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

[Mark_W]

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.

Mark

 

[Bunny2Bear]

Hello.....I'm a new member. My husband has been diagnosed with Early Onset Alzheimer's and I have joined this group to see how other people are dealing with similar situations.

 

[nae sporran]

Welcome to the group Bunny2Bear. You will find plenty of support and advice here. If you type your postcode into https://www.alzheimers.org.uk/find-support-near-you you may find memory cafes and other support locally. Keep in touch and post any questions or problems you need help with.

 

[wattbiker]

Hello Everyone, Ive just joined,...

My dad was diagnosed with Lewybody dementia around 18 months ago and i was looking for some supportive ideas to help mom out who with the families support has been looking after him, its becoming more and more difficult for her as i'm sure you are all aware.

Just thought i'd post first of all to say hi!

 

[nae sporran]

Hullo and welcome to Talking Point, @wattbiker. You will find plenty of ideas and support here. It's always best to start by asking Social Services about a care needs assessment to see if they can provide some assistance for your dad and respite for your mum if that is needed.
Type your postcode or your parents home town in to https://www.alzheimers.org.uk/find-support-near-you and you should find some good local support. Please do keep in touch.

 

[karaokePete]

Hello and welcome from me too @wattbiker.

If you click the following link you will be taken to the Society Publications which contain a wealth of information about dementia and dementia care
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

 

[Tractorgran]

Hi, I’m new to this site. I’ve joined as my mum has dementia and it’s getting increasingly difficult, not to mention heartbreaking.

I lost my dad to vascular dementia nearly five years ago too but this presents so differently.

 

[nae sporran]

Hi, I’m new to this site. I’ve joined as my mum has dementia and it’s getting increasingly difficult, not to mention heartbreaking.

I lost my dad to vascular dementia nearly five years ago too but this presents so differently.

Hullo and welcome to the forums, Tractorgran. Sorry you have to deal with caring and dementia for a second time, and the heartache it brings.
You will find support here, so keep posting and ask anything you need.

 

[karaokePete]

Hello @Tractorgran, you are welcome here and I hope you find the forum to be a friendly and supportive place.

It is said that every individual with dementia is different and I'm sorry to read that you are having to deal with it again and that more learning as you go will have to be done. I find it very difficult and 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.

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

 

[huggie]

Hi all,
I'm a newbie to this forum. I care for my father at home as he has dementia with lewy bodies with parkinsonism. This is such a cruel disease. I hate it! I do have a question though and I hope some of you wiser, more experienced people may have some advice. As we care for my father at home without a care package etc. (This is our choice) The only help we get is the palliative nurse and the district nurses that are now coming in on a daily basis. Whenever we are asked about care packages and we say that we don't have one and that we are doing all the caring, we get looked at as if we have 2 heads. Its almost as if you are made to think that the care is not as good enough etc. My father has 24/7 care. Something that any care plan at home would be unable to provide yet it is considered something that is just not done. How can 1 to 1 care or 2 to 1 care all the time not be more superior to having a care package that sends carers in 4 times a day? I am shocked. If I have to tell them once more that no we don't have carers in then I think I will scream. Thankfully and luckily we are in a position that we can give this level of care ourselves to a loved member of our family. He wants to stay at home and die here, well that's what will happen. No hospice, no care home, no hospital. We are managing fine and so why is that such a shock? Don't get me wrong if you are not able to do this for your loved one for various reasons, then there is nothing wrong with that or a hospice/home etc and for us this is what he wants and is what hes going to get. We are coping very well. Is that just so hard to believe?

 

[Bunpoots]

Hello @huggie and welcome to the forum.

I'm assuming that as you have palliative care in place your dad is nearing the end of his journey. Forgive me if I've miss read your post.

It sounds to me as if you're doing a wonderful job coping by yourselves. I imagined I'd be able to care for my dad but it became too difficult when he lost mobility and there was only one of me.
I'm sure your family team are doing a stellar job. The professionals are probably just amazed at how well you are coping.

There are others on here who have kept loved ones at home until the end with very little outside help.

Keep posting. You'll find support here.

 

[huggie]

Hello @huggie and welcome to the forum.

I'm assuming that as you have palliative care in place your dad is nearing the end of his journey. Forgive me if I've miss read your post.

It sounds to me as if you're doing a wonderful job coping by yourselves. I imagined I'd be able to care for my dad but it became too difficult when he lost mobility and there was only one of me.
I'm sure your family team are doing a stellar job. The professionals are probably just amazed at how well you are coping.

There are others on here who have kept loved ones at home until the end with very little outside help.

Keep posting. You'll find support here.

Thank you so much for your kind words. They really do mean a lot. Yes we do have a Palliative nurse who has just started to come to visit with the district nurse. Its nice to hear from someone else that we are doing ok. When you are so close to it all its hard to step back and see what is actually happening.

 

[Lady_Boris]

Hello,
I joined about a week ago and have found the threads and information helpful and supportive.
My mum is in the process of being diagnosed with dementia, CT scan next week. It’s been a challenging couple of months. My brother and sister are also supportive.
We’ve just started a care arrangement with carers twice a day which mum is adapting to. She’s aware of her memory loss and gets quite upset which is hard to see. Social services are coming this week for a care needs assessment.
She’s frail and just started on high dose steroids too so i’m not sure if some of her more strange ramblings are due to those. I guess it’s all a work in progress.
I just wanted to say hi and this site is an amazing resource.

 

[nellbelles]

Hello @Lady_Boris and welcome to the forum
I pleased that you are finding the forum helpful and informative.
I hope now you have found us you will continue to post for support as your Mum progresses with her illness.

 

[accountsgirl73]

Hi. I've been looking around for advice and suggestions regarding dementia and I found myself here. My step dad was diagnosed around 2 years ago and is now in the mid/late stages and I'm waiting on a referral to a memory clinic for my mum who is showing early/mid signs. Step Dad has carers as he is bed-ridden and cannot look after himself, but mum isn't quite at that stage yet. Added to her ailments, she's quite physically disabled due to arthritis and spondylosis.

Not wanting to sound like I'm moaning, especially on my first post, but I am an only child and also a full time working, single parent, so at time it can get a bit much and I just thought that here would be a good place to get advice on how to get the extra help we need, whilst also a channel to vent occasionally.

I look forward to trawling the forums for advice and personal experience. Lovely to 'meet' you all.

 

[karaokePete]

Hello @accountsgirl73 you are welcome here and I hope you find the forum to be a friendly and supportive place.

I too find the caring role very difficult and 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.

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

 

[nellbelles]

And a warm welcome @accountsgirl73 from me also.
It’s a friendly and supportive non judgemental forum, a safe place to ask for advice and if needs be to have a vent..
I hope you will continue to post now you have found us.

 

[Isabel1924]

Hello it’s taken me a while to pluck up courage to talk to everyone. I am 71 my husband who is now 74 has dementia. He had a stroke in 2017 which suddenly became vascular dementia last year. Things have become gradually worse. I have been following several threads over the last few weeks which I have found extremely helpful. I don’t want to sit here complaining but sometimes it gets the better of me. The problems I have are will not wash definitely not shower (has only showered about five times since stroke), big if to clean teeth. He will only get dressed after inquest (are you sure I put this on etc). Marathon at breakfast pushing it away and me pushing back saying just two spoonfuls more. Lunch is virtually a no no just not interested and evening meal is becoming much the same. He has had a weetabix am, half round cheese and egg on toast lunchtime and virtuallynothing this evening. This has been the same for the last five days. I do supplement with Aymes shakes sometimes twice a day but how long can this go on. I know there are lots of others who have worse problems than me, but a problem shared is sometimes a problem halved. Thank you.

 

[Cat27]

Hello it’s taken me a while to pluck up courage to talk to everyone. I am 71 my husband who is now 74 has dementia. He had a stroke in 2017 which suddenly became vascular dementia last year. Things have become gradually worse. I have been following several threads over the last few weeks which I have found extremely helpful. I don’t want to sit here complaining but sometimes it gets the better of me. The problems I have are will not wash definitely not shower (has only showered about five times since stroke), big if to clean teeth. He will only get dressed after inquest (are you sure I put this on etc). Marathon at breakfast pushing it away and me pushing back saying just two spoonfuls more. Lunch is virtually a no no just not interested and evening meal is becoming much the same. He has had a weetabix am, half round cheese and egg on toast lunchtime and virtuallynothing this evening. This has been the same for the last five days. I do supplement with Aymes shakes sometimes twice a day but how long can this go on. I know there are lots of others who have worse problems than me, but a problem shared is sometimes a problem halved. Thank you.

Welcome to TP @Isabel1924
I’m glad you’ve plucked up the courage to talk to us. You’ll get lots of support here.

 

[nitram]

@Isabel1924

Regarding reluctance to eat,it could be worth checking, or asking a dentist or doctor to check, that there are no blisters etc in his mouth which make eating painful.
It's a long shot but worth taking.