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

[SophieD]

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"

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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

 

[kellogs1970]

hello everyone, dementia is new to me. My mum has been confirmed by our doctor as having dementia, caused by previously having strokes over 15 years ago.
my mum has been living with me and my husband since january 2020, up until then she lived with my dad who passed away with liver cancer in the january so mum came to live with us.
She was only diagnosed with dementia about 3/4 months ago.
it has been quite a struggle, mum seems to struggle with short term memory loss and im struggling with trying to encourage her to eat and drink.
she was admitted to hospital on Christmas day with dehydration and vertigo. she weighs just over 6 stone. she has always been a slight woman but never this weight. i am sure part of it is grieving for my dad.
any help would be welcome, ie are there any groups or organizations i should get in touch with for help or advice. i really dont know where to start.
the doctor wasnt particularly helpful he just said that under normal circumstances (pre covid) he would have referred mum to a specialist but all he could recommend was going to this website!
thanks in advance

 

[JWsouthsea]

Hi, my name is Jackie , my husband has mixed dementia and has recently been released from hospital after surviving covid. Since he has been home he can't sleep at night, restless, confused, and it means that I am surviving on only having 2 hrs of sleep a night. I would welcome any suggestions of people going through the same or similar and any tricks, tips.

 

[Cat27]

hello everyone, dementia is new to me. My mum has been confirmed by our doctor as having dementia, caused by previously having strokes over 15 years ago.
my mum has been living with me and my husband since january 2020, up until then she lived with my dad who passed away with liver cancer in the january so mum came to live with us.
She was only diagnosed with dementia about 3/4 months ago.
it has been quite a struggle, mum seems to struggle with short term memory loss and im struggling with trying to encourage her to eat and drink.
she was admitted to hospital on Christmas day with dehydration and vertigo. she weighs just over 6 stone. she has always been a slight woman but never this weight. i am sure part of it is grieving for my dad.
any help would be welcome, ie are there any groups or organizations i should get in touch with for help or advice. i really dont know where to start.
the doctor wasnt particularly helpful he just said that under normal circumstances (pre covid) he would have referred mum to a specialist but all he could recommend was going to this website!
thanks in advance

Welcome to TP @kellogs1970
This is a great place for help & support so have a look around & please keep posting.

 

[lemonbalm]

hello everyone, dementia is new to me. My mum has been confirmed by our doctor as having dementia, caused by previously having strokes over 15 years ago.
my mum has been living with me and my husband since january 2020, up until then she lived with my dad who passed away with liver cancer in the january so mum came to live with us.
She was only diagnosed with dementia about 3/4 months ago.
it has been quite a struggle, mum seems to struggle with short term memory loss and im struggling with trying to encourage her to eat and drink.
she was admitted to hospital on Christmas day with dehydration and vertigo. she weighs just over 6 stone. she has always been a slight woman but never this weight. i am sure part of it is grieving for my dad.
any help would be welcome, ie are there any groups or organizations i should get in touch with for help or advice. i really dont know where to start.
the doctor wasnt particularly helpful he just said that under normal circumstances (pre covid) he would have referred mum to a specialist but all he could recommend was going to this website!
thanks in advance

Hello @kellogs1970

Sorry to hear that your are struggling (it's not easy!) but you will find lots of support and advice here. Do you have any carers coming in to help with your mum at the moment? I wonder if they may be able to help with the eating and drinking. Sometimes a person in a uniform can be more persuasive with these things. I remember when I was looking after my mum that she would only eat and drink if I did so at the same time. I think she had possibly forgotten how to do things, so seeing me do them helped (also I don't think she knew if she was hungry or needed a drink so needed that prompting). If you haven't tried that, it is definitely worth a go. Also, if your mum struggles with cutlery, finger food can be very useful.

You might want to start your own thread in the "I care for a person with dementia" forum when you are ready. In the meantime, the following links might help you find some support. Things aren't running as well as usual in the current situation but hopefully some useful information for you.

Your local dementia support services

We are here to help. Find out more about the type of dementia support services available in your area.

www.alzheimers.org.uk

Assessment for care and support in England

What are care assessments and how can people with dementia and their carers access them? This information is for care and support in England.

www.alzheimers.org.uk

 

[Cat27]

Hi, my name is Jackie , my husband has mixed dementia and has recently been released from hospital after surviving covid. Since he has been home he can't sleep at night, restless, confused, and it means that I am surviving on only having 2 hrs of sleep a night. I would welcome any suggestions of people going through the same or similar and any tricks, tips.

Welcome to TP @JWsouthsea
Personally, I would contact the GP & ask if there is any medication that will help.
Please keep posting as you’ll get lots of support here.

 

[lemonbalm]

I agree that contacting your husband's doctor is the best idea @JWsouthsea . Your husband is probably more confused than usual after being ill and in hospital. I suppose he might settle after a while but perhaps the doctor can prescribe something to help with agitation and anxiety (I am forever suggesting anti-anxiety medication on here but it can make a big difference). Don't hesitate to tell the doctor that you are only able to get 2 hours sleep at most, and are at the end of your tether. Good luck. Let us know how things go.

 

[GailLLW]

Hi All.
My name is Gail and I'm looking into Dementia as my 85yr old mum has been diagnosed with Vascular Dementia. My 86yr old dad has also been diagnosed with Mixed Dementia (Alzheimer's & Vascular). Short version- they split up 20yrs ago, myself & 2 of my 3 brothers live over 2hrs away from both our parents & taking it in turns to visit as often as we can due Covid & other restrictions plus distance. As a family we have very little knowledge of Dementia & how to cope. I'm looking at trying to find as much information on how to cope with Dementia, how to interact with both my parents. At the moment mum is convinced she wants to go home. She's in a place she's lived in for 20yrs, prior to that is the house we as a family were in for over 35yrs, prior to that I wasn't born so have no knowledge of that house. I've asked my eldest brother who thinks it could be the place they first had as a couple.
I hold the LPOA for mum on both counts but have no clue on how/where/when they would be needed or used....
Any help would be gratefully received, any website,pamphlets groups etc THANKS

 

[lemonbalm]

Hi @GailLLW

It's tricky caring from a distance. You will find lots of information, support and advice for you here. There is probably more useful information about dementia on this website than any other!

A link to all the publications from the website is below, so that you can pick and choose which to look at. You can also type a subject into the search bar at the top of the page and it will take you to existing threads on that topic. You can also start your own thread on any subject you are wanting help with. Lots of us out here to help you along so don't be afraid to ask.

Print and online publications about dementia: Full list

Here, you will find our full list of publications that you can download or order as printed copies.

www.alzheimers.org.uk

 

[Sarasa]

Hi @GailLLW and welcome to Dementia Talking Point. Wanting to go home is very common in people with dementia and it is often not a real physical place they want to go to, but somewhere where they can leave the confusion of dementia behind. When my mother was in an earlier stage of dementia she actually said to me 'I keep on wanting to go home, but that's silly because I am home.'
If you have LPOA I think the first thing would be to make sure you have access to your mother's bank accounts to check her finances are OK. Mum could still use her account, but checking up to see out going etc was very useful. I'd also ensure that all bills were being paid by direct debit so that you don't get problems with them not being paid on time.
You might find starting your own thread on the 'I care for someone with dementia' forum means you have more people answering your queries.

 

[kellogs1970]

Welcome to TP @kellogs1970
This is a great place for help & support so have a look around & please keep posting.

Thank you for the reply, and yes i am going to have a good look around x

 

[Edel]

Hello I’m new

 

[Robert b]

Hi is robert my dad has dementia and I am a carer for him at home my mum had a stroke about 6 years ago and I was a carer for my mum and my dad was diagnosed with alzheimes .and he left to long i spotted the signs of it but it got worse and did point it out to him but he was very stubborn i found at the hard way he got violent with me got pushed in face and head butt but I am lost my dad mental of the alzheimes and I had to put my mum in a care home my dad is on the medication I still have problems and dont sleep at night all that well I sometimes scared to sleep at night I felt alone I no now I can have the support for myself that's why i have just started to be a new member just today. Just what the help and support and talk about yes I do get emotional sometimes on my own not in front of my dad. Sorry I get a little upset now I will leave it at that.

 

[Louise7]

Hello @Robert b welcome, you'll find lots of friendly advice and support here. It sounds like you are having a difficult time so please keep posting, and if there is anything specific you would like support or help with just ask. You mention that your dad has been violent, is this still happening now that he is on medication? If so, contact his GP to ask for a medication review, and think about speaking to your own GP about your sleep problems. You may also want to give the Dementia Connect Support line a call as the friendly and helpful advisers will be able to point you in the direction of help and support available in your local area:

Dementia support services

Alzheimer's Society provides help and hope to anyone affected by dementia. Call our support line, join our online community, find support in your local area or get dementia information.

www.alzheimers.org.uk

 

[Izzy]

Hello I’m new

Good morning and welcome to the forum.

Once you’ve had time to have a look around and browse the threads you might consider starting a thread of your own. This would allow us to know more about your situation and how we can support you.

I’m glad you’ve found the forum and know you will get lots of help and support here. There’s always someone here to listen.

 

[Saddaughter]

Thank you, I hope I can find reassurance, and give reassurance where needed. 6years ago I moved in with my mum when her Alzheimer's became worse and she couldn't care for herself, last April she unfortunately broke her hip, after a few weeks hospital stay the OT visited me and I was informed that in mum's current state she wouldn't be able to come home, so she went into a care home, shortly after she fell there and broke a wrist, she has never had an aggressive bone in her body, but 2 weeks ago another resident told her to shut up and put a blanket over her head, this must have been distressing for her, but now I find because she is agitated they have increased her meds,,( what I thought was anti- anxiety meds or sleeping pills) I rang last night to see how she was improving, as I think she's probably confined mostly to her room until she improves, I asked the name of her meds and was horrified when she said " Risperidone", I am beside myself with worry, can't sleep, blood pressure up too high, I've been trying to get mum home, safeguarding are involved due to the incident, and deprivation of liberty chap is now involved, has anyone here successfully got their parent back home, I don't imagine mum has long left and I promised she would always be in her own home, surrounded with her own things, please give me hope that it's possible. ( apparently, the reason they are stalling is that she may need 2 people to assist at night and there's only me, ) thank you for reading this.x

 

[Weasell]

What a sad tale.

Hopefully someone will come along with more direct experience of removing someone from care.

Would it be an idea to push for mum to come home to you for a weeks ‘ holiday’?
Sometimes however much love is there, it just isn’t possible to give the person the care they need at home, on the other hand it may be just what your mum needs ? Would that be one way to find out ?
Do they think two people may be required for moving and handling or because of potential challenging behaviour?

Every individual is different but I would imagine there are a fair few carers on this forum still caring for someone five years after they imagined they didn’t have long left?
The lack of visiting and communication this year has been heartbreaking for many.
TIp!
Next time you post it may be worth giving you post a title, for example ‘ removing a parent from care’ this way you will catch the eye of someone with an interest in that area ?

 

[Louise7]

Hello @Saddaughter welcome to the forum but sorry to hear of your circumstances. Do you have health & welfare power of attorney for your mum? It's good that the safeguarding team are now involved, and you might find it helpful to contact the Dementia Connect support line as the advisors will have knowledge of the type of situation your mum is in and will hopefully be able to provide you with some advice relating to the best way forward (they are open at weekends): https://www.alzheimers.org.uk/dementia-connect-support-line

 

[Lezah]

Thank you. My husband was diagnosed with Alzheimer’s three years ago. I love him so much but I find myself contradicting him when I know the problem is with the disease not him. It makes me feel so guilty and depressed. Lockdown has removed all the support organisations and I honestly feel that the stress of living with him is killing me. I just don’t think I can cope much longer. Each day brings an endless cycle of anxiety, anger, fear, guilt and resentment. Sorry to sound so negative!

 

[Izzy]

Welcome to the forum @Lezah. I’m sorry you are having such a tough time.

I’m glad you’ve found the forum and it’s great to see you have started your own thread. I know you will receive lots of understanding and support here.