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

[Mark_W]

Welcome to 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 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 Talking Point.
  
• We also have a Quick Guide explaining how to use 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 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 Talking Point to help you?

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

Mark

 

[Liz33]

Hello
My mother is 97 and has dementia for atleast 7 years maybe longer ?She lives in her own home .She is also partially sighted.I am her daughter and her main carer.I have two brothers .Mum gave me the Lasting power of attorney after my father died 25 years ago saying she would like to remain in the family home as long as she could manage but then would go into a care home as long as I found a good one.
Both my brothers are very anti care homes for various reasons though I suspect the main reason is the cost?
I have and manage 3 private carers doing 4 visits a day.I visit practically every day for 2 or 3 hours and do her shopping ,manage her money.
My brothers do help with hospital visits .
My mother said a couple of years ago " what do those boys do "I think I will change my will if you take me to the solicitor .I said no but told them in the hope they would see her more frequently.Naughty of me but I felt they could do more .The older one still works for himself and the younger one too though not so much since he has been ill.
They have especially the younger one who now often stays with her at weekends as he doesn't live close enough to pop in.I do worry when she is lonely if she has enough care .
For 97 she is still amazing and goes upstairs though frequently says "is this my home ?Where do I sleep?
She also has trouble with continence and while I cope with her asking me the same questions find helping her to cleanherself up after she hasn't made it to the toilet quite distressing though I'm getting use to that too.
My question is will I know when she would be better off in a care home or is she better in her own home ?
I do have reliable carers but sometimes feel annoyed that they sometimes claim for more time than they do though my brothers always say "Dont upset the carers"I expect a lot for her .
My older brother thinks she wouldn't get so much individual attention in a care home and maybe he is right.

 

[karaokePete]

Hello @Liz33, 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, when is the right time for residential care 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.

 

[nae sporran]

Welcome to TP from me too @Liz33. You will get support from others who have made the decision to put a partner or parent into a care home. I'm only at the stage of thinking about the cost and the guilt. It's good to read your brothers are getting more involved though.
As for carers, we have changed agency a couple of times and I have reached the stage where I don't mind if they don't necessarily stay for the full time so long as my partner is happy, warm and clean when they leave.

 

[ScaredyCat]

Hi, my mother was diagnosed with Alzheimers disease on Friday. I knew this would be the diagnosis and am exactly aware of worse case scenario outcome, should she not die before end stage alzheimers. This is because my grandmother and grandfather had it.
My mother is still quite with it but I am still in shock and denial and alternate between crying because I am heart broken, crying because of how sad my mum must be and crying because U don't know how I'll be able to cope.
Anyway, just saying

 

[canary]

Hello @ScaredyCat and welcome to Talking Point.

It is always overwhelming to be told the diagnosis, even when you are expecting it. You will get lots of support here because we all know what it is like. Have a mooch around and feel free to join in or start your own thread if you want to talk about or ask something specific.

 

[Captain Dinosaur]

Hey everyone.

I'm 34 and have recently started struggling with my memory.
That is pretty much it...

-Waves-

 

[nellbelles]

Hello @Captain Dinosaur and welcome to the forum
I would Suggest that your first point of call is your GP, there can be many reasons to be struggling with your memory and sometimes a blood test can pinpoint the problem quite easily.
I hope that helps as I understand how worried you are.
Now you have found us I hope you will continue to post for support

 

[Captain Dinosaur]

Already had a blood test and came back clear. Just waiting to speak to a specialist to see if it's linked to my sleep disorder.
I swear my dog is hoping I'll forget whether I've fed him or not as he hovers around his bowl more now lol

 

[nellbelles]

@Captain Dinosaur I’m pleased that you are being proactive to finding the underlying cause of your memory issues, I hope you get some positive feedback soon

 

[linglitterbug]

Hi, my name is Linda, usually called Lin. I went to the doctors last week, and thought I was going about my knees. She started talking about Alzheimer’s/dementia, and then told me I have it. Shock isn’t the word! Can only assume my daughters had talked to her beforehand. I knew absolutely nothing about this, and it had not been mentioned to me. I am waiting for an appointment with the Memory Clinic, whatever that is. Just want to curl up and die! I’m worried, confused and frightened.

 

[ScaredyCat]

Hi, my name is Linda, usually called Lin. I went to the doctors last week, and thought I was going about my knees. She started talking about Alzheimer’s/dementia, and then told me I have it. Shock isn’t the word! Can only assume my daughters had talked to her beforehand. I knew absolutely nothing about this, and it had not been mentioned to me. I am waiting for an appointment with the Memory Clinic, whatever that is. Just want to curl up and die! I’m worried, confused and frightened.

 

[Shedrech]

hello @linglitterbug
a warm welcome to TP
I'm sorry you've come to us confused and frightened but really glad that you have found this wonderfully supportive community so you know there are folk here to talk with
I guess your daughters may have been worried about your health and asked your GP to give you a check up
I'm not sure how your GP has made the diagnosis, so it will be helpful for you to attend the memory clinic and have a chat with the consultant there
maybe as things pop into your head, write out some notes of anything you would like to ask so you have a prompt when you go to the appointment
I hope you have someone who can go with you for support

do post here with anything that's on your mind as members are very helpful

maybe start your own thread when you are ready, here possibly
https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/

 

[nitram]

@linglitterbug

As has been said it looks as if your daughters have been proactive in talking to your GP.
Well done to them and also well done to you in accepting the diagnosis, denial often leads to problems.

'Memory clinic' essentially is 'referral to a dementia specialist' in
https://www.nhs.uk/conditions/dementia/diagnosis/

Again, to keep all queries and answers in one place you could start your personal thread on https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/

 

[Scrimjay]

Hi, Just joined the other day. My husband was diagnosed with dementia just over a year ago. It's quite difficult to understand the condition as sometimes he seems to be aware of what's going on that day, then other times he can't remember a conversation 5 minutes ago!

He also has osteoporosis, so is struggling a bit to walk very far. I got him an exercise bike, which he enjoys, but I find it very hard that he mostly refuses to go out of the house. He says things like "I'll go out when I'm better" or "I don't want to give them (referring to a friend) what I've got". Our daughter & I have tried to take him out for coffee or something & he says "you two go out & enjoy yourselves, I don't want to hold you up". I think its partly that he doesn't want people to see him, but I wish there was a way of persuading him to go out as I'm sure it would strengthen his back (and on the odd occasion when we've got him out, he's enjoyed himself)!!

If I leave him for an hour or two, he just sits watching his favourite tv programmes, that is, until he hits the wrong button on the remote, then can't work out how to get back to that programme, which is very frustrating for him.

 

[karaokePete]

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

People with dementia will cling to the familiar for security and a general anxiety, that often accompanies dementia, may be producing the behaviour you are seeing. My wife is treated for depression and anxiety as well as her dementia.

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.

 

[karaokePete]

BTW, just to cut down on the searching a bit, here's a link to a specific Factsheet about the anxiety issue. Just click the PDF line if you want to read it
Apathy, depression and anxiety (444)
PDF printable version

 

[Scrimjay]

Many thanks, i'll have a look. He is taking an anti depressant, which has helped a bit. He used to be so active, always wanting to go off walking, cycling and away for short breaks etc with me, so this completely different attittude (for want of a better word) is very hard to come to terms with, for both of us.

 

[Grannie G]

Hello @Scrimjay

My husband also had osteoporosis and also said `you go by yourself` and like you I`m sure it was a bit of self protection and hesitation because he had lost confidence.

The difference is my husband would go for walks by himself. I`m sure it was so he could keep his head down , concentrate on his walking and make sure he wouldn`t have to socialise.

Is your husband capable of going out alone? Would he be safe? If so, could you persuade him just to have a walk round the block just to strengthen his back.

 

[Nims22]

Hi. I am looking after my mum who lives independently up the road from me. At the mo she is capable of looking after herself and feeding herself. She can no longer look after her flat and has memory for about 1minute. She has refused to go in the scanner as she is scared to go in it so remains undiagnosed. I have recently put her on an automated pill dispenser as she overdosed on blister packs a few times. I get daily phonecalls that she has run out of tablets/ the machine is broken.. She managed to break into it one day and took 5days worth of antipsychotics for her schizophrenia. I am struggling with the paranioa, the fact that she is well but not well enough to cope but not ill enough to get external help bar dementia nurse. I feel so guilty that I am not supporting her enough... Or my young kids. Even my dog gives me a hard time. I have nursed people who have died of dementia, I know what is coming. Thankyou for listening.