• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Welcome to Talking Point - introduce yourself here

Status
Not open for further replies.

mickyg1000

Registered User
Apr 27, 2017
5
Hi, my name is Mike and my wife has Alzheimers. I am 75 and Diane is 73, she was diagnosed about 18 months ago but has been suffering memory problems prior to that. I find that I have had a steep learning curve about her illness and her condition (and moods) change daily. Looking to share experiences with others and get ideas on how to cope
 

nae sporran

Volunteer Host
Oct 29, 2014
6,579
Bristol
Welcome to TP, Mike. We can all identify with your post, sorry you've had such a hard learning curve with Dementia. Have you had a care needs assessment for your wife and carers assessment for yourself to help with any of the caring responsibilities. That would be my first advice if you have not already spoken to Social Services.
I hope you will start a thread in "I care for a person with Dementia" whenever you are ready to ask for anything specific or just let off steam.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,810
Yorkshire
hello @mickyg1000
sorry to read of your wife's diagnosis
but glad that you thought to come post here on TP - it's certainly a good place to share sympathy and experiences amongst folk who understand
 
Last edited:

Helpless62

New member
Aug 10, 2018
7
Hello. I have rejoined things were tough three years ago and I joined to access hope and advice. I did not use the forum much it was mainly b3cause my mum was driving me insane. Well mum has gone into a care home about 3 months ago she is 95 with vascular dementia and blindness and a load of other problems. FIl has also got Vascular D and blindness but he can walk just aged 89 and MIL is now at end stage Alzheimers Mil and Fil live 70 miles away so the last 4 years and more have been “a journey “ as they say. I have already posted on the end of life forum
 

Linny52

New member
Aug 9, 2018
7
Hi, my mum was diagnosed with dementia yesterday. I first managed to persuade her to see a doctor last September and it has taken until now for a diagnosis, but, the doctor only said dementia and didn't say which type. My mum isn't concerned, she doesn't think there is much wrong only she forgets sometimes, but I think I would like to know, I'm not sure if this is normal or am I being too fussy, wasn't sure if the doctors don't actually mention the words alzheimer's etc to the patient.
 

karaokePete

Registered User
Jul 23, 2017
5,300
N Ireland
Hi, my mum was diagnosed with dementia yesterday. I first managed to persuade her to see a doctor last September and it has taken until now for a diagnosis, but, the doctor only said dementia and didn't say which type. My mum isn't concerned, she doesn't think there is much wrong only she forgets sometimes, but I think I would like to know, I'm not sure if this is normal or am I being too fussy, wasn't sure if the doctors don't actually mention the words alzheimer's etc to the patient.
Hello and welcome to the forum. You have come to the right place for information and support.

The trouble with a dementia diagnosis is that it's impossible to be definitive about the underlying disease until a brain is examined post mortem. Having said that, due to some differences that tend to appear in the early stages it's often possible to make an educated guess, although there can be considerable overlap and no two people are the same. There is an AS Factsheet about the issue and you can find it with this link https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/what_is_dementia.pdf

You can see the full publications list here https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

As to talking to your mum about things there is a great thread with a lot of tips that can be found here https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
 

nellbelles

Volunteer Host
Nov 6, 2008
8,623
leicester
Hello @Linny52 welcome to TP, I’m sure you will find help and support here on the forum
When my husband was diagnosed he wasn’t told anything, so I think it’s not unusual
Have you got LPA for your Mum? if so you maybe able to find out more from the doctor without upsetting your Mum
I am posting the link to the Alzheimer’s society fact sheets if would like to have a read
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
 

Linny52

New member
Aug 9, 2018
7
Thank you nellbells,and karaokepete, for your advice and the links to the fact sheets. I have seen the compassionate communication and do try to follow that, although it is hard sometimes. I will try talking to the nurse next time I speak to her hopefully she may help thank you again it certainly helps to even just write it down on here.
 

Normaleila

Registered User
Jun 4, 2016
731
Thank you for the kind welcome
I am a new member and came across this website after searching for information on dementia. I believe that my mother is suffering from the initial stages after reading the threads posted here and I have also read that I should stay calm and wait for the diagnosis.
My mum is 75 and has shown distinct changes in behaviour this year. She has always been a difficult person, very stubborn and set in her ways. My dad passed away 23 years ago, so mum has lived alone for a long time. Mum is also of Asian origin, the only female of 8 siblings who did not have a proper education. She hardly reads or write English. So, you can imagine the circumstances when my dad passed away. Mum was highly dependent on him. To top that, my sister and I live abroad and my brother in London but he has been alienated by my mother. This may be alot of info all at once, but I really don’t know where to start.
Returning to the present, mum despises my brother and his partner greatly. She blames them of stealing, sharing her house keys with ‘everyone’, sleeping in her garage. She thinks she is being followed and often will not leave the house because there are too many people out there waiting for her. She locks the doors and windows with special mechanisms and can’t understand how ‘they can still get in’. She looks for evidence of theft in the house on a daily basis.
At first we thought it was true, it was awful. We flew over to see for ourselves after hearing stories on the phone that were very concerning. We soon realised that mum is really not well. A few weeks ago we managed to have a case worker over to assess mum. He has written a report but we don’t know what’s in it. I was present during the assessment. Questions were mainly related to mum’s life story, some time was dedicated to her daily life. The case worker mentioned a referral for a scan or MRI. He said he doesn’t think she has dementia. It was more related to thinking and perspective. My sister and I have written about our concerns to the case worker but he works two days per week and is probably buried in work. We have had no feedback since. Yet every day we hear stories from mum on the phone, she often cries, and we feel that the longer she is left alone, the faster she will deteriorate. She is also alone in a 3 bed semi which she wants to sell to downsize. Mum has recently done her will, she keeps saying she knows something is going to happen to her. She is able to make it to the solicitor and back as long as there is nobody outside waiting for her, but then she thinks she is followed on the bus. I noticed the people she points at are random people passing by, living in the area going to work, including the postman. She sees the ambulance often and thinks they park opposite her house and watch her. She thinks the driver is my brother’s partner’s dad. My brother recently had an accident at work and mum said he hurt himself trying to climb her roof to get into her house. He then exited her garage with his partner limping where he was picked up by the same ambulance. After speaking to my neighbour, I discovered that the ambulance was there one night but to pick up somebody living on the opposite side of the road. Mum made her own connections. Mum now thinks that people are using her garage, that they’ve dug a hole in the floor and have buried a body or stolen goods. She can’t sleep due to worry.
Our phone calls get worse and whilst we’re waiting for the diagnosis it is difficult to know how to support mum from afar. Since mum managed to alienate me too due to her behaviour in the past (which now we think could be due to something medically related), it is also a strain on my marriage. It is only recent that she has agreed to see me after about 6 years of silence. I visited her because I do love her, despite everything. But my husband has a different view.
How long does it take to be diagnosed? What sort of accommodation should we think of now? Mum refuses medication, she insists she perfectly well. The GP confirmed it and the case worker said she’s a lovely, sociable person. Nobody has yet diagnosed AZ or dementia. Mum says if she knew she was ill, she would take medication, but she’s fine, so why should she......
Sorry for the long text, I (we) are very confused and worried about how to proceed for mum’s well-being and peace of mind.
Does anybody know of a blood test called urinknees, or something similar. My sister heard this from the GP on the phone but maybe it is misspelt?
Thank you to all for listening.
Hi LuvMum and welcome. This is such a difficult stage. Perhaps you could start a new thread to discuss this further. It certainly could be dementia - my aunt has all sorts of stories about who she sees, who steals from her, who's proposed to her!
As I say, please start your own thread and keep in touch.
 

Chris59

New member
Aug 11, 2018
8
Thanks for the friendly welcome. However, I feel a bit of a fraud now, since the majority of you seem to be doing the hard graft of caring and I 've got it easy looking in an doing it from afar. Will post more later.
garfield3 I'm also "doing it from afar". My Mum lives in Norfolk with my step Dad, I live in Spain, my sister lives in USA. Other family members have responded to crisis situations whilst I visit 3 times a year. I'm constantly feeling guilty that I'm not doing enough, worrying what everyone else is thinking of me!
 

Chris59

New member
Aug 11, 2018
8
Hi, we've been aware of my Mum's Alzheimer's for about 4 years now. I moved to Spain 7 years ago so I visit my Mum 3 times a year. My sister lives in USA and visits my Mum for long stays, last one was for 2 months. My Mum lives at home with her husband, my step dad, who is older than her.He has his own health issues including hearing difficulties. We have set up daily home help visits to help my Mum with personal care and meal preparation. Her husband is not capable as My Mum was always the "carer" to him and his daughters, so he's only had experience of being looked after, not the other way around. I feel increasingly guilty that I'm not doing enough and now there's another crisis and my step dad's family have stepped up. I'm looking for advice on how to get proffesional input into what is the best care plan to put in place for my Mum so I will post in the proper forum as this is meant to be introduction!
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hi, we've been aware of my Mum's Alzheimer's for about 4 years now. I moved to Spain 7 years ago so I visit my Mum 3 times a year. My sister lives in USA and visits my Mum for long stays, last one was for 2 months. My Mum lives at home with her husband, my step dad, who is older than her.He has his own health issues including hearing difficulties. We have set up daily home help visits to help my Mum with personal care and meal preparation. Her husband is not capable as My Mum was always the "carer" to him and his daughters, so he's only had experience of being looked after, not the other way around. I feel increasingly guilty that I'm not doing enough and now there's another crisis and my step dad's family have stepped up. I'm looking for advice on how to get proffesional input into what is the best care plan to put in place for my Mum so I will post in the proper forum as this is meant to be introduction!
I have replied to you on your thread ...but no worries. It doesn’t matter too much where you post! It is easier if you have specific queries on a thread as you will have all the replies in one place, for reference.
 

Debj

New member
Aug 11, 2018
3
My Mum has Alzheimer's. It went undiagnosed for a long time and now appears to be middle stage. I've done my best to care for her but live some distance away but it's getting too much physically and emotionally so found your forum for advice and support.
 

midgit

New member
Aug 13, 2018
4
Hi everyone. I'm so happy to find this site, as most sites seem to be aimed at dementia patient's carers and nothing for the patients themselves. I have done another post but I think I got a bit mixed up and posted it on the wrong page. Anyway, Hello to you all and I look forward to reading the posts on here.
 

karaokePete

Registered User
Jul 23, 2017
5,300
N Ireland
Hello @midgit, welcome to TP. I hope you find the forum a friendly, informative and supportive place.

Now that you have found us please have a good look around the site and feel free to ask questions or join in any existing discussions.
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,004
Merseyside
Hi everyone. I'm so happy to find this site, as most sites seem to be aimed at dementia patient's carers and nothing for the patients themselves. I have done another post but I think I got a bit mixed up and posted it on the wrong page. Anyway, Hello to you all and I look forward to reading the posts on here.
I’ve already replied to your thread. I’ll move it to the right section & you'll find it here.
https://forum.alzheimers.org.uk/threads/concerns-from-the-another-angle.110956/
 
Status
Not open for further replies.