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Welcome to Talking Point - introduce yourself here

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Mark_W

Volunteer Moderator
Sep 28, 2015
4,036
London
Welcome to Talking Point :)

This thread is for all our new members to say hello and tell us a little bit about yourself. For example, about your connection to dementia and your reasons for joining.

Just click on the blue "Reply to Thread" button above this post, type your message and click the blue "Post Reply" button to make your first post.

If you've got questions about how to use 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 Talking Point.
  • We also have a Quick Guide explaining how to use 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.
If you just want to know how to post your own thread please read on.

Posting on a small screen
(Click on the images to enlarge them)

Firstly click this link to see a list of our forums: https://forum.alzheimers.org.uk

Then scroll down and chose the most appropriate forum by clicking on it's name.

Forum List Mobile.PNG

When you're in a forum, click on the blue "Post New Thread" button.

Forums Mobile.PNG

Then, type a title, add your message and click 'Create Thread'.

Post New Thread Mobile.png

Posting on a big screen
(Click on the images to enlarge them)

Firstly click this link to see a list of our forums: https://forum.alzheimers.org.uk

Then scroll down and chose the most appropriate forum by clicking on it's name.

Forum List.png

When you're in a forum, click on the blue "Post New Thread" button.

Forums.png

Then, type a title, add your message and click 'Create Thread'.

Post New Thread.png

If you have any questions about using the forum, please don't hesitate to contact the Talking Point team as we're here to help.

We hope you find Talking Point helpful.
 

Pep

New member
Feb 18, 2018
4
Hi, Thank you.
A quick introduction. I'm Dutch, but live in Manchester. My mum lives in Holland and is almost 87.
I see her a couple of times a year and phone her weekly.
I have joined because my mum has Vascular dementia. Not an official diagnoses. I have come to the conclusion myself last year. Everyone else seems to have their heads in the sand or they just don't want to mention the word as it is feels so permanent, a kind of death sentence, too painful, too uncomfortable to admit.
When someone has terminal cancer it also means the end of a life, but the person you have always known is still there until the day they die. With dementia you lose that person while they are still alive. Grieving over someone who isn't dead yet is a strange experience. That's where I am at the moment. It's as if I'm on a roller coaster. I feel extremely sorry for her, but I also feel sorry for myself. I think that is allowed...to be selfish. She is losing herself but she doesn't really know it, I'm losing her and know it all too well.

I found your forum and will do a lot of reading in the coming days. I might not post a lot or I might never stop posting. Who knows. Glad you are all here just in case................:)
 

betty2076

New member
Feb 21, 2018
5
Hello. My father was diagnosed on 13/01 we have known for a while but to have it confirmed was still a bit of a shock. He's been ok with mum looking after him they are 75 & 85. Six weeks ago mum broke her leg badly and it is pinned. She is housebound with a non weight bearing leg until 20/03. His condition has rapidly deteriorated. The three weeks that she was in hospital he was a nightmare. She has been home three weeks and we are all doing our best to nurse her and look after him. We both have full time jobs. I go over at 6.15am and 4.15pm and my sister slots in between. He can no longer do anything. He has to be prompted to was and change clothes . He loses money and forgets everything. The everyday things he could do are now gone. He is angry and resentful that we have to look after mum. He refuses to help. Everyday he reads the diagnosis letter and argues with us about that and that he can no longer drive a car.

At the moment we have two carers for mum . Nothing in place for dad until mum is better then she wants look after him.

The last six weeks have been a nightmare and I know things will get worse. I feel sad and angry and helpless
 

karaokePete

Registered User
Jul 23, 2017
5,262
N Ireland
Hi, Thank you.
A quick introduction. I'm Dutch, but live in Manchester. My mum lives in Holland and is almost 87.
I see her a couple of times a year and phone her weekly.
I have joined because my mum has Vascular dementia. Not an official diagnoses. I have come to the conclusion myself last year. Everyone else seems to have their heads in the sand or they just don't want to mention the word as it is feels so permanent, a kind of death sentence, too painful, too uncomfortable to admit.
When someone has terminal cancer it also means the end of a life, but the person you have always known is still there until the day they die. With dementia you lose that person while they are still alive. Grieving over someone who isn't dead yet is a strange experience. That's where I am at the moment. It's as if I'm on a roller coaster. I feel extremely sorry for her, but I also feel sorry for myself. I think that is allowed...to be selfish. She is losing herself but she doesn't really know it, I'm losing her and know it all too well.

I found your forum and will do a lot of reading in the coming days. I might not post a lot or I might never stop posting. Who knows. Glad you are all here just in case................:)
Hello @Pep, welcome to TP, you will find this a friendly, informative and supportive place. I note that you intend to have a good look around the site and I would urge you to keep posting as everyone will understand your position as we all travel the same road.
You say that you are grieving and this is correct but time heals that and I know that I got through that phase quickly when my wife was diagnosed.
You say that you are losing your mum but that is not completely accurate. Your mum may be disappearing under her symptoms but she will still be there and knowing this is important when it comes to dealing with the disease.
I don’t know the system in Holland, but it is important to seek medical help as whatever facilities for dementia that exist can then be accessed.
I wish you luck.
 

karaokePete

Registered User
Jul 23, 2017
5,262
N Ireland
Hello @betty2076, that is a tough situation that has brought you to TP but I welcome you none the less. You will find this a friendly, informative and supportive place.
I have little doubt that someone with experience will come along to give you advice. However, in the meantime I wonder is you should think about carers for your dad. Have you any contact with your Local Authority Adult Services? They may be able to help on the basis that they have a duty to any vulnerable adult.
Don’t worry too much about the anger etc as this is common. We all understand and will support each other.
 

Pep

New member
Feb 18, 2018
4
Hello @Pep, welcome to TP, you will find this a friendly, informative and supportive place. I note that you intend to have a good look around the site and I would urge you to keep posting as everyone will understand your position as we all travel the same road.
You say that you are grieving and this is correct but time heals that and I know that I got through that phase quickly when my wife was diagnosed.
You say that you are losing your mum but that is not completely accurate. Your mum may be disappearing under her symptoms but she will still be there and knowing this is important when it comes to dealing with the disease.
I don’t know the system in Holland, but it is important to seek medical help as whatever facilities for dementia that exist can then be accessed.
I wish you luck.

Thank you Pete. You are right, I know you are. It is sometimes just hard to feel it that way. She is still under there and she isn't that far gone yet to be honest. With Vascular dementia the decline is very erratic though, which can be confusing. She has very good days and people would not know that anything is wrong. But then she has days where a normal conversation becomes a battleground (even worse over the phone). On top of that she has aphasia, which doesn't make things any easier.
I'm the one who knows her best and I can hear and see little things that aren't right, that don't fit with her normal behaviour. Other people don't notice those as they never been that close to her. All they might notice is that she has become a bit more forgetful and my mum cleverly hides behind her aphasia. I believed at first her changed behaviour was a direct result of the aphasia, but when I started to research her symptoms I discovered that it was Vascular dementia.
I should have mentioned before that she had a mini stroke several years ago and according herself she had one at the beginning of last year. As always she told me that weeks after so I won't worry......or start to give her grief..... Anyway it explained the symptoms.
There are plenty of facilities in Holland. Getting my mum to have an assessment would create WW3 I think. She could teach a donkey something about stubbornness. But who knows she might suddenly become willing. I'm going to visit in a few weeks and I can monitor her for a whole week to see how thing stand at this moment in time. It is hard to assess things over the phone.
 

karaokePete

Registered User
Jul 23, 2017
5,262
N Ireland
Thank you Pete. You are right, I know you are. It is sometimes just hard to feel it that way. She is still under there and she isn't that far gone yet to be honest. With Vascular dementia the decline is very erratic though, which can be confusing. She has very good days and people would not know that anything is wrong. But then she has days where a normal conversation becomes a battleground (even worse over the phone). On top of that she has aphasia, which doesn't make things any easier.
I'm the one who knows her best and I can hear and see little things that aren't right, that don't fit with her normal behaviour. Other people don't notice those as they never been that close to her. All they might notice is that she has become a bit more forgetful and my mum cleverly hides behind her aphasia. I believed at first her changed behaviour was a direct result of the aphasia, but when I started to research her symptoms I discovered that it was Vascular dementia.
I should have mentioned before that she had a mini stroke several years ago and according herself she had one at the beginning of last year. As always she told me that weeks after so I won't worry......or start to give her grief..... Anyway it explained the symptoms.
There are plenty of facilities in Holland. Getting my mum to have an assessment would create WW3 I think. She could teach a donkey something about stubbornness. But who knows she might suddenly become willing. I'm going to visit in a few weeks and I can monitor her for a whole week to see how thing stand at this moment in time. It is hard to assess things over the phone.
My wife has aphasia so I understand your position there. I also understand the good days/bad days.
I have been lucky in that my wife has always been concerned about her health so is very biddable when it comes to getting her to Doctors. When it comes to your situation I have often heard it suggested that the persons GP be asked to call the person in for a 'Wellman/woman' type appointment and then have the check for dementia done as part of the examination. A diagnosis is so important that it's worth a try.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,551
Bristol
Hullo and welcome to TP @Pep. I think Pete just covered more or less what I was going to say, but with my OH the word dementia always conjures up ideas of going crazy and arguing is pointless, so if you can tie any assessment to her stroke and refer to stroke damage rather than anything else it may work. IT works most of the time here.
 

karaokePete

Registered User
Jul 23, 2017
5,262
N Ireland
I forgot to mention @Pep, the diagnosis is important from the point of view of medication. My wife's initial scans showed vascular damage and many of her symptoms pointed towards Vascular Dementia. However, further scans and testing led to a diagnosis of Alzheimer's for which 2 medications were prescribed and on which she is doing very well. These drugs would not have helped with Vas Dem.
 

Pep

New member
Feb 18, 2018
4
Hi pete and sporran.
My mum takes no meds for anything. She is actually pretty healthy for her age. She always takes vitamins and supplements and has done most of her life. She also still used to go to the gym in her 70s.
She has had health issues over the last few years though, but none that really needed long term meds. She had shingles, had a broken ankle 5 years ago, a frozen shoulder, a problem with her heel, an operation for hernias of the bowels. She can only eat small amounts of food since the operation.
She does go to the doctor when she feels unwell, but I don't think she tell us everything. And she is very good at putting up a brave face and skirting around the subject when it doesn't suit her. So unless my sister goes with her into the treatment room we will have to take her word for it.
The doctor doesn't even think her aphasia is that bad. But how would he know, he only sees her for 10-15 minutes at the most. I speak to her for over an hour on the phone.
I have spoken with my mum last time I was in Holland (nov) about her forgetting things, and not just words, and instead of using the word dementia I compared the damage done by the mini-stroke as having a small car crash and a tire with some holes in it. Instead of air some memories escape through those holes. She seemed happy with that explanation. She does know something isn't right with her but doesn't know what it is. She is already depressed enough without telling her she had dementia. I'm not sure if I should tell her.
I haven't even discussed it with my sister yet, not in great depth anyway. We have never been very close, although not arguing. Just very different people and grown apart. Communication has always been an issue in our family. But in the end we will have to discuss it when things get worse, so I will have to wait and see how things pan out in the coming weeks.

Anyway I think I should post on another thread maybe about family issues etc. As I'm a newby I'm not totally sure where to post what info yet, so sorry if I ramble on. I have to familiarise myself a bit more yet.
 

Linzjess

New member
Feb 21, 2018
1
My mum was diagnosed with Alzheimer's a few weeks ago, & basically my sisters & I are feeling very lost
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,008
68
Dundee
My mum was diagnosed with Alzheimer's a few weeks ago, & basically my sisters & I are feeling very lost
Hello and welcome to Talking Point.

I'm so sorry to hear about your mum's diagnosis. I'm glad you have found the forum as I'm sure you'll get lots of help and support here.

I wondered if you have been in touch with your local branch of the Alzheimers Society. You can find out where it is by putting your postcode in this link -

https://www.alzheimers.org.uk/info/20011/find_support_near_you?_ga=2.157782975.407666404.1518717785-555544372.1504370756#!/search

I also wondered if this document would be of any help to you -

https://www.alzheimers.org.uk/info/20111/publications_about_dementia/790/the_dementia_guide

It's good that you have introduced yourself here. Once you've has a look around you might want to think about starting a thread of your own. That way you will keep any replies and support together in one place. Just go to the forum area I Care For A Person With Dementia -

https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/

Once you've done that click on Post New Thread and you can get started. You can ask questions, share concerns - or just have a rant if you want to.

I look forward to seeing you around the forum.
 

Tomsnow

New member
Feb 25, 2018
2
Hello my partner of over thirty years is now in a nursing home with the later stages of dementia, she is only seventy three years of age now I know some of you may think that to be old but when you get there you will probably change your mind I feel that I have been cheated because of the fact she is the love of my life and now although I get a smile occasionally she cannot correspond any more, we had a lovely time together holidays etc before this dreadfull condition robbed us both. I find it difficult to leave after my visits but have gradually become more able to do so ,I shed lots or tears listening to music which we both loved I have no family living near by so I have to cope on my own which isn't a problem as I speak to them all quite frequently. But loneliness is a terrible thing.
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,867
Merseyside
Hello my partner of over thirty years is now in a nursing home with the later stages of dementia, she is only seventy three years of age now I know some of you may think that to be old but when you get there you will probably change your mind I feel that I have been cheated because of the fact she is the love of my life and now although I get a smile occasionally she cannot correspond any more, we had a lovely time together holidays etc before this dreadfull condition robbed us both. I find it difficult to leave after my visits but have gradually become more able to do so ,I shed lots or tears listening to music which we both loved I have no family living near by so I have to cope on my own which isn't a problem as I speak to them all quite frequently. But loneliness is a terrible thing.
Welcome to TP @Tomsnow
You’ll find we have a lot of members who feel the same as you so you’ll get lots of support here.
 

Devon10

New member
Feb 25, 2018
2
Devon
Hello, I've been lurking on Talking point for a while, absorbing and learning from all the wonderful advice and much appreciated experience on the forum. Thought it was time to introduce myself, not least because as this journey goes on there are some questions I think I'll be posting.

My parents both have Alzheimers, formal diagnosis around a year ago, we think about 3 or 4 years into the disease. Mum also has some vascular, dad also has anosognosia, both otherwise healthy, mobile, and currently living at home together with twice daily care visits, and daily ish visits from family. Self funding, and likely to be so for the foreseeable future.

I have a brother who lives a few hundred yards from them, I'm the daughter and live about 25 miles away. We share the care and the coordination, although we both work full time and both have families of our own and financial responsibilities of our own, so like many others we manage help for our parents within some boundaries.

Mum currently has very poor memory, confusion, occasional hallucination episodes and delusion, not able to do day to day tasks like cooking, cleaning, but just about able to dress and wash etc. Stopped driving more than a year ago, forgets to eat and drink which is the main reason for twice daily care. Poor sleep pattern. Mum is generally happy, aware that she is ill, accepts help, although not entirely willingly at least compliant, except for medication which she refuses.

Dad has very poor memory and deeply confused language and conversation, although physically fit, manages most daily tasks including getting food and drink for himself, not cooking though. Still driving. The anosognosia means he is convinced nothing wrong with him, or mum, and less compliant with help, non compliant with medication.

Everyone on this forum knows about the hard parts. I am learning about them as I go, and as the disease progresses. I try to find the joy in this terrible journey, and I think my favourites are sharing beautiful sunsets with my mum, convinced it is the first she has seen every time, and sharing my dad's fantastical explanation of how the universe messes with dates and days, because of course it cannot be Sunday, or February, or 9am, unless someone has messed with time again.

Thank you to this Forum for all the good it does in providing help and support, I look forward to being part of it.
 

canary

Registered User
Feb 25, 2014
11,621
South coast
Hello @Devon10 and welcome to the forum. Im glad you have already found it a help.
It must be very hard when both parents have dementia, though I am glad that they will (reluctantly) accept help.
i must say, I would be very worried about your dads driving, but it is hard to make them stop.

I love your positive attitude and I look forward to see you on the main forums.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,551
Bristol
Good morning and welcome to TP, Devon10. I smiled at your dad's conviction time is messing around, my OH cannot understand how it can be sunny if it's not also warm. She also enjoys little photos I take, and it's so lovely you can share sunsets with your mum.
Have you looked into Power of Attorney yet, we put it off for a while, and AgeUK gave good advice on filling tin the forms.
 

Devon10

New member
Feb 25, 2018
2
Devon
Thank you nae sporran and canary. Yes we have LPOAs in place and registered. So far managed by enabling and supporting, e.g. tax self assessments and shopping, but that stage is almost passed.

Dad's driving, oh my the things we've tried, there's a long story about a "car has broken down" phase. The garage mechanic who was involved in that one is probably still in therapy. Currently trying another route.
 

canary

Registered User
Feb 25, 2014
11,621
South coast
Dad's driving, oh my the things we've tried, there's a long story about a "car has broken down" phase. The garage mechanic who was involved in that one is probably still in therapy. Currently trying another route.
I am assuming that you know that dementia has to be disclosed to the DVLA and they usually only issue a yearly driving license? Is it possible that the DVLA hasnt been told or that he is still driving even if he no longer has a license?
 

JBK

Registered User
Feb 25, 2018
44
Hi I care for my husband who has middle (I think) stage. Would be nice to share experiences & hopefully get answers to my sometimes bewildering questions!
 
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