• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Welcome to Talking Point - introduce yourself here

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tiggertastic

Registered User
Feb 18, 2018
44
colne
Hi this my first time although I have found browsing the forums these last few months very helpful and sort of comforting, making me feel less alone. My husband of only 5 years was finally diagnosed last summer with early onset alzheimer's and today I am ashamed to say I finally had a meltdown in the council offices. OMG!!! Sorry just needed to tell somebody.
know just how you feel hun i did the same thing at work i have gone from a woman who would not cry and was generally in charge of her emotions to an emotional cripple and it is uncontrollable which is worse so when it happens i try to find myself a place on my own andlet rip then gather myself together until the next time and do not beat myself up about it we are after all only human take care xx
 

Jangoose

New member
Apr 6, 2018
2
Birmingham
Hi my name is Jan & am new to this site. I have concerns about my 94 year old mother living in a residential care home with dementia residents. Mom is not suffering from dementia but one male dementia resident wanders into her bedroom at night and although he seems harmless this does disturb my mothers sleep and upsets her greatly, I have made a formal complaint but this keeps happening, and although I have been assured this will stop it seems the owners have little concern about this, any advise on a way forward would be welcomed. Regards Jan
 

nellbelles

Volunteer Host
Nov 6, 2008
8,562
leicester
Welcome @Jangoose to TP
Wandering in CH’s for people who have dementia is quite common but if it is causing your mother upset I would expect it to be dealt with fairly quickly.
Could you arrange a meeting with the CH manager and see if a face to face meeting can help resolve this?
 

nae sporran

Volunteer Host
Oct 29, 2014
6,362
Bristol
Welcome to TP @Raindancer11. Not sure what to advise as you have applied for care needs assessment, and they do unfortunately take a month or two. Have you applied for a carers assessment for yourself as you seem to be caring for your mum and your brother to some degree. You may need to wait a month or two, but it may be good to put yourself on the social services radar.
If you can post on the forum I care for a person with dementia, https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/ is the shortcut, you should get more advice from the always helpful people here. Just click on POST NEW THREAD in the top right corner of the list.
Best wishes,
Rob
 

Jangoose

New member
Apr 6, 2018
2
Birmingham
Welcome @Jangoose to TP
Wandering in CH’s for people who have dementia is quite common but if it is causing your mother upset I would expect it to be dealt with fairly quickly.
Could you arrange a meeting with the CH manager and see if a face to face meeting can help resolve this?
Welcome @Jangoose to TP
Wandering in CH’s for people who have dementia is quite common but if it is causing your mother upset I would expect it to be dealt with fairly quickly.
Could you arrange a meeting with the CH manager and see if a face to face meeting can help resolve this?
Hi Nellbelles thanks for reply. I have put complaint in writing and also had a talk with CH manager with myself and mother they have put alarm mats on his door but they are no good at alerting staff my mother has to press her buzzer each time and staff then guide him out of the room but then my mother is left awake and upset, they are doing another mental assessment on him but things are moving very slowly and mom is getting more upset. I have told them that this is not acceptable but don't know where to go from here other than this she is happy there and does not want to move as others have done, just don't know what else to do. Regards Jan
 

RustyMemory

New member
Apr 7, 2018
2
Hi. New member here. Concerned about recent events with my parents. Will post more in the relevant sections. Hope to give as much as I get :)
 

karaokePete

Registered User
Jul 23, 2017
5,115
N Ireland
Hi. New member here. Concerned about recent events with my parents. Will post more in the relevant sections. Hope to give as much as I get :)
Hello and welcome to TP. I see you have already started a new thread of your own so I'm sure you will soon find that this is a friendly, informative and supportive place.
Keep posting but also have a good look around the site as I did that when I joined. I found that the forum was a goldmine.
 

dolly day dreamer

New member
Apr 7, 2018
2
afternoon, My mother in law is just waiting to see what kind of dementia she has, she is 80 years old. We think she may be in mid stage dementia as my father in law may have covered her illness until he died 2 years ago and as she is now talking to people that she can see but we can't, talking a lot to her dead relatives as in having proper conversations with them. also she is very sly, talking to other people saying we are not being kind to her and that we have taken things of her. I share her care as it is too much for me as i am trying to hold down a job too, she has told me that she does not want to be anywhere else but here with me but to be honest I just can't cope. she is very rude and naughty for the other people that look after her and they are relatives to her so cannot understand why she is like this. I feel like my life is over as she could live like this for many years. i do no want to look after her full time but feel this is the road it will go down. How and when will she be able to go into a home as she does not have any savings and lives of her pension.
 

nellbelles

Volunteer Host
Nov 6, 2008
8,562
leicester
Hi @dolly day dreamer welcome to TP..
The actions of your MIL sound typically of this devastating illness, I hope the other relatives sharing her care with you can understand that, and be aware it is the illness that is making her act this way.
Maybe it would help to contact SS and ask for a care assessment for your MIL and a carers assessment for yourself, these assessments are an entitlement but you may have to push to get them
TP is a welcoming forum and a good place to find information I hope you will continue to post.
 

DeMartin

Registered User
Jul 4, 2017
711
Kent
afternoon, My mother in law is just waiting to see what kind of dementia she has, she is 80 years old. We think she may be in mid stage dementia as my father in law may have covered her illness until he died 2 years ago and as she is now talking to people that she can see but we can't, talking a lot to her dead relatives as in having proper conversations with them. also she is very sly, talking to other people saying we are not being kind to her and that we have taken things of her. I share her care as it is too much for me as i am trying to hold down a job too, she has told me that she does not want to be anywhere else but here with me but to be honest I just can't cope. she is very rude and naughty for the other people that look after her and they are relatives to her so cannot understand why she is like this. I feel like my life is over as she could live like this for many years. i do no want to look after her full time but feel this is the road it will go down. How and when will she be able to go into a home as she does not have any savings and lives of her pension.
You and other family members do not have a legal duty of care for mil, it’s nice if family can pull together but very often one person gets to do it all, willingly or not. Get SS involved as soon as possible, accept any help offered.
 

Unasmum

Registered User
Jan 6, 2018
20
UK
Hi I am new member. My maternal grandmother had dementia, her eldest daughter, my aunt 97, has dementia and her youngest daughter, my mother 87, is under the care of the Memory Clinic for memory 'issues', although she does not have a diagnosis. My aunt is now in a residential home and I have had a difficult time with funding issues and finding my way through the labyrinth that is the Social Care system. My mother's memory is going downhill fast but she is fiercely independent and fighting every inch of the way. Fortunately she lives just 5 minutes away as I have to visit several times a day to check she is safe but she refuses to accept that she has a problem. I am a 'bully' for trying to get her to give up driving and am robbing her of her independence by 'fussing' over her. I just need somewhere to go for support and advice.
 

karaokePete

Registered User
Jul 23, 2017
5,115
N Ireland
Hi I am new member. My maternal grandmother had dementia, her eldest daughter, my aunt 97, has dementia and her youngest daughter, my mother 87, is under the care of the Memory Clinic for memory 'issues', although she does not have a diagnosis. My aunt is now in a residential home and I have had a difficult time with funding issues and finding my way through the labyrinth that is the Social Care system. My mother's memory is going downhill fast but she is fiercely independent and fighting every inch of the way. Fortunately she lives just 5 minutes away as I have to visit several times a day to check she is safe but she refuses to accept that she has a problem. I am a 'bully' for trying to get her to give up driving and am robbing her of her independence by 'fussing' over her. I just need somewhere to go for support and advice.
Hello and welcome to TP. I'm sure you will find this a friendly, informative and supportive place.
I see you have started a thread of your own already and I'm sure you will get help.
Apart from that do have a good look around the site for information as it's a gold mine. With regard to communicating with your mother you may find this tread useful, good luck:-
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
 

Dmb219

New member
Apr 7, 2018
1
Hi I have a mother with dementia. She moved in with us 6 weeks ago. She is very confused daily. I'm trying to find her activities to do so she doesn't feel bored. It's a terrible disease to watch someone go through. I am her care taker, as I have no siblings. I hope to get information from this sight.
 

carolynp

Registered User
Mar 4, 2018
569
Hi I have a mother with dementia. She moved in with us 6 weeks ago. She is very confused daily. I'm trying to find her activities to do so she doesn't feel bored. It's a terrible disease to watch someone go through. I am her care taker, as I have no siblings. I hope to get information from this sight.
Hello @Dmb219 and welcome. I joined this forum only last month and already I have found so much helpful information to assist me in caring for my partner with dementia.

Others with much more experience than I will have more to offer you than I can. You will, I am sure, hear from them soon! One of the features of Talking Point is that its contributors live all over the world, so there is always someone awake at any hour of the day or night.

I hope and trust that you will find a home, here as I have done. Dementia is a huge challenge for everyone who is touched by it. But the journey is made somewhat less arduous by having friends who understand, as the people who post on TP do, and who are always ready and willing to lend a listening ear.

Good luck with your mother. Help is at hand. You are not alone.
 

karaokePete

Registered User
Jul 23, 2017
5,115
N Ireland
Hi I have a mother with dementia. She moved in with us 6 weeks ago. She is very confused daily. I'm trying to find her activities to do so she doesn't feel bored. It's a terrible disease to watch someone go through. I am her care taker, as I have no siblings. I hope to get information from this sight.
Hello @Dmd219, welcome to TP.
You will find this a friendly, informative and supportive place. Please do take a good look around the site as you will find it a gold mine for information. I did just that when I first joined and think the site is fantastic.
If you have a specific question or just wish to vent feelings please feel free to start your own thread as people will see it and reply.
Good luck to you and your mother.
 

Raginia

New member
Apr 8, 2018
1
Hi I'm new on here
I desperately need advice on my partners mother she lives in her own home has care coming in although she hates them she's a very confused lady getting worse even the carers have noticed her deterioration in health hygiene she now has figures which she sees at night hence she goes to bed with her handbag wrapped round her arm she says 'she ' is coming stealing from on her she is here all day look at her my partner is at the bottom with everything that is going on she does not eat properly she's insulin dependent but cannot see properly we did have nurses coming in for that but not any more they said she is fine she is not fine been in hospital for her high potassium level a few times the last time was a few weeks ago she had an episode had to go to hospital consultant was very surprised she is not in a care home but we explained she's quite nasty especially to her son very venomous to him neighbours say she should be in a home she is defo not safe in her home
She has not been diagnosed with anything because she don't want any doctors to the house she won't go to any appointments hospital anything always on about this 'she ' is doing stuff in the house we gabe been called out to her house all times of the day night something has happened left the tap on phones broke alarm on and it's always the 'she ' has done it not her my partner is at his wits end so upset and angry because she will not listen does not even know the time of day or which day it is does not know about money even giving money away to strangers she is not safe can hardly walk around the house let alone wash herself have a bath eat any hot food she eats old food then she's ill has bowel problems quite a lot more now she is always saying she is scared living on her own getting very angry with this 'she' in the house all the time moving stuff doing stuff
What can we do please we need help desperately
She is known to social services as an at risk due to times she has been in hospital
What can we do everyone says she needs to be in a care home for her safety and for everything because she cannot talk very well either
 

karaokePete

Registered User
Jul 23, 2017
5,115
N Ireland
Hello @Raginia, welcome to TP.
May I suggest you phone the help line in the morning to see if you can get help if you don't hear from someone with experience first
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm
 

Soltice

Registered User
Jul 3, 2017
9
Leicester
Hello everyone I joined here some months back but I have only just dropped by to make my hello post, its taken a while because I didn't know what to say so here goes. My mum started to go very strange in 2004 after my dad died and slowly over the years its been getting worse. I'm certain it's dementia and its come to such a point where I just need support from someone. Mum thinks I'm the problem and won't accept professional help. It started with her talking to herself and loosing her sense of humour to now where she is a jekyll and hyde character which is the only way I can explain it. I'm at my wits end as i have had accusations of going out all night to letting people into her house at night when she is in bed. I'm in my 40s but she treats me like I'm 15. She gets very forgetful and confused and irritated when i try to help. Its at a point where I don't know what i am coming back to every night.
 
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