Say hello and introduce yourself

[HarrietD]

Welcome to Dementia Support Forum

However you have been affected by dementia, our community is a place to get support from others.

Say hello

This is our welcome thread - the place many members start. Our volunteers and regular members are here to say hello to you and to welcome you to our community.

This thread is for you to say hello and tell us a little bit about yourself, and your connection to dementia.

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

How to use the community

To post a new thread:

1. Click here to see the list of forums on the homepage. Under 'Support from other members' you'll find a list of different areas of the community. Choose the one which seems most relevant to you or your question.
2. Click on the yellow button that says 'Post thread'.
3. Type in a title and then write your message in the text box. Once you've done that, click on the yellow button that says 'Post thread'. Other members will now be able to reply to you

Any questions?

If you have any questions, you can email us on DementiaSupportForum@alzheimers.org.uk - we're here to help.

 

[Miss Purple 66]

Hello all, Just putting my toes into the water, I hope its warm I am hoping that someone some where will understand the frustration ans despair that i am going through and can offer some type of help.
I along we my two younger brothers have a wondeful mother that is 84 and has been diagnosed with Alzheimers about 8 years ago. 7 years ago we lost our dad. Mom is still able to live by herself with the help of her dog and a very good carer that visits 3 times a day to give mom her tablets.
However, mom has never accepted that there is anything wrong her and can get very angry if we tell anyone or mention it. But the last year she seems to be deteriating to the point she will repeat herself with in a minute and ask the same question and has not recall memeory at all. She is also now starting to put things in the wrong place. Me and my brothers are wondering how we go about making the home safe for her.
We have Ring camera and she has a tracker on her keys (as she still takes the dog for a little walk every day). Bu now starting to forget where she puts the house keys when she is out and goes around the nieghbours to ask if someone can help her.
Not sure if this is the right way to introduce myself. We all work but live within an hour drive to moms and see her between us 4 times a week. thank you, Karina

 

[Louise7]

Hello Karina @Miss Purple 66 and welcome to the Dementia Support Forum. Sorry to hear about your mom, it's hard to see the deterioration, and what you have been experiencing will be familiar to many here. It's common to not want to accept there is anything wrong and when my mum was the same it was a case of everyone not really mentioning it. It sounds like you are putting the right things in place in terms of the tracker and Ring camera. When your mom goes to the neighbours to ask for help is this causing problems for them? My mum's next door neighbours were happy to help now and again, but when mum started to go out more on her own then it did become a safety issue and it wasn't long before she needed 24hr care to keep her safe. Sorry that my experience isn't probably not much help, but people here do understand what you're going through. This is a friendly and supportive place full of useful information, and members are happy to offer advice and support when they can, so hopefully others will be along soon with some suggestions for you.

 

[Tracycatherine62]

Hi, my Mum has a mixed dementia diagnosis and is now in a care home. I found the forum when looking for information on how to register power of attorney with various organisations. The information was so helpful and reading the threads made me feel comforted and supported. Thank you.

 

[nellbelles]

Hi, my Mum has a mixed dementia diagnosis and is now in a care home. I found the forum when looking for information on how to register power of attorney with various organisations. The information was so helpful and reading the threads made me feel comforted and supported. Thank you.

Hi and welcome ! now you have found the forum please keep posting, it’s a helpful and safe place for support and information!

 

[Gosling]

Hello and welcome from me also @Tracycatherine62 to this friendly and supportive forum. There is a wealth of shared experience of dementia here so I am glad you have found us.

I am sorry to read about your Mum, but hope that you are comforted in some way that the care home is providing good and safe care 24/7.
This is such a great forum for sound advice, understanding and just a listening ear sometimes. I am glad you have already found some of the information useful here, and that reading some of the threads has made you feel comforted. You will certainly find that people here really do want to help.

 

[Allotmemteer]

This is not a reply I just don't know how to use this thing. I am totally at the end it has been 2 years. I am moving out and giving up LPA no one should have to live with this abuse and trauma every day. Doctor no good anti depressants no good. No one helping at age 60 I am finally going to have my own life when I move out. Good luck to everyone who chooses to stay in this hell bit I am getting out after 18 years of care and the last 2 with dementia. Up to the government now.

Goodbye

 

[Kevinl]

This is not a reply I just don't know how to use this thing. I am totally at the end it has been 2 years. I am moving out and giving up LPA no one should have to live with this abuse and trauma every day. Doctor no good anti depressants no good. No one helping at age 60 I am finally going to have my own life when I move out. Good luck to everyone who chooses to stay in this hell bit I am getting out after 18 years of care and the last 2 with dementia. Up to the government now.

Goodbye

Please never think that what you post goes unread, but sometimes it's difficult to know what to say, other than thank you for what you done but at some time we all hit the wall and for your own sanity need to quit. Well done you. K

 

[BarbD1958]

This is not a reply I just don't know how to use this thing. I am totally at the end it has been 2 years. I am moving out and giving up LPA no one should have to live with this abuse and trauma every day. Doctor no good anti depressants no good. No one helping at age 60 I am finally going to have my own life when I move out. Good luck to everyone who chooses to stay in this hell bit I am getting out after 18 years of care and the last 2 with dementia. Up to the government now.

Goodbye

I think we have all wanted to just up & leave, most of us after only a couple of years so no judgement here just lots of good luck wishes

 

[BarbD1958]

Hello all, Just putting my toes into the water, I hope its warm I am hoping that someone some where will understand the frustration ans despair that i am going through and can offer some type of help.
I along we my two younger brothers have a wondeful mother that is 84 and has been diagnosed with Alzheimers about 8 years ago. 7 years ago we lost our dad. Mom is still able to live by herself with the help of her dog and a very good carer that visits 3 times a day to give mom her tablets.
However, mom has never accepted that there is anything wrong her and can get very angry if we tell anyone or mention it. But the last year she seems to be deteriating to the point she will repeat herself with in a minute and ask the same question and has not recall memeory at all. She is also now starting to put things in the wrong place. Me and my brothers are wondering how we go about making the home safe for her.
We have Ring camera and she has a tracker on her keys (as she still takes the dog for a little walk every day). Bu now starting to forget where she puts the house keys when she is out and goes around the nieghbours to ask if someone can help her.
Not sure if this is the right way to introduce myself. We all work but live within an hour drive to moms and see her between us 4 times a week. thank you, Karina

I’m sure everybody on the forum has been through this and more so your frustration is totally understandable, I’m afraid it only gets worse and making her home totally safe isn’t really possible. You have to try and think what would you not let a toddler have whilst still trying to maintain your PWDs dignity, try to just make small changes rather than loads at once, we fitted a key safe outside for carers & my brother was so confused over it he thought he had to use it rather than his house key and that the numbers had reprogrammed his telephone.. he still doesn’t think he has anything wrong with him despite being incontinent & refusing to wear pants most of the time, he has an amazing number of splashes down himself from doing the washing up!
I live 5 hours away & someone suggested room cameras, I haven’t been brave enough to yet, I’m not sure I want to see what I might see.
I joined when I was desperate for help but getting none from social services and I was given some great advise and just being able to say what you feel with no judgement is brilliant.
good luck x

 

[Terri24]

Where is a good place to learn how to start? Thank you, Terry

 

[Terri24]

I have not been able to find a section that addresses how to start using this wonderful looking site. I would appreciate any assistance. Thank you.

 

[northumbrian_k]

Hi @Terry Tooley Welcome to Dementia Support Forum. There are many ways to find information on this site. Perhaps the most useful are 1. to view the list of different sections (forums) and see if there is one pertinent to your circumstances and 2. to click on the new posts option on the menu. You can ask questions or raise any issues by starting your own thread or by replying to existing conversations. There's also a search function which enables you to look for specific phrases.

To illustrate, when I first joined in 2017, I created a thread in the forum that was relevant to me as a person with a partner who has dementia. Soon afterwards I received helpful replies from several members.

There is some guidance on how to use the Forum (see below). If you have any questions don't hesitate to ask by using the Post Reply button.

How to use Dementia Support Forum

This forum is a place to ask questions about how Dementia Support Forum works. It contains Help videos and other technical tips.

forum.alzheimers.org.uk

 

[BeverleyA]

Hi, just joined. I am a carer for my husband who has Alzheimer's. He was diagnosed 4 years ago, but was showing all the signs prior. He is steadily getting worse and the only good things are he can take care of his personal hygiene, dress himself & he eats well. This is a horrible disease & I miss the person I knew as my husband. On the caring side, I've lost most of my friends as he won't let me out of his sight but will address that by getting in a paid carer.

 

[Grannie G]

Welcome @BeverleyA

It`s likely your husband won’t let you out of his sight because you are his security.

It`s an enormous responsibility for the carer

I hope you’ll be able to get an agency/paid carer to help you and then hopefully you’ll be able to resume your lost friendships.

 

[Bevhar]

Hi, just joined. I am a carer for my husband who has Alzheimer's. He was diagnosed 4 years ago, but was showing all the signs prior. He is steadily getting worse and the only good things are he can take care of his personal hygiene, dress himself & he eats well. This is a horrible disease & I miss the person I knew as my husband. On the caring side, I've lost most of my friends as he won't let me out of his sight but will address that by getting in a paid carer.

My name is Bev & my husband has Alzheimer’s I try so hard to remain positive but some days it’s so hard Can I ask do you attend any groups these have helped me I’m finding it increasingly difficult to deal with He has always been my rock but I now need to be his and I don’t want to be He no longer has empathy which is really hard It’s so lonely Have you got any family nearby I’m lucky I still have my friends at the moment & hope they stay around Take care this forum has been a lifeline for me

 

[Kevinl]

Hiya from me. K

 

[Izzy]

Welcome from me too @BeverleyA.

I'm sorry to read about your husband's dementia. You do sound positive even though you're coping with a lot. I hope that you can get a carer to give you some respite.

I'm glad you've found this forum. You'll find understanding and support here.

 

[BeverleyA]

My name is Bev & my husband has Alzheimer’s I try so hard to remain positive but some days it’s so hard Can I ask do you attend any groups these have helped me I’m finding it increasingly difficult to deal with He has always been my rock but I now need to be his and I don’t want to be He no longer has empathy which is really hard It’s so lonely Have you got any family nearby I’m lucky I still have my friends at the moment & hope they stay around Take care this forum has been a lifeline for me

Yes we have a local dementia group which meets every month at the moment. First time we went, my husband was soooo against it. So when we go there we were separated, me with the carers and him with the others. I was so worried about him that I left my group to see if he wanted to leave and blow me down, "I'm not ready to go yet!"! he says. You could have knocked me down with a feather. So we try to go monthly at least it gets me out of the house and able to have conversations with others which I cannot do with him.

 

[Grannie G]

Hello again @BeverleyA

When my husband and I went to our local support group it followed the same pattern. People with dementia in one group and carers in another.

I enjoyed my carers group. My husband spent the time with his back to the group, staring out of the window. He refused to engage in any way.

I continued to attend but I’m afraid it was the first and last time for him. He stayed at home