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Welcome to Talking Point - introduce yourself here

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Shedrech

Volunteer Moderator
Dec 15, 2012
9,049
Yorkshire
hello @ianrut
a warm welcome to TP
there will be a good number of members here who recognise the feelings you describe - so it's good that you have thought to post again and take the chance to chat to folk here
it's great that you are considering some volunteering - have you seen this section on the main AS site
https://www.alzheimers.org.uk/info/20017/volunteering
I volunteer at my local family history society and love the chance to meet and help others with their research - your local library may well have information on opportunities in your area
 

jennywren46

New member
Feb 7, 2018
1
hi im new here...dad was diagnosed with mixed dementia about 2 months ago...some days are better than others with him, although we are still able to laugh about it...joined to get help, support and advise and just to know that others are in the same boat as me
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,797
69
Dundee
Hi @jennywren46 and welcome to Talking Point. I'm sorry to read about your diagnosis but I'm glad you found the forum. I look forward to 'seeing' you around.
 

Obis mum

New member
Feb 2, 2018
8
Hi, I've used this site before but not for some time. I have had concerns about my husband for several years. We have been seen at the local memory clinic three times. Twice by the same doctor (only twice because I insisted, after the first time she wanted to discharge) and then earlier last year by a specialist nurse following a second referral. I have been very unhappy with the way these appointments were handled in that I was expected to say anything I wanted to in front of him. On the first occasion I had taken copious notes which I was only able to surreptitiously thrust at the doctor as we left. I don't feel my notes or anything I had to say was listened to or understood. The outcome of course was that no diagnosis has been made. However my concerns remain, his difficulties have become worse and I'm left in limbo. He has been told he doesn't have dementia so he doesn't recognise his problems. We have recently changed to a new GP who I have spoken to following a terrific outburst from my husband which left me feeling dreadful. He first offered me help which I declined because I feel it's my husband who needs the help. He has proved a very good listener and now wants to see my husband on his own (I usually attend all appointments with him), my husband has agreed to go. I told him it was to talk about his memory problems, he said he won't go to memory clinic again. Since I made the appointment for him he has been compiling a list of things he wants to speak to the doctor about none of which relate to his memory. I don't know if he's forgotten he's supposed to be going about that or not. Since his outburst I've had to give up a lot of things I was doing eg voluntary work and seeing friends. I'm trying to keep things on an even keel by practising methods I've seen on this site. I just really need the medical profession to see beyond the memory tests and recognise that I live with this and he is worse than they realise. Maybe one day they will before I die of boredom!! Thanks for listening.
Hi, memory clinic have discharged my mum, say there is nothing they can do, they did however refer me to ADMIRAL NURSES who are for me ( and siblings ) they have been once and were lovely, can u get them in your area ?
 

Obis mum

New member
Feb 2, 2018
8
Hi There ,
My mums recently been diagnosed with the early stages of alzeimers & when not sleeping , over thinking , i came across this forum . Hoping to get advice and how to cope from people experiencing this same situation . I had suspicions about my mum for a year , conversations we had , repeating or forgetting . Eventually came to a head when my Mums work colleagues raised concerns about her welfare which luckily pushed the doctor appts and the recent memory clinic diagnosis. We are awaiting a brain scan but unfortunately my Mum believes i tricked her, believes shes ok & is ignoring me. I know its part of the illness but im not the strongest emotionally . Though i try to not take it personally , try and be delicate with her but it seems im not in her good books . I cant help but think of the long road ahead but i have grabbed optimism from posts ive read. Im hoping i can hold on to the Mum i love for many years to come & we can fight this thing together
Bless you its so hard, we are about 4 years down the road from you, my mum has accepted her diagnosis and in general is happy, physically she is well, shes 89, she does take most things out on me, but im the one she sees most,her GP referred me to the admiral nurses they are for ME and my siblings, they have been once and are lovely, can u get them in your area? my mum grumbles a lot, I cook/chill for her, im a good cook, she has said so all my life ( im 64 ) but she constantly moans meals are too wet, too dry , to small, too big, etc etc, life is really hard, I do have a lot of help from other family members, at present mums in a housing association flat, I think she needs residential , but only 2 family members agree with me, so im afraid we are just WAITING for something awful to happen, shes wondered 3 times, we have had to isolate the cooker as she was very dangerous, and she is now really struggling with microwave, kettle and toaster ( broken two ) its getting too much for me as im unwell but what choice do I have, best of luck Mipsydoo
 

yorkie46

Registered User
Jan 28, 2014
285
Southampton
Hi and thank you to everyone who has offered advice and support. I think it is so sad that so many of us are in such similar positions with a loved one.
Well the memory clinic appointment arrived this morning. My husband was reading it and told me we are seeing a male doctor this time. He said 'it says that someone who knows me well should come with me'. I told him that I have always gone with him. He said 'I've only been once before'. He didn't believe me that he's been three times before, when I explained he said the usual 'if you say so' which means he doesn't believe me and is intensely annoying but I try to ignore! I went and got out all the paperwork from his previous visits to show him. He then said that he only remembered seeing the first person once. He went on to say that he thought it would be a waste of time like the other times. I tend to agree with him but I always just hope someone will realise what he's like.
He's been quite confused about several things this week. He's been telling me that in the morning he feels he can't breath and isn't getting enough oxygen. He keeps going outside to get some air. I said he'd better see the doctor about it or speak to him on the phone whichever he preferred, he started to get upset and told me not to leave the decision to him! I made a telephone appointment which is due to happen this afternoon. He told me yesterday that he's going to tell the doctor the sleeping tablets he gave him don't work, I said don't forget you're supposed to be telling him about your breathing difficulties. He said oh yes but I think that's because my breathing is so shallow! I've no idea what he's going to say to the doctor or what the doctor will think about it. Yesterday afternoon he asked me if we'd arranged a phone call with the doctor.
When he received his appointment he said he'd be glad when all these appointments are over, you would think he had one every day! He has an eye appointment on 1st March!
So far he isn't having too much trouble with household appliances though he doesn't use them all the time. He sometimes gets confused with the washing machine and today when sorting out his lunch, which I let him do because I think its good for him, he said he's finding he has to think about it more.
I'm not sure yet about writing anything down for the memory clinic, I'm seeing the GP myself next week so will ask his advice. I have had contact with the Admiral Nurses on one occasion but my husband doesn't know. I contacted them myself. I met a lady at my daughters house but to be honest I didn't find it much help. She sent me a relaxation CD and then left the service!!! I don't think that is typical of the service they offer.
Well it's nearly 6pm and were still waiting for the phone call from the doctor. Watch this space.
 

Sassinak

New member
Feb 7, 2018
2
Aberdeenshire
Hi, I'm a Yorkshire lass who has lived in NE Scotland for the last 20 odd years. My husband has Alzheimers and I am deaf and suffer from fairly severe COPD. I have 24/7 home oxygen. I am P's full time carer and from the brief reading that I have done so far, I am astonished at the number of my problems that others have encountered. It is easy to believe that you are unique and it is only happening to you, quite a revelation to find that most of the problems are shared ones. I look forward to reading more
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,797
69
Dundee
Hi @Sassinak and welcome to Talking point.

I'm not a sassenach and I live in the east of Scotland!

I'm sorry to read of your situation but I'm so glad that you've found this forum. There will always be someone around here to listen.
 

LadyA

Registered User
Oct 19, 2009
13,563
Ireland
@yorkie46 you might find it helpful to start a thread in the "I have a partner with dementia" section, here: https://forum.alzheimers.org.uk/forums/i-have-a-partner-with-dementia.69/

You could use it, as many do, to keep track of changes, and ask anything else that occurs, and let people know how things are going. To start a new thread just go to the section where you want to post, eg, "I Have a partner with dementia", At the top, you'll see a button called 'Post New Thread' - click or tap on this.

Add a discussion title and below, add your message. Then click or tap the [Submit thread] OR [Create Thread] button. And don't forget to check the "watch thread" box, so you will be alerted to any responses.
 

Sassinak

New member
Feb 7, 2018
2
Aberdeenshire
Hi @Sassinak and welcome to Talking point.

I'm not a sassenach and I live in the east of Scotland!

I'm sorry to read of your situation but I'm so glad that you've found this forum. There will always be someone around here to listen.
The name is twofold. I have used it on the Internet for a lot of years. Partially because of someone who teased me for being English and partly because one of my all time favourite books is Sassinak by Anne McCaffrey - hence the strange spelling.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,797
69
Dundee
The name is twofold. I have used it on the Internet for a lot of years. Partially because of someone who teased me for being English and partly because one of my all time favourite books is Sassinak by Anne McCaffrey - hence the strange spelling.
Sorry - I wasn't picking you up on your spelling!:oops: I just wanted you to know there are others north of the border who use the forum. I know health and SW systems are different here but I have found the forum a massive support during my years of caring for my mother and my husband. I'm sure you will too. Welcome again!
 

SandyH

New member
Feb 8, 2018
3
Hi my Mother has recently been diagnosed with dementia she is currently trying out a course of tablets from the memory clinic all seemed ok but the last few weeks she has had days and they are only days when her stories have become ridiculous and when these days happen I find this hard to understand and why she says such things some of them are hurtful
 

diab

New member
Feb 8, 2018
1
Hi
It is very likely that my husband will be diagnosed with alzheimers at his appointment at the memory clinic in10 days time although I do realise that we may have to wait for a definite diagnosis. He does not currently know that this is the likely outcome. Should I let the consultant inform him or should I gently prepare the ground. He has recently been discharged after a 3 week stay in hospital with UTI, pneumonia and flu. This was traumatic and exhausting for both of us. My daughter is a consultant psychiatrist but lives in Thailand. We went to stay with her just after Christmas for 2 weeks and she thought he had significant cognitive deficit and said she thought this had been slowly building up for the last few years although I noticed that there was something amiss around 6 months ago but no idea what it was. He has had an MRI and CT scan which show changes. This is devastating and I am still trying to process what this means for both of us.
I am really hoping that by joining this site, it will help me source information and advice from other members in what will an interesting albeit emotional journey ahead.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,793
Bristol
Good morning @diab and welcome to TP. I can imagine how bad a UTI combined with flu must have been, my OH has had both separately in the last month and that took enough out of both of us so both together is so hard.
I don't know the answer to your question, OH prefers not to think about her vascular dementia but knows things are bad after a stroke. She got very scared when she realised she had dementia then went back into denial again. I don't know how your husband will react. I'm sure someone will be able to help, and posting on the "seeking a diagnosis" or the "I have a partner with dementia" forums may get more answers. https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/
Best of luck with the consultant.
 

duluthwyatt

New member
Feb 6, 2018
1
Hello Everyone! It is nice to have found a board where I can speak to and talk to others who are going through, or living with a loved one who is facing this.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,793
Bristol
Hi, just a howdy to ask if anyone else feels the frustration/ guilt cycle?
Good evening and welcome to TP MdeejW. The Guilt Monster as it is known is a common enemy in these parts. Not giving in is the constant battle. What are your frustrations? Mine are based on never being able to plan anything or to get more than a couple of good weeks when we can relax and enjoy life.
Have a good read around and post anything more specific when you feel ready.
 
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