• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Welcome to Talking Point - introduce yourself here

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Zanth

Registered User
Nov 3, 2017
11
Hello, I have just joined this forum today. My 88 year old father was diagnosed with Alzheimer's disease earlier this year. Unfortunately, we have seen a rapid decline in him and he is fast approaching the stage when we will need to find a care home for him. I was hoping to share thoughts, ideas and experiences with other members here.
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,668
Merseyside
Hello, I have just joined this forum today. My 88 year old father was diagnosed with Alzheimer's disease earlier this year. Unfortunately, we have seen a rapid decline in him and he is fast approaching the stage when we will need to find a care home for him. I was hoping to share thoughts, ideas and experiences with other members here.
Welcome to TP @Zanth :)
You’ve come to the right place to share experiences.
 

HillyBilly

Registered User
Dec 21, 2015
1,947
Ireland
Hi @Zanth. Sorry to read of your father's decline. There are many of us here on Talking Point who have faced the same prospect so you will certainly find lots of support here. Welcome.
 

Erkenwald

New member
Nov 3, 2017
8
My wife has Alzheimer’s and has removed all the photos of the pair of us from the walls ,she has also lost all memory of our marriage and time together ,I have gone from husband to carer
 

LadyA

Registered User
Oct 19, 2009
13,562
Ireland
Hello @Erkenwald and welcome.

That sounds very hard to deal with emotionally. We know in our heads that it's not our loved one's fault, it's the disease, etc. - but our life's companion no longer recognising or remembering who we are cuts us to the heart, just the same. We know it's the disease, but it still hurts!

You've come to the right place to find support. There are many here who will understand exactly what you are going through.
 

Erkenwald

New member
Nov 3, 2017
8
Hi, I've just joined TP and, after visiting the forums, I'm sure that it will be helpful. I'm 71 and my wife, who suffers from Alzheimer's, is 74.
Hello to you all.
Hi there CharlieH
My wife is 73 and has Alzheimer’s to ,so I think some of our experiences will be the same at least we both now have a forum where we can share them
 

CharlieH

New member
Nov 3, 2017
7
Hi there CharlieH
My wife is 73 and has Alzheimer’s to ,so I think some of our experiences will be the same at least we both now have a forum where we can share them
Hi there Erkenwald,
I'm sorry to hear that your wife also has Alzheimer's. Jo( my wife ) was diagnosed about 2 years ago and has been in steady decline since then.
 

Erkenwald

New member
Nov 3, 2017
8
Hi there Erkenwald,
I'm sorry to hear that your wife also has Alzheimer's. Jo( my wife ) was diagnosed about 2 years ago and has been in steady decline since then.
Hi CharlieH
For the last couple of years my wife’s condition has quite stable although always challenging but just recently her decline has increased more quickly and I have to keep remembering the person she once was
 

KPULESTON80

New member
Nov 8, 2017
2
Hi all, firstly I would like to say hello to all of you, I am so glad I finally found this website.

I am a 25 year old woman, who has a mother of 59 who is in stage 6 of Vascular Dementia. She has suffered with this for almost 4 years diagnosed - with hindsight I think she has shown symptoms for about 8 years.
I am an only child so apart from my dad I hav pretty much dealt with this on my own, whilst bringing up a 3 year old and a 1 year old, but now she is in the latter stages, I am finding it increasingly difficult to be that strong individual I once was with this.
That is the main reason I joined, to talk to people who will understand and to help others with advice.
Sorry for the long post lol, I only planned a short note but I tend to waffle.
Hope to speak to some of you in more depth soon xxx

Hi Anna

I can relate as my dad has vascular dementia only diagnosed a few months ago but I would say he has suffered for some time.

I didn't know there were stages of dementia so I have learned something already.

I'm struggling too at the minute as my circumstances have changed and I am having to go back to work and am studying whilst being a single mum to a 9yrs old and a 20yrs old who has not long left home.

I feel guilty for having to carry on with my life and that I am not able to drop everything for my dad nor can I and he has no way of understanding what I am going through nor does his mind give him relief all.

You are not alone. Keep posting keep waffling. You are not ALONE xxxx
 

Lisame11

New member
Nov 10, 2017
1
Hello all,
I have recently found your site and this forum. My Mum has yet to be diagnosed, but has gone from a few short term memory problems to serious difficulties in the space of a few weeks. She has a memory assessment in 10 days time.
My Dad is currently caring for her and luckily my sister and I live close by.
I came here to find support and advice about how best to help Mum and Dad. Also to increase my understanding of how Mum feels right now.
 

LadyA

Registered User
Oct 19, 2009
13,562
Ireland
Hello all,
I have recently found your site and this forum. My Mum has yet to be diagnosed, but has gone from a few short term memory problems to serious difficulties in the space of a few weeks. She has a memory assessment in 10 days time.
My Dad is currently caring for her and luckily my sister and I live close by.
I came here to find support and advice about how best to help Mum and Dad. Also to increase my understanding of how Mum feels right now.
Welcome @Lisame11
Have a browse around the forum, and join in any ongoing discussions that catch your eye. And when you are ready, you could start a thread of your own, in the "I care for a person with dementia" section. https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/ Just click the "post new thread" button, give your message a heading, and type your message in the box underneath. Then click the "create thread" button.
 

SylviaB62

Registered User
Jun 17, 2017
6
Like you all I have a close family member, my mum, with this horrible condition. We coped athe home for a number of years but eventu ally nearly 7 years ago now had to put the care 9f mum into the hands of others. We have had some terrible care during this time with mum now being in her third home where the care is the best we can hope for. I pray night and day for an end to this living nightmare and a final farewell. I see people who have lost their loved ones being so saddened and I feel for them but I am finding it so hard to carry on seeing mum this way it is heartbreaking and not what she would want at all.
 

pika

New member
Nov 27, 2017
2
Hi
I am also new to the post. My father has Lewy body's Dementia. He is in total Denial. He is bright as a spark during the day and can remembers everything we talked a few days ago but he lives in terror because of his hallucination. They come with the dusk and now also during the day. In the night time, it gets very bad. He has called police several times, running to the street for help in spite that most of the time he can't walk but the fear made him do it. He refuses to go to a home insisting that he is going to be well by January. He sacked various careers and he does not let anyone stay overnight except me or my brother. He thinks we are lying to him and pretending that we do not see people that share his home. He believes we want to declare him insane. It is horrible. He is very reluctant to take medication. Unfortunately, I do not live close by. I am going to see him for a week soon. He refuses to go to a home and no one can make him because social services have declared that he still has full mental capacity.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,532
Yorkshire
hello @pika
a warm welcome to TP
your poor dad to be living with hallucinations - so hard for you being far away so cannot see him all that often
unfortunately it's often the way that the person themselves is reluctant to accept home care visits, and to even consider a move to a care home - and as long as they are deemed to have capacity, any adult is 'free' to make decisions for themselves, including bad ones - if the police are involved, they can make referrals to Social Services, and if your dad becomes a risk to himself, SS can take action
do let his GP know about the hallucinations and their effect on your dad, as there may be meds to help him and the GP does need to have a full picture of your dad's situation
I hope you have Powers of Attorney in place
do start your own thread with anything that's on your mind - members will respond with support and ideas to help
 

Sundog

New member
Nov 27, 2017
2
Canada
Hi all,
my dad who recently passed away had dementia. I am a writer and currently working on a novel in which one of the main characters suffers from dementia. While I feel I gained some insight from my dad into how it is living with the disease, I'm hoping to learn much more about it by reading and also asking some respectful questions in the forums here. What a wonderful resource and support system! I wish everybody a lot of strength, and also lots of good and joyful times.
 

Kevinl

Registered User
Aug 24, 2013
4,774
Salford
Hi Sundog, welcome to TP
Ask away, I'm sure lots of people on here will be happy to help.
I would say that everyone's experience is different and that as we say on here "when you've seen one person with Alzheimer's, you've seen one person with Alzheimer's".
My (now late) Mum had AZ and my now wife does too now and the two experiences (from my point of view) weren't/ aren't anything like each other. It's hard to explain but somehow with a parent in their 80's you kind of expect or accept it as in some way inevitable, that experience in no way prepared me for having my wife diagnosed in her mid 50's. The same experience but totally different to live through.
K
 

Sundog

New member
Nov 27, 2017
2
Canada
I would say that everyone's experience is different
Yes, I'm sure. That's also why I'm looking for more input. I think the disease partly manifests itself differently in different people because no two persons are alike and the surroundings are different. So in order for the character in my book to be well-rounded and believable, I feel I need a broad range of information and expreiences to draw from.

Thank you for the welcome :)
 

Nov

New member
Dec 1, 2017
1
My 91 yr old father has dementia and my mother is his carer, they have been married 66 yrs but he has told her he wants her out the Home. He tells people she is his carer and he is getting rid of her. It is obviously upsetting her and we don’t know where to turn. Any advice
 
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