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Medical Forum / Diseases and Disorders / Alzheimer's / August 2008

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The 36-Hour Day

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Lynn Lynn - 10 Aug 2008 04:43 GMT
I've seen a couple of posts here about The 36-Hour Day and it sounds
like something I need to read.

I'm going to check with the book store tomorrow and if not in stock will
order it.

I don't think I have cried so much in my whole life as I have these past
few months.  I look in the mirror and I don't see the same person I was
not long ago.

Never know from one day to the next what to expect - go to sleep at
night (finally) wondering what the following morning will bring.

I know I am not telling you anything you don't already know.

Just thanks for listening AND thanks for mentioning the book!

Lynn
Lynn Lynn - 11 Aug 2008 03:15 GMT
Went to Barnes & Noble today and got the book!  

I've only read a couple of chapters but already "see the light"!

I'm a little tired tonight so will get more into the book tomorrow.  (A
little tired?? A LOT tired.)

Thanks for the recommendation!

Lynn
Evelyn - 11 Aug 2008 12:11 GMT
> Went to Barnes & Noble today and got the book!  
>
[quoted text clipped - 6 lines]
>
> Lynn

That book is a "must read" for anyone who is a caregiver.  I know that
I found it to be a great help.

Evelyn
brianna_1938 - 12 Aug 2008 20:20 GMT
>Went to Barnes & Noble today and got the book!  
>
[quoted text clipped - 6 lines]
>
>Lynn
Hi Lynn,
I ordered the book online because I don't really have a chance to go to
Barnes &Noble.  We can hardly wait to read the book.

Does someone in your family have Alzheimer's?

Bri
Lynn Lynn - 13 Aug 2008 03:44 GMT
Bri wrote:

"I ordered the book online because I don't really have a chance to go to
Barnes &Noble. We can hardly wait to read the book.
Does someone in your family have Alzheimer's?"

I just moved my 91 year old Mother in with me who has the beginning of
dementia.

She does not get violent at all but her mind slips back and forth.  She
sometimes thinks there are three "girls" with my name and gets confused
as to which one she is talking to.

She has spent many times in my house previously but gets sp confused
where she is.

Sometime ago I read about Sundown Syndrome and I can tell what time it
is by some of the things she is saying.  It's amazing.

To make matters worse, she cannot hear well at all even with aids and
has the start of macular degeneration.

It hurts so much to know that she doesn't realize her daughter is taking
care of her.  I cry a lot.  Hopefully this book will ease some of the
pain.  I was too tired to read today as I didn't get much sleep last
night.

At least I don't feel alone anymore since I found this group.  Thank you
all for being here!

Lynn
Evelyn - 13 Aug 2008 04:01 GMT
> Bri wrote:
>
[quoted text clipped - 27 lines]
>
> Lynn

Lynn,

A cyber hug for you..... (((((((( Lynn )))))))))

Caregiving is perhaps the most difficult thing you will ever do, but
it is also very rewarding in many ways.    I was able to make peace
with my mother in law and we even developed affection for one another
during that time.

I'm glad that book has been helpful for you.  It was for me also.

Evelyn
perkens - 13 Aug 2008 18:59 GMT
Dear members,
My sister told me about another wonderful book:
Learning to Speak Alzheimers by Joanne Koenig Costa
It is a fantastic book and I recommend it to anyone dealing with alzheimers.

Pam

> Bri wrote:
>
[quoted text clipped - 27 lines]
>
> Lynn
Carolina Songbird - 14 Aug 2008 02:25 GMT
> To make matters worse, she cannot hear well at all even with aids and
> has the start of macular degeneration.

Lynn, I hate to tell you, but that may be part of Alzheimers as well. My
mom has excellent hearing, but she doesn't always understand what you
say to her -- she can't process the meaning of the words. So she will
say she can't "hear" you.

Macular degeneration is distressing, but my understanding is that most
forms do not progress quickly, and she may lose her ability to read and
comprehend before she loses her vision. Mom "reads" the same book all
the time. She has been on page 136 for about nine months now. <G> When
we were cleaning out the house I asked my aunt if there was anything she
would like to have. She asked for that particular book (which has a
large section on one of our ancestors). I told her she could have it as
soon as Mom finished reading it. <G>

You have to have sense of humor about these things to keep from crying!

Songbird
brianna_1938 - 17 Aug 2008 21:42 GMT
>Bri wrote:
>
[quoted text clipped - 27 lines]
>
>Lynn

Hi Lynn,

I read the book and it seems like I can see all the things my brother-in-law
does or does not do.

He keeps saying he wants to go home to Texas so my sister made reservations
to go.  The reservations are on Amtrak because she felt she could handle him
better and take him to the bathroom.
So today, he does not want to go because he said she stole all his money and
doesn't have any to go.
He even said she had something going with his brother and they both kept his
money.

I wish you the best of luck with your mother. I know it must be very
difficult to move her into a home.  But keep checking on her all the time she
will get good care.

Bri
Evelyn - 18 Aug 2008 00:21 GMT
> >Bri wrote:
>
[quoted text clipped - 51 lines]
>
> - Show quoted text -

Brianna, traveling with a person who has alzheimers is pure hell.   A
couple of years ago a woman was lost in an airport.   She went to use
the bathroom, or her traveling companion went to use the bathroom, and
the woman just disappeared.   I don't know if she was ever found, I
never noticed whether there was a followup in the paper.

Your sister would be wise not to go on any real trips with him.   He
could wander off, or make some bizarre claim that she was kidnapping
him and he didn't know who she was and she took his money, or
something like that.    By the time it got all sorted out it could be
very difficult and stressful for her.

The only way I would consider traveling with someone with cognitive
issues, would be with two extra people to spell one another if one
went to the bathroom or had to sort out something with tickets or
etc.  And with a letter from the doctor stating clearly that the
person had alzheimers.   And even then I wouldn't want to do it.

Once I took my mother in law on a little car trip to visit my family
in the next state.  It was only two hours away.   My husband had some
work to do around here and I thought it would be good to keep her out
of his hair.   Well she forgot who I was!!!!!!!!!   She was very
difficult and made the whole trip a complete hell.   I had to turn
around and go home after only having just arrived.

I didn't even dare to stop for an instant, she was so difficult.  I
got back home sick and exhausted out of my mind.   She told my husband
she didn't know who that woman was who took her home (me)!!!!!  She
yelled at me all the way home.   I thought she might even try to
wrench the wheel from me.   It was scary.

That was the last time I took her on any kind of a trip without my
husband along.  Never again.   Please tell your sister it might be a
very bad idea.

Evelyn
deerwoodflower@hotmail.com - 18 Aug 2008 00:46 GMT
> > >Bri wrote:
>
[quoted text clipped - 90 lines]
>
> - Show quoted text -

Evelyn,
 That reminds me of when my sister was gonna take my mom home for a
week.110 miles away and soon after getting home they had to turn
around and bring her back. Barb
A R Pickett - 18 Aug 2008 18:54 GMT
Evelyn wrote in part - >Brianna, traveling with a person who has alzheimers
is >pure hell.   {another partial snip} Your sister would be wise not to go
on any >real trips with him."

In my retirement, I work part time at our local major league baseball
stadium.  We have an established routine for locating lost individuals
and/or misplaced parents/escorts.  The most scary are the times we are
trying to find an Alzheimer's patient who, for whatever reason, has been
left to his/her own devices for a time - often for 5 minutes or less.

One particular afternoon, the staff heard repeated requests over the radio
to locate a woman, now on her own, who suffered from Alzheimers.  We had
detailed descriptions of what she was wearing.  A flowered skirt and a
purple top.  Our team colors are purple and black.  Can you guess how many
women of late middle age come to the ball park wearing flowered skirts and
purple tops?  Hundreds.  It was 3-4 hours before someone spotted her
wandering around alone.

She was finally located in one of the luxury seating areas, clear across the
stadium from her ticketed seat, without a ticket for the area where she was
found, and how she evaded the ushers who check tickets for persons arriving
in that area remains a mystery.  The staff of the assisted living area who
brought her to the stadium were quite concerned, and also mystified on how
she eluded their supervision.

This event, which fortunately had a happy ending, scared me quite a bit.
This woman had come, in a group, with several trained staff members
supervising, and with other attendees at the game in the group.  She still
managed somehow to wander away, she did not have a ticket with her, and was
unable to answer staff questions when they did find her.  This, of course,
was the important fact which put her back in the company of the supervising
staff from her facility.

Contemplating your sister, on her own, away from home, with her own needs to
eat, sleep, visit the bathroom seems as Evelyn said - a trip to pure hell.
Remembering my own level of discomfort that afternoon at the ballpark, when
I didn't even know the person we were looking for makes me regard the
prospect as a nightmare.
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

Now blogging!
http://www.journalscape.com/woodstock/

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Dennis P. Harris - 18 Aug 2008 06:45 GMT
> He keeps saying he wants to go home to Texas so my sister made reservations
> to go.  The reservations are on Amtrak because she felt she could handle him
[quoted text clipped - 3 lines]
> He even said she had something going with his brother and they both kept his
> money.

tell your sister that HE CANNOT REASON and she needs to stop
attempting to reason with him.  his brain is broken, and he is
incapable of making any rational decision.  she needs to make all
the decisions now, whether he likes it or not.

AD patients often express a wish to "go home".  what they want to
do is return to the time and place where everything made sense
and they felt safe.  the best she can do is try to make him feel
safe.

she really should get him some meds to help with his delusions
and relieve all the distress that they are both encountering. she
should discuss this with his doctor, along with strategies for
giving him medication in food or drinks if he won't take it.
 
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