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Medical Forum / Diseases and Disorders / Alzheimer's / September 2005

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s.valentine - 19 Sep 2005 02:05 GMT
Hi everyone, I have a question . MY husband and I have had my father for over a year. He is in stage 2. Is it normal for them to lie about everything? When my father goes with my sister or brother, he comes back telling me they do not feed him, they take his money and so on. He thinks his grandchildren are going to hurt him. Is all this normal? so.valentine
Gwen Love - 19 Sep 2005 02:49 GMT
 Hi everyone, I have a question . MY husband and I have had my father for over a year. He is in stage 2. Is it normal for them to lie about everything? When my father goes with my sister or brother, he comes back telling me they do not feed him, they take his money and so on. He thinks his grandchildren are going to hurt him. Is all this normal? so.valentine
Mary_Gordon@tvo.org - 19 Sep 2005 03:51 GMT
Its not lies. Its essentially confabulation. He can't recall what
happens, so he makes his best shot guess, based on what his brain can
come up with.

A person with memory or cognitive impairments has no insight into their
own deficits, so they can't figure out what is going on. They can't
review a situation and conclude that their memory is gone, or their
ability to think clearly is slipping.
If your mind has been intact and reliable your whole life, and strange
things start happening around you, are you going to conclude you are
going nuts, or someone is trying to play scary or mean tricks on you?
Most of us would conclude the latter before the former.

What is patently obvious to everyone around  them, they are oblivious
to. They come up with ideas that make no sense to a person with an
intact brain because their reasoner is broken, along with their memory.

So, the last thing you remember is having a wallet full of cash.
Suddenly, you look in there, and there is no money left. You can't
remember having spent it.  You can't figure out where it could have
gone. You can't look in the fridge or the cupboard full of fresh
groceries and figure out you must have bought them recently. Someone
must have taken your money! Your daughter was the last person you
remember in the house. It must have been her!

Or something like....say a person's usual routine Is to take a bath
every Tuesday night of their adult life. If they have no memory what
they did this morning, let alone Tuesday, but are unaware of that
deficit, if you ask them if they had a bath, they say, yes, definitely,
that's what I do every Tuesday. And if you pressed them and suggested
they hadn't taken a bath, they would be insulted and threatened and
upset and dig their heels in even more - because to do otherwise would
be terrifying. They would have to see themselves as totally incompetent
and at sea in a world that makes no sense, totally unable to trust any
perception they have.

When my mother in law was in assisted living, my husband once came
early to take her to a doctor's appointment and ate lunch with her
before they left. When they came back, she had NO memory of having
eaten lunch at all. Nothing my husband could say to her would convince
her otherwise. She wasn't lying. She was genuinely positive she hadn't
eaten.  This put a whole new light on various complaints she'd made
about the facility (i.e. I had called them several times to make sure
they were escorting her to meals, based on her assurances she wasn't
getting fed).

It's pointless to argue with them. You can't correct their impressions
because they have a damaged brain, and all the logic in the world won't
overcome that - and even if you were able to convince them of
something, 1/2 hour later, they would have forgotten the entire
conversation. All you do by arguing and trying to reason with them is
make them upset and yourself exasperated.

Mary
Galena - 19 Sep 2005 05:19 GMT
Holy smokes, Mary,  What a wonderful message!  It made things so much more
clear for me, and I printed it out to show my husband and maybe my daughter
so they can understand more what my Mom is doing when she tells the strange
stories.
I could never have said it so well - thank you.

Galena

> Its not lies. Its essentially confabulation. He can't recall what
> happens, so he makes his best shot guess, based on what his brain can
[quoted text clipped - 50 lines]
>
> Mary
Evelyn Ruut - 19 Sep 2005 10:36 GMT
> Holy smokes, Mary,  What a wonderful message!  It made things so much more
> clear for me, and I printed it out to show my husband and maybe my
[quoted text clipped - 5 lines]
>
> Galena

Mary does explain it well, and we are lucky to have her here :-)

Mary, you should consider writing a book about alzheimers.   To tell you the
truth, I found the 36 hour day a bit boring, but when  you explain things it
is never boring.

Signature

Best Regards,
Evelyn

(to reply to me personally, remove 'sox')

>> Its not lies. Its essentially confabulation. He can't recall what
>> happens, so he makes his best shot guess, based on what his brain can
[quoted text clipped - 50 lines]
>>
>> Mary
Songbird - 19 Sep 2005 15:14 GMT
> Mary does explain it well, and we are lucky to have her here :-)
>
> Mary, you should consider writing a book about alzheimers.   To tell you
> the truth, I found the 36 hour day a bit boring, but when  you explain
> things it is never boring.

I agree, Evelyn. It was too nuts and bolts, especially for someone dealing
with early stages. I'm not ready to deal with incontinence issues and where
to buy adult diapers yet; I'm still trying to figure out why she forgot that
I called her 15 minutes ago and why she can't work the kitchen faucet.

Mary is good at explaining the internal reasoning that goes on for the Alz
(patient? sufferer? victim? with the current refugee/evacuee/survivor
controversy, I'm paying attention to semantics).

If you look back over the posts here, some are of a practical nature (where
do I buy a doormat alarm? how do I execute a POA?) but most are of the
"She's driving me crazy! WHY does she DO that?" variety. How many times have
you (meaning all of us) had to explain to someone that they can't learn new
skills with certainty, they can't process and remember, they don't mean to
be ugly (usually!) but they're scared, etc., etc., etc.

A friend of mine who had Alz (who has now thankfully gone to his eternal and
well-deserved reward) said it's like traveling to a strange country where
they speak a language you never heard before. The money is meaningless (he
would hold out a handful of coins to a clerk for them to select, like you
might in a foreign country), the customs seem strange, and sometimes the
words make no sense. I found this a very helpful analogy.

Songbird
LindaJean - 19 Sep 2005 15:44 GMT
We also are just at the beginning and trying to figure out what my husband
meant or why he did such a silly thing is a constant game. We are waiting
for a return appointment with the neurologist. The ct scan and mri showed
both atrophy re Alzheimer's and a different area with tiny strokes and some
slight damage. If you know of a good book for early stage dementia I would
like to know about it. The 2 books I bought have helped but they didn't give
me too many tips for keeping him calm and things going smoothly now.
LJ

> If you look back over the posts here, some are of a practical nature
> (where do I buy a doormat alarm? how do I execute a POA?) but most are of
[quoted text clipped - 12 lines]
>
> Songbird
Evelyn Ruut - 19 Sep 2005 16:56 GMT
> We also are just at the beginning and trying to figure out what my husband
> meant or why he did such a silly thing is a constant game. We are waiting
[quoted text clipped - 5 lines]
> smoothly now.
> LJ

We found that keeping to the same routine helped a lot, but medication
helped a lot more, in keeping things going smoothly.   Early stages have (I
think) some of the worst challenges to deal with.   In my mother in law's
case she constantly suffered from anxiety and threatened suicide to every
person she talked to.   The doctor put her on Zoloft and that was truly a
miracle drug for her.   It kept her from worrying constantly and from
feeling so down.  Later when she developed compelling delusions, Risperdol
was added to that.

Signature

Best Regards,
Evelyn

(to reply to me personally, remove 'sox')

LindaJean - 19 Sep 2005 17:11 GMT
My husband of 11 months is an Aerospace Engineer and things seem to be
falling apart rapidly right now. I am trying to push the insurance company
to go faster with approvals so that we can get him on some meds quicker. My
husband is mostly lethargic but he has bouts of tears thinking I am cheating
on him or leaving him etc. If they can just take the edge off for him I know
we can cope better. I have learned much by reading in here. Our lives have
calm down a great deal since I stopped trying to get John to make sense when
he is being odd.
I can't tell you all how much help you have already given to me

LJ

> We found that keeping to the same routine helped a lot, but medication
> helped a lot more, in keeping things going smoothly.   Early stages have
[quoted text clipped - 4 lines]
> from feeling so down.  Later when she developed compelling delusions,
> Risperdol was added to that.
Evelyn Ruut - 19 Sep 2005 19:50 GMT
> My husband of 11 months is an Aerospace Engineer and things seem to be
> falling apart rapidly right now. I am trying to push the insurance company
[quoted text clipped - 7 lines]
>
> LJ

Linda, that is what this group is here for, and I am so glad you have found
help here too, as I did and so many others did too.   Going through this
illness with a loved one is horrible enough, going through it alone is even
worse.   This group got me through it, and even though my mother in law has
passed on, I am still grateful to those who gave me good advice here.

Signature

Best Regards,
Evelyn

(to reply to me personally, remove 'sox')

A R Pickett - 20 Sep 2005 04:51 GMT
LindaJean wrote  in part - > I can't tell you all how much help you have
already given to me

And I would like to add my thanks.  I am not even the caregiver on the scene
as most of you are, just someone trying to help my sister from a vantage
point half way across the country as she cares for our father.  Your insight
and empathy are a tremendous help to me in determing how to support her.

So thanks!

Signature

A R Pickett aka Woodstock

"Sometimes the facts threaten the truth"

Amos Oz, prize winning Israeli author

Read my book reviews at:
http://www.booksnbytes.com/reviews/_idx_ws_all_byauth.html

Remove lower case "e" to respond

Songbird - 19 Sep 2005 20:17 GMT
I found this book to be of *some* help: Alzheimer's Early Stages: First
Steps for Family, Friends, and Caregivers by David A. Bennett, M.D.

I checked it out of the library, which no longer shows it in the catalog, so
someone else found it of enough use to *keep*!

But I found it on Amazon.

Songbird

> We also are just at the beginning and trying to figure out what my husband
> meant or why he did such a silly thing is a constant game. We are waiting
[quoted text clipped - 23 lines]
>>
>> Songbird
LindaJean - 19 Sep 2005 20:28 GMT
thanks I will check Amazon for it

LJ

>I found this book to be of *some* help: Alzheimer's Early Stages: First
>Steps for Family, Friends, and Caregivers by David A. Bennett, M.D.
[quoted text clipped - 5 lines]
>
> Songbird
Dennis P. Harris - 20 Sep 2005 03:47 GMT
> The 2 books I bought have helped but they didn't give
> me too many tips for keeping him calm and things going smoothly now.

That's what psychiatrists and neurologists are for:  to recommend
medications to reduce the agitation.  Ask them once they have a
little more info.
LindaJean - 20 Sep 2005 14:02 GMT
Thank you
I was going to wait to ask about meds until the neurologist sends us back to
the GP
Linda

>> The 2 books I bought have helped but they didn't give
>> me too many tips for keeping him calm and things going smoothly now.
>
> That's what psychiatrists and neurologists are for:  to recommend
> medications to reduce the agitation.  Ask them once they have a
> little more info.
Evelyn Ruut - 20 Sep 2005 14:14 GMT
> Thank you
> I was going to wait to ask about meds until the neurologist sends us back
> to the GP
> Linda

Our GP took care of all of that.   I wouldn't wait if I were you.

Signature

Best Regards,
Evelyn

(to reply to me personally, remove 'sox')

Gwen Love - 20 Sep 2005 14:40 GMT
Linda, I would not wait for the GP to prescribe. I would ask the
neurologist.
Gwen

> Thank you
> I was going to wait to ask about meds until the neurologist sends us back
[quoted text clipped - 7 lines]
>> medications to reduce the agitation.  Ask them once they have a
>> little more info.
Dennis P. Harris - 21 Sep 2005 02:40 GMT
> I was going to wait to ask about meds until the neurologist sends us back to
> the GP

most GPs are so poorly informed of dementias and psych meds that
you're better off having the psychdoc or neurologist prescribe.
some forms of dementia have very strange reactions to psych meds
(frontal lobe dementias, for instance) so having a neurologist
familiar with dementias do the prescribing is probably a better
idea.
LindaJean - 21 Sep 2005 02:57 GMT
okay that is an excellent point
LindaJean

> most GPs are so poorly informed of dementias and psych meds that
> you're better off having the psychdoc or neurologist prescribe.
> some forms of dementia have very strange reactions to psych meds
> (frontal lobe dementias, for instance) so having a neurologist
> familiar with dementias do the prescribing is probably a better
> idea.
Evelyn Ruut - 19 Sep 2005 16:53 GMT
>> Mary does explain it well, and we are lucky to have her here :-)
>>
[quoted text clipped - 28 lines]
>
> Songbird

Hi Songbird,

Every stage has its unique challenges, it is true.   I couldn't envision Ida
ever getting to the incontinent, nearly non-verbal stage, and even though
she did become incontinent, she still could make some sense verbally, and
knew who we both were, almost to the end.

So there is always an element of individuality to every person's journey.
We have heard of people here, only just diagnosed who progressed at an
incredible rate, and others who didn't change much over a long time.   What
happens to one, may not happen exactly that way to another.

You mention the money thing.   I recall how horrified my husband was to see
careful, frugal Ida, with a handful of loose $100 bills in the drugstore,
picking up a prescription.   She lived in a bad neighborhood and had a
handbag stolen once already.   He was SO afraid she would be seen, followed,
and maybe even heaven forbid, mugged.   Fortunately that never happened and
we were able to take her here with us to keep her safe shortly thereafter.
But it reminded me of that when you mentioned the man who held out the
handful of loose change, unable to distinguish one amount from another
anymore.
Signature


Best Regards,
Evelyn

(to reply to me personally, remove 'sox')

Dennis P. Harris - 20 Sep 2005 03:45 GMT
> I'm not ready to deal with incontinence issues and where
> to buy adult diapers yet; I'm still trying to figure out why she forgot that
> I called her 15 minutes ago and why she can't work the kitchen faucet.

and the answer is simple:  she can't remember.
Songbird - 20 Sep 2005 14:01 GMT
I know that now, Dennis. I was just giving examples of the questions people
dealing with early-stage patients have.

Songbird

>> I'm not ready to deal with incontinence issues and where
>> to buy adult diapers yet; I'm still trying to figure out why she forgot
>> that
>> I called her 15 minutes ago and why she can't work the kitchen faucet.
>
> and the answer is simple:  she can't remember.
LindaJean - 19 Sep 2005 14:16 GMT
thank you for typing that. It helps me understand

Linda
> Its not lies. Its essentially confabulation. He can't recall what
> happens, so he makes his best shot guess, based on what his brain can
[quoted text clipped - 8 lines]
> going nuts, or someone is trying to play scary or mean tricks on you?
> Most of us would conclude the latter before the former.


Tumbleweed - 19 Sep 2005 09:28 GMT
Hi everyone, I have a question . MY husband and I have had my father for
over a year. He is in stage 2. Is it normal for them to lie about
everything? When my father goes with my sister or brother, he comes back
telling me they do not feed him, they take his money and so on. He thinks
his grandchildren are going to hurt him. Is all this normal? so.valentine

yes, Mary_G has it spot on.

Signature

Tumbleweed

email replies not necessary but to contact use;
tumbleweednews at hotmail dot com

Evelyn Ruut - 19 Sep 2005 10:32 GMT
 Hi everyone, I have a question . MY husband and I have had my father for over a year. He is in stage 2. Is it normal for them to lie about everything? When my father goes with my sister or brother, he comes back telling me they do not feed him, they take his money and so on. He thinks his grandchildren are going to hurt him. Is all this normal? so.valentine

 In a word, yes.   They lie because they cannot remember what really happened.  

 My mother in law used to tell us all sorts of fantastic tales about her quiet little visit to the daycare center.   She told us she'd gone for a ride to NY city (2 and a half hours away!) when all she'd done is gone across town to the center.   She told us that she'd just gone out a few minutes for a ride, when she'd been gone all day.   She'd tell us she hadn't eaten, but the center served a nice big hot meal every day at noon, and she had the dessert still wrapped up in a napkin in her handbag.   They always told us whether or not she'd eaten, because we knew we couldn't count on her for a proper accounting of anything anymore.

 It isn't lying, he is trying to remember, can't, and filling in the gaps the best he can.  

 --

 Best Regards,
 Evelyn

 (to reply to me personally, remove 'sox')
June - 19 Sep 2005 15:15 GMT
My mother would lie too.   Nothing really important it just was easier for
her than trying to figure out the truth.   As others have said just change
the subject or ignore it because anything else would just give you and your
father more grief.......June

Hi everyone, I have a question . MY husband and I have had my father for
over a year. He is in stage 2. Is it normal for them to lie about
everything? When my father goes with my sister or brother, he comes back
telling me they do not feed him, they take his money and so on. He thinks
his grandchildren are going to hurt him. Is all this normal? so.valentine
LindaJean - 19 Sep 2005 15:45 GMT
I am learning to just nod and smile when he says something weird but I do
get frustrated going over the same thing again and again

LJ
> My mother would lie too.   Nothing really important it just was easier for
> her than trying to figure out the truth.   As others have said just change
> the subject or ignore it because anything else would just give you and
> your father more grief.......June


June - 19 Sep 2005 16:15 GMT
Well as a good friend of mine would say "Nobody said it was going to be
easy"   And God knows there's nothing easy for families of this disease.

>I am learning to just nod and smile when he says something weird but I do
>get frustrated going over the same thing again and again
[quoted text clipped - 4 lines]
>> change the subject or ignore it because anything else would just give you
>> and your father more grief.......June
s.valentine - 20 Sep 2005 02:33 GMT
I want to thank you all for your replies, you have helped me so much!!  I
have been reading your posts for about three weeks,  I had no idea there
were so many going through the same things I do , Again thank you all!
                                                        so.valentine
 
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