i need some info.

Kathleen

Registered User
Mar 12, 2005
639
66
West Sussex
Mum was told she had AD by her consultant with us present as she was desperate to find a reason for her agitation, loss of concentration and memory problems.

We thought she would be upset as her own father had suffered a form of dementia, but she was actually relieved to have a diagnosis and was given galantamine to help slow the progression.

It is a diificult choice to make, to tell or not to tell, but in Mum's case it was right to let her know.

We thought Dad did too much for Mum until we realised how little she could do for herself, when she tried to make a drink, for example, she got very upset that it was beyond her to get it right, so making it for her was the kinder option.

When you are an AD sufferer and every day is got through in a confused muddle with "strangers" all around you, saying and doing things you can't always understand, with no way to out, waking you up when you're tired, telling you the stolen item has been moved by you, saying you have been told the answer to that question 10 times already etc etc life must be unbearable, so if the reaction to this world is anger, agitation, tears or lethargy, who are we to judge them.

Yes, we too are tired, worried, irritated and downright fed-up at times, but we know the reason why......AD......the sufferer just suffers.

Kathleen
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Kathleen, what a wonderful reply:

When you are an AD sufferer and every day is got through in a confused muddle with "strangers" all around you, saying and doing things you can't always understand, with no way to out, waking you up when you're tired, telling you the stolen item has been moved by you, saying you have been told the answer to that question 10 times already etc etc life must be unbearable, so if the reaction to this world is anger, agitation, tears or lethargy, who are we to judge them.

Yes, we too are tired, worried, irritated and downright fed-up at times, but we know the reason why......AD......the sufferer just suffers.


I, for one, would not be able to cope in their world. They try our patience, but need our understanding.
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
I absolutely agree with Connie!

Fantastic vision of what it must be like to be the patient.

Good grief, it is hard enough being a carer, the thought of what the person cared for feels is agonisingly daunting. But we have to try and do it, just to keep on track.
 

Helena

Registered User
May 24, 2006
715
I find it very hard to believe in the early stages that any dementia sufferer is actually unaware of their situation

Maybe we all make too many excuses for their odd behaviour and are too scared to say anything so they seldom have to face the reality and manage to slip into the next phase before we realise
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Every day that passes I try to be more tolerant and patient.
When they don't know the answer to a question,when they cannot understand something,they get mad.
So I am verbally abused at the time ,I can take that because I know why it is.
I wish I knew more answers but I don't.
I wish I could bring some peace to my Peg's troubled mind,I am troubled but she must be in torment.
Norman
 

jarnee

Registered User
Mar 18, 2006
181
leicestershire
I'm with you all here. It's tough for me, but goodness only knows what it's like for dad....a proud man who has to ask me to explain a £20 note to him. He looks, "Bank of England...Where's that? do i have to go there to sign for this?"; he worries daily about being able to "pay his way"....."What if this place closes down, where will I go when I have no money?" Iexplain it to him at least five times every half hour, but still he asks.
How scary life must be when you want the reassurance of something that's worrying you and you never know you've had the answer, so you keep searching for it. even though you've had it....and on...and on..and again...and again....and you keep on worrrying and being scared cos you STILL don't know the answer.

Blimey if I can't have the patience to help him & repeat myself cheerfully as if its the first time I've said it, what kind of person am I?

Oh don't get me wrong, I'm certainly no saint and I do get frustrated sometimes, and upset & scared sometimes, even bored by my own answer sometimes (I'm sure my voice is on a loop!!), but I try

I really have no idea what he's going through :confused: :eek:

Jarnee
XXXXXXXXXXX
 

Amy

Registered User
Jan 4, 2006
3,454
Hiya all,

Earlier this week, my 17 year old shouted at me in frustration when I asked where he had been "The beach, I told you, you even wrote it down on the calendar!" I proceeded to tell him how I was expected to remember everyone's social calendar (3 sons and husband), and I was tired and needed a holiday. I did think, is this how mum felt at first? I do know I thought " Just answer the question, dont keep telling me that I have forgotten, I don't need the aggro", and I snapped at my son.

Now I don't think that I am starting with dementia, just a middle aged woman with lots of family and work demands - but it did make me realise the added stress it can cause by saying "I told you earlier", or those times when we try to jog the memory instead of simply giving the answer again, and I understood the frustration and anger felt when someone keeps reminding you that you have forgotten.
Love Helen
 

Michael E

Registered User
Apr 14, 2005
619
Ronda Spain
I think people are different and cope differently.

The question may be what do they know about Alzheimer's in the first place? The brighter more educated will have a some background knowledge and if they take the diagnosis on board will at an early stage, will seek out information. They will then decide to fight or give in. Most will fight to retain their hold on a 'good' life as long as possible I suspect.

The less educated/intelligent/bright - quite sure none of those words are PC but they will have to suffice, will have a vague idea that AD is an illness affecting dotty old women and men as they approach the end of their life. So it cannot apply to the sufferer. They will not research the illness and just see it as something nasty in the woodshed!

In reality how would you go about explaining to a sufferer the stages of Alzheimer's? With great difficulty I suspect?

My wife refuses to accept that there is anything really wrong and the Neurologist feels that to present her with the concept that she has Alzheimer's would be very traumatic for her. She knows she is ill. Is desperately and pathetically lost in every meaning of the word. Cannot understand why she cannot dress herself or find the toilet and knows she is not 'right'. I have tried to explain the problem in terms of a sickness with the short term memory and she appeared to be grateful and understand. She constantly asks 'what will become of me?' and I constantly say I will always see she is OK.. I am not sure that going down the road of telling the unvarnished truth would be efficacious! I think, am almost certain that if I told her the truth about AD she would curl up and die.

Michael
 

taylorcat

Registered User
Jun 18, 2006
171
W.Scotland
Thanks so much for all your replies. I have been slowly reading through them.

Margarita, you mentioned the books, where can I get these from and who is it that sells them ?
 

Margarita

Registered User
Feb 17, 2006
10,824
london
http://www.amazon.co.uk/gp/product/0751537098/026-8856025-7156412?v=glance&n=266239



taylorcat Sorry for not getting back sooner, but I seem to jump from one thread to another & forget. I read in your other thread that your dad gone into respite am pleased to hear that :)


Another good book :eek: :) The Simpllicity of Dementia Huub Buijssen Just arrived today had forgoten I had order it

Helen what is BP you said your mum has had for 20 years ?

That link above says ............Watch the author talk about this book in Windows Media Player format its really good
 
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rummy

Registered User
Jul 15, 2005
700
Oklahoma,USA
My Mom knew something was wrong but in her reality, she believed what her mind was telling her. In her mind, she did not remember, did not know people, and believed her hallucinations were real. That is her reality.

She believed everything in her dimented state was real. Trying to make hers fit ours was the real battle. We told her she had dimentia, it was met with little crossed arms and for a long time she learned to cover so well for herself that people not around her very often thought we were lying about it!

As the disease has progressed, she has been living in terror. She looks at her husband and thinks it is someone else that has come into her house and killed her husband and wants to kill her. Can you imagine waking up to a strange man in the house and being terrified. That was her reality and no talking, convincing, conjoling would make her think otherwise.

The doc said the part of her brain that governs sleep is damaged. Sleeping pills didn't help, just made her unsteady so she would fall. Then she started leaving the house in the middle of the night in her undies. We had to place her in a nursing home where she is now so much better taken care of. She knows all of us including her husband and is safe, secure and never alone. It isn't ideal and we are sad about it but it is better.

I too had to sit on the sidelines watching the pieces of my folks life fall apart. I knew there were things that would help but my Dad was very slow to embrace any of it. He also gave in to my Mom on everything! I knew something drastic would happen and force the issue and it did.

Now, I am noticing some dimentia in him like my Mom had in the beginning. Good Grief !! Again??? He has other health issues so maybe it will never become an issue, I hope not, I don't think I can do this again.

I got off topic, sorry. This disease sucks and I'm so sorry your having to do this with your Mom and Dad. Hang in there, it is going to be a bumpy ride and know TP is a great life preserver.

Debbie
ps, I couldn't get my Dad to read books on the subject, good luck!
 

Helena

Registered User
May 24, 2006
715
Margarita

Theres Helen on these forums and theres also me Helena

My Mother has had High Blood Pressure (BP)for over 20 years usually a precursor for Vascular Dementia (VD)

However I still wonder if Lewy Body Disease is mixed up in her problems because of the major swinging back and forth from oblivion to "near"normal

Nothing I have read about any of the Demantias makes sense when it comes to my Mother but maybe i see something others do not or maybe I am missing something
 

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