Understanding dementia

Officer

Registered User
Dec 1, 2012
4
How has the lack of understanding in the family, or work place to the progress of dementia before diagnosis. And how it can affect the individual after the diagnosis with the lack of knowledge in the workplace, and in the general population
 

Jo1958

Registered User
Mar 31, 2010
3,724
Yorkshire
How has the lack of understanding in the family, or work place to the progress of dementia before diagnosis. And how it can affect the individual after the diagnosis with the lack of knowledge in the workplace, and in the general population
Sorry Officer but I don't understand what you are asking, I'm sure it's just me but could you expand on what you want to know, I understand that you are angry about a lack of understanding about dementia, but ...
 

Officer

Registered User
Dec 1, 2012
4
understanding of dementia

How has the lack of understanding in the family, or work place to the progress of dementia before diagnosis. And how it can affect the individual after the diagnosis with the lack of knowledge in the workplace, and in the general population
The slow initial progress of my front temporal dementia before diagnosis had changed my character to the degree that it cost me my employment, and my family. Nobody recognized the changes for what they they were. I now realize that the changes affecting me had totally changed me in all ways from unable to take verbal instruction to becoming sexually aggressive. Decision making switched itself on, and off at will. This had a huge effect as this capability was very important in my then employment. In my relationship, well after many years of a good marriage I threw it away by becoming aggressive, angry, basically a bad egg.
These changes were so slow both my employers, and my spouse could not in any realize what was going on. And in the end I was left on my own as I was no longer fit for service, and no longer fit to be a family member.
It took a very good friend from my past who could see the changes better because of the time lapse between seeing me. She got the ball rolling, and within three months I had a mri scan, and a diagnosis. The rest is history. The point I am trying to put across is that nobody put the changes to a condition, but to me going off the rails. Nobody thought the changes in my makeup had a history behind them.My employers thought I had lost the plot, and my spouse just thought I had gone off the rails. I may have reasons, but no excuses for my actions, but nobody thought that the changes in my caricature had a reason. My employers of 22 years forced me out, and my marriage of 15 years was blown away.
The point is that nobody understood what was going on, and I just did not care. Only now can I reform my life only because of all the help I have received from the medics, and the Alzheimer,s Society. These conditions need to be made general Knowledge. This would make for an earlier diagnosis, but a better understanding by the rest of the world that would keep families together,and may a place in the world for us all.
 

Jo1958

Registered User
Mar 31, 2010
3,724
Yorkshire
Officer, hello
What a good and moving post, my heart really goes out to you with all the circumstances that have lead to where you are today. I am so glad to hear that you have good support though and are able to realise that none of the changes in your life were your fault but unfortunately were driven by your illness and are part of this disease that went undiagnosed for too long.

Yes, the whole process of diagnosis and understanding of brain damage is a mess, we don't take seriously the impact or progression of diseases that affect the brain in our health service or in society generally and there is much work to be done by researchers and those of us affected to change the outlook for those coming after us in the future.

I do hope that your help and support is good for you now and continues to give you a good and productive life, keep in touch here and you will get help and support.
With kind regards from Jo
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,659
Kent
Hello Officer

Something similar happened to my husband and I really do understand how angry you must be.

He was older than you and retired so at least he didn`t have to bear the brunt of a lack of understanding from colleagues and an employer, as you did.

But I lived with a man who suffered severe personality changes and suffered several years of misery, wondering if our marriage was at an end, was my husband becoming a
`grumpy old man` or were we spending too much time together since we both retired.

Luckily we stayed together but we escaped separation by the skin of our teeth. It was only my fears for my husband`s welfare which made me stay with him.

I do hope as people become more educated about the changes dementia causes, they will have more understanding. We are all working hard to face the facts of dementia and now the media seem to have taken it on board perhaps you and your contemporaries will be the last generation to be so misunderstood.
 

SisterAct

Registered User
Jul 5, 2011
2,255
67
Liverpool, Merseyside
This is one of those threads that makes TP worthwhile......insight.
We really need to educate people so that others do not suffer as Officer has at the hands of this horrible illness.
Polly x
 

Starvin

Registered User
Jan 8, 2013
170
N.Wales
I had a underlying lung condition ...so most changes where blamed on that for many years , as its a slow change people just adjust so you shouldn't be angry with those closest cos most of the time we don't even notice ourselves . I thought I was going mad for for about 2 years what do you tell people or those closest how you feel . Bad , bad illness . I know just how you feel ! Rant all you want here and we will listen. Since talking here I no longer burden my family and more important my wife , X
 

Just thinking

Registered User
May 7, 2008
152
North west
Hi Officer,
This is the trouble with this awful disease in that its so insidious and just creeps up and is not really noticed until the sufferer is well advanced and the signals are starting to become obvious.
There needs to be MUCH more public awareness and the obvious medium for this is the telly! They have adverts to clearly show warning signs of stroke or heart attack but the one for AZ doesn't really highlight the signs. especially early ones. Also, it shows someone elderly and as we all know it's not necessarily confined to old people.
I agree Officer. The world needs to wake up!!!!
 

jeany123

Registered User
Mar 24, 2012
19,036
70
Durham
Officer I am so sorry to read this thread, it is so sad for you to have suffered all of that because of this terrible illness and no-one knowing why, It is a awful disease and ruins lots of lives but if people don't know the symptoms apart from memory loss that is advertised on the TV how will most people ever know , Best wishes Officer,

Jeany x
 

lin1

Registered User
Jan 14, 2010
9,319
East Kent
I agree, far more needs to be done to inform and educate people
on the early signs and symptoms of the various types of Dementia

The adverts on tv need to go much further in explaining it's not just memory that affeced

Officer, I am sorry that you had lost so much before a friend realised that all your changes meant you were ill
it often does take an outsider to see things more clearly
 
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Karjo

Registered User
Jan 11, 2012
481
I have come to realise how much suffering there can be before diagnosis that it makes the final diagnosis almost a relief. But at what stage do we start to look without things being overwhelmed. I can only begin to imagine how you must have suffered for so long with this, not knowing the answer. I think you had such a good friend who recognised this and dared to speak openly to you (a good friend indeed who didn't walk away ) and wonder did she have her own experiences?
It makes me feel quite guilty for the thoughts I had about my mum in the early days. I couldn't understand why she kept falling out with friends, why they couldn't live up to her high standards when she was so lonely but didn't want to see them. of course she had to blame them, because she had no idea it was her. I thought she was attention seeking with her continual demands. I always used to think she would one day try and get me arrested, and indeed she did. as awful as things are now I just need to remind myself of those " good old days".
I am struggling to word this correctly, and this very struggle is making me look at myself suspiciously. If my husband gets in a mood, forgets something, acts out of character I look at him suspiciously and worry about how I would cope with him as well as mum. i worry about how my family would cope if I "caught" it. I worry about my sister who lives on her own in France. How would we know if she has it. I look at work colleagues and sometimes wonder if there is a reason they just told me the very thing I told them the day before. Are they really up to their job of management when they forget so much? So my view of the world has certainly changed and has made me very fearful and anxious, but is this just a result of my experiences or is it how it starts?
As much as an early diagnosis would help and we should look out for symptoms, if we all started looking at every bit of strange behaviour and wondering then we would all be as paranoid as I feel. maybe the ostrich principle is best, ignore it and it will all go away, worrying wont make any difference. I think there are so many horror stories on here that even with a diagnosis things are very hard for most sufferers and their families. "There is nothing to fear except fear itself." If we knew the system was geared up to this horror that is dementia, then maybe I would not feel the same fear as the suffering would not be so great.
Its an interesting post to wonder whether we are getting it right by waiting until things are getting desperate or should we as a society start looking much earlier. Could it turn into a witch hunt with dementia being blamed for everything. With such a lottery as to the help you get anyway and no cure in sight I am not sure I would want the answer. But a lot more education about this and how to cope with the disjointed system we have would surely be of benefit.
I hope i haven't been insensitive here, I am really just writing as I would talk and of course some things may have not even occurred to me, but thats what conversation is about so I am really interested in how useful early diagnosis is. It destroys lives whichever way you look at it.
 

Just thinking

Registered User
May 7, 2008
152
North west
Karjo

I'd simply like to say that if someone, anyone, had been aware of the symptoms then the originator of this thread 'Officer' wouldn't have gone through all the dreadful life changing dilemmas that he did.

Like I said above, we're all well aware of the symptoms of someone having a heart attack or stroke because LOTS of media attention is given to those. Dementia is just a debillitating but also, the sufferers themselves 'know' long before anyone else that something is wrong with them (imagine how distressing that is to be 'so alone')and yet they themselves, perhaps through shame or embarassment, push it to one side or cover up their mistakes making it difficult for others to know.

I WISH I'd known the symptoms when Mum got AZ because I could have helped and supported her so much more. I hate to think that she was suffering in silence simply because of my lack of dementia education!

I don't think we'll become a society of judging everyone who say, flies off the handle or repeats something or makes a mistake as having dementia, as it's generally the people closest to the sufferer and not strangers who see's that there's a problem. Hence, it's VITAL that everyone knows and understands the symptoms so that everyone gets help from their nearest and dearest as soon as possible.
 

benny

Registered User
Dec 7, 2009
290
Central Coast NSW
thank you officer

Thank you Officer for those exact words because it is exactly what seems to be happening to me of late. It seems I dont even have enough sense to mow lawns properly as a job without feeling stupid or having an anxiety attack. And having to ask repeatedly what height to put the blades on, or being told repeatedly to empty the catcher and now they call me jokingly Lucille Ball!!!!! And feeling absolutely stupid in my previous job cause I just couldnt get what I needed to do, but trying to make a joke of it and laughing WITH everyone knowing full well they were laughing at me!!!!

Im feeling exactly how you felt and typing this with tears running down my face as I have just come from the nursing home visiting my mum, feeling the anxiety of making sure I leave before my beloved Dad gets back cause we just disagree so much lately that I plan my day around the time when I know he wont be there cause we argue so much about my mum now it kills me to be in the same room as him as we just argue so much its easier to go when hes not there but previous to this I would never ever speak back to him and I am now 50 and we cant see eye to eye on my mums welfare.

I have been trying to tell my doc and phsycologist that something weird is happening but they dont wanna know do they. I keep telling my family but they think its just a joke, and while they R thinking all that, it just kills me for the weirdness that is happening and you just want to tell them well HEY this is real and the way I am feeling I just dont wanna be a part of life anymore but NO no- one will listen!!!!! I really do know how you must have felt just wish someone would listen to me!!!!! SO GLAD YOU GOT A DIAGNOSIS!!!
 

Redpoppy

Registered User
Jul 31, 2012
268
Glamorgan s.wales
Benny--supporting you

How frustrating it must be for you when you're not being listened to.Fortunately I noticed changes in my husbands ability to do everyday chores and repairs around the house,also his confusion when dealing with finances.All these things he has managed very well untill 2yrs.ago. I went to the GP and explained,but he smiled and said we all get more forgetful as we get older.However after a few weeks I saw him again and my husband was sent to the memory clinic.He was quickly diagnosed with mild dementia and started taking Aricept which really improved his condition,and importantly allowed time for us to sort out our finances etc together.He knows now that I am capable of running the home and taking over the finances should I need to.
Get back to your GP and insist on an appointment at the memory clinic.Should you need treatment you will benefit by starting it as early as possible. Keep your chin up and keep pestering them.Hopefully you may be worrying unnecessarily,but you need reassurance.(I think there IS an online memory test you can take)
 

Karjo

Registered User
Jan 11, 2012
481
Just thinking
having read the thoughts on here I absolutely agree now on early diagnosis, though with everything its an individual matter. Some on here will not even mention the word to their loved ones , even when they ask.
. The suffering without a diagnosis is just awful. And education that dementia just is not being a little bit forgetful is essential. this problem is not going away and we as a society need to really think long and hard about it. confusion that exists and no help given or told its nothing is very cruel and takes power and confidence away.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,659
Kent
Hello Robyn

HEY this is real and the way I am feeling I just dont wanna be a part of life anymore but NO no- one will listen!!!!! I really do know how you must have felt just wish someone would listen to me!!!!!
Please keep returning to your doctor benny, you must be listened to.

Perhaps it would help if you could print out some of your earlier posts on TP and ask the doctor to compare the difference.

I felt shocked and upset to read your latest post and wondered if you are having some form of carer breakdown. You certainly need help and need it quickly.
 

Just thinking

Registered User
May 7, 2008
152
North west
Benny

Get in touch with your local ALZHEIMERS SOCIETY. THEY WILL HELP YOU.
They may even provide you with an advocate to accompany you and give you support.

Someone is listening to you love, ALL OF US ON HERE. :)
NONE OF US are laughing at you.
Please go back to your doctor and insist that they help you.
 

benny

Registered User
Dec 7, 2009
290
Central Coast NSW
Thanks for your support and advise but also thanks for starting this thread Officer I have never been able to express the way I feel until reading your post and the replies it attracted. Afte alot of thinking over the weekend I feel like I am getting closer to sharing my concerns just dont know who that might be with at this stage, but I am toying with the idea of printing my posts and replies to show the doc as well. It seems to be the most overwhelming thing to tell anybody all that needs to be said, and then the anxiety starts and takes over and thats the end of that until next time so thanx TP'ers, think I'm almost there!!!:eek: