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

 

[Rollema]

I have early dimentia and have lost my balance

 

[Rollema]

I have early dimentia and have lost my balance

If it weren't for my husband I wouldn't get by.

 

[Rollema]

I'm not sure what support is available

 

[nae sporran]

Hullo and welcome to DTP, @Rollema. I'm not sure whether you are looking for support with dementia or support with your balance. If it is your balance that could be down to an ear infection, so your GP would be the best person to ask. You will find support here from carers and others who have dementia, so please stick around.

 

[Paulbrit]

Hi. My wife lives with vascular dementia and often asks questions about aspects of her life which cause concern. I'm hoping we'll find answers/tips on the forum that will help.

 

[nae sporran]

Hullo and welcome, @Paulbrit. My partner has vascular dementia too and I know how that feels. When you feel ready to do so, please feel free to give us more details, ask questions of just let off steam on the https://forum.alzheimers.org.uk/forums/i-have-a-partner-with-dementia.69/ area of the site. You will meet others with similar experiences who are always happy to advise and support.

 

[Jmr38]

Hi, I’ve been looking after my mum alongside siblings and elderly dad for @18 months due to a number of conditions, lack of mobility and dementia symptoms which appeared this year. Mum has needed 24/7 care including overnights from me and my sister. It has been physically and emotionally exhausting but we were able to do our best for her and keep her at home as long as possible. It’s yielded some very precious moments and has been a privilege to look after her.
Five weeks ago we moved her into a home…even just the search itself was traumatic! We thought she had settled quite quickly initially as she wasn’t really aware where she was and seemed affectionate of the Carers. Just this week though she has been more lucid and started with the questions about going home, had we forgotten her, why hadn’t we been with her etc which is heartbreaking.thank you for the thread on that.
My main question just now is how to cope/what to do if you aren’t quite sure it is the right home for your loved one? We’ve a number of issues but it is so hard to get time with anyone as they are always so busy and seemingly short staffed…we are trying to be realistic about what we can expect but it’s difficult to understand whether the level of care is normal etc… not allowed to look round other homes in person due to COVID. I know it’s a huge adjustment for all of us but just want to do my very best for my beautiful mum

 

[Rollema]

Hullo and welcome to DTP, @Rollema. I'm not sure whether you are looking for support with dementia or support with your balance. If it is your balance that could be down to an ear infection, so your GP would be the best person to ask. You will find support here from carers and others who have dementia, so please stick around.

Hello
Mentally I have lost my way. Been on meds 20 years but finding it shuts down my thoughts. But need meds to live a normal life otherwise I hallucinate. Finding it very difficult.
Pat

 

[motorhome]

Hi to everyone. We are obviously new to this forum but we didn’t know who to turn to for our questions and I thought that we may get some answers on here. ?

 

[nae sporran]

Hi to everyone. We are obviously new to this forum but we didn’t know who to turn to for our questions and I thought that we may get some answers on here. ?

Hullo Jdowson and welcome. You will get answers here from people who are going through similar things and we can point you towards the helpline or the factsheets if that helps. So, feel free to ask questions on https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/ when you are ready.

 

[Linzie]

Hi, hope you can help and support me, i'm a carer for my father who has dementia and swallowing problems

 

[GDC]

Hello. I am a Yank and not sure how I ended up at a Alzheimer's website in the UK. I thought something was amiss while reading some of the posts and thinking to myself, "Gosh, these people talk just like our friends in the UK". Oh, now I get it. Anyhow, regardless of where we live the issues are the same everywhere.

My wife was diagnosed with Dementia just a couple of months ago. Now that we have a diagnoses I know what to call this wicked thing. I just don't know what to expect next or how to plan. I knew there was a problem some time ago but was probably in denial myself. Finally got her to see professionals because her headaches were so bad they made her cry. This is a strong woman, who can tolerate a lot of pain. I could describe some of the things she has tolerated that would make most of us beg for pain relief and yet she goes on, but that does not matter. The fact is these headaches are debilitating and prevent her (us) from enjoying even some of the simple pleasures of life.

I have been doing all of the household chores, banking, driving etc. for over 7 years. I thought it was mostly because of her physical issue; two hip replacements, shoulder surgery, back issues. But when she could not understand how to use the phone or remote to the TV I began to worry more. Then there was the forgetting of recent events, peoples names, even her children. The headaches continue., and now she complains of a shooting pain down to her right hand. She has a very bad gaited walk and much difficulty with steps getting into the house. She lacks an appetite and then suddenly eats everything on her plate. Sleeps a good deal but then claims she could not sleep at night. I could go on but what is the point.

All of this is probably very familiar to you all. The doctors have been unimpressive and we do not feel it is worth the effort to talk anymore with them. I have no idea how far she has progressed into this nightmare and I am sure it is impossible to tell. I am planning on making changes to the house so that it is more accessible but then I worry she (we) may need more help or different living arrangement. To complicate things we have a dog and cat and she does not trust even her own children to take care of her. Besides, they all live far away and seem preoccupied with their own lives and needs. As I said, this is all very familiar to you all. I will stop here and see what direction, advice you all can provide. I feel with so many of you out there, surely someone has some insight that is more useful than the doctors.
Thanks GDC

 

[Cat27]

Welcome to TP @GDC
Im glad you’ve found us as you’ll get lots of support & advice here.

 

[Cat27]

Hi, hope you can help and support me, i'm a carer for my father who has dementia and swallowing problems

Welcome to TP @Linzie. I see you’ve already been posting on threads. You’ll get lots of support here.

 

[GDC]

Welcome to TP @GDC
Im glad you’ve found us as you’ll get lots of support & advice here.

I do feel silly now. I mentioned I was a "Yank" because I was sure I had linked into a forum from the UK. The bottom of the web page has a link to change language (English U.K) and there were several references to "Mum" so I assumed everyone else was from the UK. My friends in the UK use Mum when talking about their mothers and some of the conversations about health care sounded so different from what I am familiar with that I thought for sure I had connected with a forum from the UK. I thought "oh well, even if the health care is different and not available here in the US at least I will get valuable insights into care providing. Boy, oh boy am I confused. Some one please tell me where I am.
Maybe I am the one with dementia and my wife is fine. I think I need some R&R

 

[Quite contrary]

Good morning @GDC
This is indeed a UK forum but has members all over the world who are more than welcome, as are you. Please keep posting as you will receive lots of information, advice and support here.

 

[Bunpoots]

Welcome from me too @GDC . We’ve had a few members from across the pond so you’ll fit right in! It’s always useful to know which country you’re from so we don’t start leading you up the garden path with advice which only works for the UK system..

 

[I thank you for the years]

I do feel silly now. I mentioned I was a "Yank" because I was sure I had linked into a forum from the UK. The bottom of the web page has a link to change language (English U.K) and there were several references to "Mum" so I assumed everyone else was from the UK. My friends in the UK use Mum when talking about their mothers and some of the conversations about health care sounded so different from what I am familiar with that I thought for sure I had connected with a forum from the UK. I thought "oh well, even if the health care is different and not available here in the US at least I will get valuable insights into care providing. Boy, oh boy am I confused. Some one please tell me where I am.
Maybe I am the one with dementia and my wife is fine. I think I need some R&R

Hi GDC and welcome. This forum site is based in the UK but has contributors from some other countries too. The forum site is hosted by the Alzheimer’s Society in the UK. You can access a lot of information electronically from their website (as well as from this forum) as i am sure you will also be able to from whatever the equivalent organisation is in the States.

I am new to this site too so others will be in a position to provide more detailed advice. I appreciate that the engagement that you have had to date with your doctor has not been particularly helpful and I know that when I went through the memory clinic process with my Mum here in the UK she found it bruising. That said, some of the “non-memory” symptoms that your wife has - I.e. continuing headaches, a shooting pain down to her right hand and a very bad gaited walk - sound quite concerning to me and seem to warrant further investigation.

It strikes me that you are taking sensible steps looking at how you can prepare for future eventualities. If you wife does not already have a power of attorney out in place then you should prioritise putting one in place if this is possible. We have two types in the UK - one for financial matters and one for health related matter. In the UK whilst solicitors do charge an additional fee to complete these for people they are relative straightforward for an individual to complete themselves. Obviously things will be a bit different in the States.

In addition to the above try to prioritise care for yourself. In the UK Carers are eligible for a Carer’s assessment and some support is provided to Carers although is unfortunately quite limited in nature. To use an airplane analogy you need to make sure you have fitted your own oxygen mask before you can fit your wife’s mask. You need to try to keep as healthy as possible in order to care for your wife. Try also to carve out some time for yourself if that is possible.

It sounds like you are already doing a great job. Send love and best wishes from over the pond xxxx

 

[GDC]

Thank you to all that replied to my request for clarification. I feel better now. Whew! I really thought I was losing perspective.
I am certain that following this forum will be insightful and instructive. There are times when I wished that we lived "across the pond" to receive better health care than we have here in U.S. Why we can not get it together to provide a universal health care system troubles me, for everyone's sake.
I do not have any reliable assistance or advisors nearby so this forum is my great hope (no pressure here). All ready "I thank you for the Years" has offered me somethings to think about. The doctors did not raise any additional concerns about the headaches, shooting pain in head and hand or the difficulty walking, so I assumed this is all part of the dementia symptoms. The staggering walk is obvious to anyone and I have mentioned the headaches several time to the doctors with get little reaction or advice, which leaves me thinking this is normal and we just live with it. This is when I wish we lived with a better health care system. But then is any health care system really ideal? Perhaps if it were a prefect world where doctors really cared and provided the best services we would have less need for forums such as this....??
I also need to go though our legal files and see if we do have a DNR in place. I know in the past when we could normal conversations about end of life needs, she made it very clear, as I did, that we did not want a life that required mechanical/medical support. We (I) do not want to have any doubts if that time should arrive and I need to explain myself to family or doctors.
Jeez, remember when we were all young and full of hope and promise and no concerns about these matters? Seems so long ago now. Friends and family are all slowly disappearing from our lives...... Well, as they say, Buck Up Boy! Get on with it! Stay the course and all will work out. Easier said than done.