during lockdown) . he has been living in what seems a very nice dementia-led care home, with an experienced care-team, for about 8 weeks now. We were Fortunate that we were able to choose the home that he moved to from hospital.
i Have seen several threads where loved ones ask to “go home”, but dads situation is slightly different in that he is demanding/begging my sister and I to “get him out of there”, saying that he is being intimidated by staff, is subject to threats of violence, being forced to sleep on the floor etc etc. I do understand that delusions are common with dementia but do not know how to manage those conversations as they do not seem to help calm or reassure him. It is further complicated by the fact that he is very deaf and has lost his hearing aids again.
Consequently, my sister and I have put speaking to him on hold for the time being. We phone and speak to staff who will pass on a message and I am writing a card and enclosing various photos each day. Staff tell us that his moods vary and that his behaviour is all normal for dementia. If you have any suggestions for us I would be very grateful. We just want to do whatever is best for dad, even if that means it is difficult for us. Thank you!
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,621
Nottinghamshire
Welcome to Dementia Talking Point @Birdie45

The staff are correct in saying your dad’s behaviour is common for someone with dementia, as are delusions, but I can imagine how distressing it is for you and your sister as well as your dad.

As “his moods vary” have you asked the staff how much of the time your dad seems distressed. If he gets worse in the afternoon/evening this is very common and known as “sundowning”. It would probably happen in his own home too.

My mum suffered the delusion that one of the doctors while she was in hospital was out to get her and nothing we said could convince her otherwise but it did eventually pass. I think it was the clipboard he carried that upset her.

Sometimes saying that you will sort the situation out is enough to calm the PWD...even if there is nothing to sort. I think it’s worth talking to the staff to see if there is any one who your dad trusts who is willing to do a bit of play-acting and “sort out” the “bad” people for him and make him feel calmer.

Sometimes medication may be needed as a last resort.
 
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