Say hello and introduce yourself

[HarrietD]

Welcome to Dementia Talking Point

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

Find 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.

Connect 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.

Once you've found the relevant area for you, click on the 'Post new thread' button, and scroll down to the bottom of the page. Write your message in the text box and then click on 'Post new thread' and other members will be able to see and respond to your message.

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.

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.

Harriet

 

[Sophia03]

Hi. I live a long-ish drive from my parents, one of whom is suffering with dementia, and the other who is suffering as a result. This reached a crisis point last week when my dad had to call out the ambulance because mum couldn't move out of the armchair, complaining of pain. When he told her the ambulance was coming she got up immediately and stood by the window to wait for them. The rest of this story we're still reeling from. Both my Grandmas had dementia, but nothing prepares you for your mum being the one who disappears before your eyes and becomes someone none of you recognise. In my mum's case she seems to be becoming the worst of her traits and projecting her own father onto my dad. Not good. And feeling quite heartbroken about it. Life is already complex in our household. I wish I could be nearer them, but that would mean moving away from where my children are, and changing every point of contact for my very ill husband's care.

 

[canary]

Hello @Sophia03 and welcome to Talking Point, the friendliest forum I have found with lots of people who are knowledgeable and have lots of experience.

Im sorry to say that it is the changes in personality that are IMO the hardest things to deal with. By the way, the incident that you describe - her getting stuck in a chair and then being able to move later - is quite typical of Lewy Body Dementia. Is this what she has?

Edit to add - I wondered whether this video resonated

teepa snow lewy body movement - Bing video

www.bing.com

 

[Tracyann61]

Hi my mum has mid stage Alzheimer’s, shes 88 yrs old and apart from her short term memory she’s doing really well. She still lives independently. Is it a slow progress or can people with dementia relapse quickly. I’ve been told that my mum may progress really slow as she was diagnosed 6 years ago and is still able to bathe and cook for herself etc. I would love to receive advice or ideas on things to do to keep my mums mind active etc.
Thank you

 

[Izzy]

Welcome to the forum @Tracyann61. I’m glad you’ve found the forum. You will get lots of support here.

 

[Tracyann61]

Thank you Izzy I’m looking forward to reading other peoples experiences

 

[nellbelles]

Thank you Izzy I’m looking forward to reading other peoples experiences

Hi @Tracyann61 a warm welcome from me as well this is a friendly and supportive forum now you have found us I hope you will continue to post

 

[Invisible Missus]

Evening... my husband has early onset vascular dementia. We had noticed memory issues over the past 3 - 4 years but thought little of it. Two years ago he had a knee replacement and surgeon spotted atrial fibrillation. 18 months of toing and froing to various hospitals and he was, along the way, diagnosed with thyroid cancer. But they could not remove the thyroid because he also had serious cardiovascular disease which was more life threatening. So he had open heart surgery last year and the surgery seemed to push him over the cliff with regards to his cognitive skills and memory. His mobility is also very poor and he has nerve damage to hands and lower limbs which causes him pain. He was diagnosed with vascular dementia just before Christmas. I am also carer for our son who has multiple medical problems and autism. So our household is quite challenging at times especially when I too am feeling under par with generalised arthritis pain and my own mobility issues. That said, I know that I do not have the monopoly on misery! My greatest sadness is my own loss of freedom and the fact that I can no longer come and go as I please and I am also not able to spend much quality time with my son either. My husband has no insight into how much I now do for the household. I have come to terms with the journey that I am on but I don't like it and I have some dark moments as I am sure many here will recognise. I have a routine now with my husband. I take him out every single morning and I try to catch up with things in the afternoon and evening. I am often at the computer late at night to sort out household business etc.. I am here for company really as I no longer see friends and social outings are very very rare. I keep telling myself that I must remain thankful for all the good things we have and no one can take away my memories. Those are mine to keep. My own life is passing me by now and I don't know how much more time I have ahead of me. Our son is very anxious about his own future without his parents and he is having to witness the ageing of his mum and dad. It is tough for him. That's it really. It is what it is and we just have to do our best. I don't expect any support from any official source. I've had enough of fighting for our son over decades. I think caring for him has given me a lot of experience and I find I can apply some of that to the care of my husband now. I just need to stay alive for the next however many years and perhaps I will outlive both of them so that I can die in peace. What a thing to say, I hear you cry! But it is an indictment of our social care system that leads me to lack trust in any help that might be around.

 

[Gittel]

Hello I’ve been reading posts that I can relate to on and off but thought it’s time to post and join the group officially.
My husband was diagnosed a year ago with Alzheimer’s and he’s deteriorated so much over the past few months. As a newbie here, I find it really helpful seeing the answers to questions I could have posted myself. But I also find it hard to read that so many people have been going through this daily trauma for six or seven years and it makes me feel so depressed about what the future holds - how do you do it year in year out and have any quality of life for yourselves?

 

[Scatt76]

Hi,

My mother who is in her 80's has recently been diagnosed with Alzheimer's. We have known for a number of years that she has had issues with her memory, but being of a certain generation, she was too stubborn to face the fact and told the memory clinic a couple of years ago, that there was nothing wrong with her memory, as she has always had a bad memory.

It has been a difficult number of years seeing a very intelligent, high flying woman, deteriorate and having the same conversation over and over again within a few minutes. I have found it hard to try to not get annoyed and upset, so any advice would be gratefully received. I have also suffered from depression throughout my life and going through peri-menopause, so coping with a lot regarding myself.

I also have my two children, 19 and 17, who are very close to their grandmother and have lived with her condition for the past few years. They have been fantastic, but feel at times it is also a lot for them to take on board, seeing a loved one deteriorate. Luckily we have not got to the stage where she does not know who we are, but would like advice on how to prepare them for when the time comes.

Apologies for the rant, it is just a relief to be able to finally get it out within a community that understands.

 

[Grannie G]

Welcome @Scatt76 You have come to the best place to offload and need never apologise

The following has helped many of us and I hope it helps you too

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[Grannie G]

Welcome @Invisible Missus and @Gittel

I hope you will both find help and support here on Dementia Talking Point.

To get the best support possible now you have introduced yourselves it will help if you start your own Threads in the most appropriate section of the forum.

The best for you both will be the section I have a partner with dementia and you will find it here;

I have a partner with dementia

This forum is for people with a partner or spouse with dementia.

forum.alzheimers.org.uk

 

[BenC]

Hello, I just joined yesterday. My father is 93 with Alzheimers, it seems quite advanced to me but he is only just being diagnosed and meeting doctors. He was widowed a couple of months ago and prior to that my stepmother was evidently helping him more than we realised. To give an idea of his level then an hour after her funeral he remembered nothing about even having left the house that day and he still wakes every day thinking she is alive and goes searching for her.
I live outside the UK but my brother and I are doing all we can to help him and I have visited three times since her death. My biggest fear/worry at the moment is about him driving. He still has a car. I tried to find the keys and hide them last time without luck and ,even though there is no official diagnoses yet, I want to stop him asap in case he hurts himself or someone else.
Does anyone have experience of reporting a relative to DVLA ? Would they know specifically who has reported them ? [he would get upset and angry]
Thanks ....and a great site !

 

[susgoo1]

Hi my Mother in law has dementia, her husband who is her sole carer had a stroke a few years ago. However right now he is struggling with it all as he is trying his best to deal with situations, his stroke has affected his memory and as they are both ageing quickly the difficulties are proving to be challenging for him.

 

[SherwoodSue]

Hello, I just joined yesterday. My father is 93 with Alzheimers, it seems quite advanced to me but he is only just being diagnosed and meeting doctors. He was widowed a couple of months ago and prior to that my stepmother was evidently helping him more than we realised. To give an idea of his level then an hour after her funeral he remembered nothing about even having left the house that day and he still wakes every day thinking she is alive and goes searching for her.
I live outside the UK but my brother and I are doing all we can to help him and I have visited three times since her death. My biggest fear/worry at the moment is about him driving. He still has a car. I tried to find the keys and hide them last time without luck and ,even though there is no official diagnoses yet, I want to stop him asap in case he hurts himself or someone else.
Does anyone have experience of reporting a relative to DVLA ? Would they know specifically who has reported them ? [he would get upset and angry]
Thanks ....and a great site !

Without telling the rest of the family I wrote to the GP of my father in law. I was so worried about his driving. What if he killed a child?
GP fetched him in for ‘health‘ MOT‘ and stopped him driving. GP informed DVLA and the rest of the family

 

[northumbrian_k]

Hi @susgoo1 and welcome to Dementia Talking Point. This is a supportive and friendly place where you can raise any issues. I am sorry to read about your situation. It sounds as though some professional help is needed. Being a sole carer is difficult enough if one is healthy and far harder if one's own health is not good.

These links might give you some useful information. Please come back if you have any questions.

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

Paying for dementia care in England

Dementia care isn't free, and you may need to pay for some of the care you or someone you know needs. We help you understand the different ways to pay for care, and the amount you might be expected to pay.

www.alzheimers.org.uk

 

[LegoLootGoblin]

Hi everyone. My Dad (80) was very recently diagnosed with mixed Alzheimer's and Vascular Dementia, and to be honest, this didn't come as a surprise to either my wife or I. We've suspected for a while, and the diagnosis was almost a relief (which we then feel guilty about). He currently lives in a rented bungalow, which the owner is in the process of selling, and so we need to find him somewhere else to live (this has been ongoing for about 7 months now). He is adamant that he is going to move 200 miles away to be where he grew up, but we are adamant that this won't happen (I know we can't force him to leave but he doesn't have the capacity to make this move happen and we don't believe it's in his best interest to make this move). We've had a needs assessment carried out by our local Social Services team, but when they asked him the questions on the phone for this, he told them things that aren't true (e.g. that he eats a hot meal every day which we know he doesn't, that he showers and washes clothes every other day - again we know this to not be true) and so social services determined that he had no care needs.

We're the only family that he has (my Mum passed away 6 years ago) but he tells anyone that will listen that we don't have time for him because we're too busy (despite the fact that we visit him 3 or 4 times per week, take him shopping etc.). He recently had a car accident (before the diagnosis) and so is currently without a car which he is quite cross about. My wife and I are dealing with the insurance and follow on from this.

We think that his best move would be into a care setting but he gets angry about this as well and feels that we are interfering and trying to stop him doing what he wants to do (which in a way we are I guess).

I appreciate that this is a bit of a splurge onto the screen but hoping that we can learn and get support (and give it as well)!!

 

[BarneyBear20]

Hello everyone
my mum has Alzheimers and vascular dementia, she is 79 years old and was diagnosed in her late 60's mum has been in a wonderful care home for the last 5 years , mum now has full nursing care and is unable to do anything for herself .
mum spends most of her days in bed and has been this way for the last couple of years , my dad visits three times a week and has finally excepted mum is not going to get better .
I visit at weekends with my brothers , my darling mum still gives us a little smile every now and then , and visablly relaxes from the awful twitches she gets when her favorite music is played.
I love my mum deeply but I am struggling with visit ,its getting really hard and I take a deep breath when I go in , looking at other people messages has really helped and I am hoping that joining this forum will help

 

[Sarasa]

Welcome to Dementia Talking Point @LegoLootGoblin and @BarneyBear20.
@LegoLootGoblin - your dad probably thinks he is fine, it is every one else that is wrong or confusing him. If you haven't already done so do tell the DVLA about your dad's diagnosis. If he still wants to drive they'll probably ask him to be assessed before being allowed to do so again. Certainly dissuade him if you can. If your dad is self-funding (having assets over £23,500) I'd try to introduce some carers for him so that he does get a hot meal and some company. You might need to be economic with the truth about it, maybe say its a service for everyone over a certain age.

@BarneyBear20, I too find it difficult to visit my mum, as she is a pale shadow of the funny, feisty woman she was. I'm glad you go with your brothers, I find visiting with someone else makes things a little easier.

This is a very friendly and supportive place so when you feel ready do start a thread in the I care for a person with dementia forum as you'll get more replies that way.

 

[Teacher212]

Hello! Thank you for including me in this platform.
My mom was diagnosed with dementia 2 years ago. She is exhibiting some behaviors now that I’m curious about. She isn’t the least bit interested in activities that might help improve her state. She won’t exercise, won’t do puzzles or word searches to help brain activity. All she does is play on her cell phone ( solitaire, Facebook, CNN). She has recently started talking to herself, and she doesn’t want to leave the house anymore. Are these typical behaviors?