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Medical Forum / Diseases and Disorders / Alzheimer's / April 2006

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Where Should Mom Live?

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Dana Carpender - 24 Apr 2006 18:16 GMT
I'm new here, and I've come hoping to get input from those further along
in this process than I.  Here's the dilemma:

My mom is in the early-middle stages of Alzheimer's -- still knows who
we all are, still can tell you who the President is, can still keep her
self clean and get dressed, but can't be trusted to drive without
getting lost, can't process new information, hallucinates conversations
that never happened, that sort of thing.

Eighteen months ago, my brother and his wife helped mom move from her
home of 15 years, which was a good 45 minute drive from their place, to
a house right around the corner from them (Chicago suburbs).  They did
it largely because the writing was on the wall about mom's driving, yet
she insisted on driving up often to visit, and also because it was clear
she needed someone to keep an eye on her, make sure she got her
medication, do any heavy stuff that needed doing, etc.

At the time, Mom was onboard about all of this, thought it was a great
idea, participated happily in househunting.  But 18 months later she's
sure they moved her against her will, she hates her new house, she
misses her old house and her old town, she's lonely, and she's
increasingly resentful.

We're all aware that what she really misses, mostly, is the days when
she was well and competent and working, but we're also anxious to help
her find some way to be happier.  Except for Alzheimer's, Mom is in
excellent shape, and there's every possibility she'll live another 10,
15, even 20 years (She's about to turn 76.)

Mom recently visited my house for 10 days, then my sister's for another
10 days (a good 2000 miles away -- I live in Southern Indiana, my sister
in San Diego.)  She really enjoyed both visits, and keeps talking about
how she just wants to "live near family."  She also waxes nostalgic
about her cousin who used to have both her mother and MIL living with
her, and how nice it was in the days when "families all lived together."
 The meaning is pretty clear.  (It also hurts my brother and SIL a bit
-- they see her every day, and do a *lot* for her, and she spends a lot
of time with her only grandkids, but she apparently can't see that as
"living near family.")

My sister is willing to add a room and a bath, and let Mom move in until
such a time as that becomes unteneble -- but only if it's really going
to be the solution.  The thing is, Mom's not capable of realizing that
the reason she has such a nice time when she's here, or with my sister,
is that we take the week off, and spend all of our time *doing things
with her.*  If she moves in with one of us, she's still going to be on
her own a lot of the time -- my sister is generally out of the house
nearly 12 hours a day.  We don't want to spend 50K on a room addition,
and move mom all the way across country, only to have her unhappy again.

It has occurred to me that possibly Mom could move to my sister's, and
participate in an Alzheimer's daycare program.

In the meanwhile, I've looked at a very good retirement center just 5-10
minutes from my house.  They have everything from duplex bungalows, for
people who are still independant, through condos with some services and
a dining room residents can eat in  or not, as they choose, through
assisted living -- a one room studio with housekeeping, and all meals in
the dining room, through -- and sadly this will someday be necessary --
a locked-door Alzheimer's ward.  I'm satisified that the place is well
and compassionately run.

I drove mom through the community while she was here, and she thought it
looked very nice, but she's assuming that she'd move into one of the
bungalows.  We're not convinced she can maintain that level of
independence -- she's burned a few meals, and never has figured out how
to use her new oven.  Also, the folks at the center tell me -- and they
know more than I -- that it's better to move people to a greater level
of support than they need, so that as the disease progresses, there are
fewer changes of place and personnel.  Also, if we move her into a
bungalow, then a condo, then assisted living, each move will be a new
sense of loss -- loss of space, loss of independence, loss of her stuff.

Just as worrisome, I'm pretty sure that even if Mom would be okay in a
bungalow, she wouldn't remember to participate in the activities around
the place -- she'd sit in her bungalow and feel lonely.  I think she'd
be better, at the very least, in one of the condos, where she mostly ate
in a dining room, and ran into people, and was reminded of what was
going on.

But even still, within a year or two she'd have to be moved into
assisted living -- again, a hard change.  Part of me thinks we should
just move her into assisted living *now*.  She'd have people around all
the time, eat all her meals with the same people who would, one hopes,
become friends, have someone to remind her about her medication, someone
to gently prod her to participate in activities.;

But she already complains that we made her "get rid of all her things"
when we helped her move to her new house.  (We made her get rid of
fabric scraps from sewing projects thirty years ago, 40 pairs of
worn-out old underwear, 25 ancient toothbrushes, that sort of thing.
But any time she can't find something, she's sure we made her get rid of
it.)  If she moves into assisted living, she really *will* have to get
rid of *most* of her things, and I'm certain she's going to take it
really hard.

Of course, if she moves to my sister's house, she's going to have to get
rid of most of her stuff, too.

Anyway, we're really unsure of what to do.  There really aren't any
happy solutions, the happy solution would be for someone to invent the
Brain Transplant tomorrow.

Thankfully, money is not a big obstacle here.  Mom has a pension and
substantial assets, and while she divorced my dad 20 years ago, he
stands ready to help if needed -- he's the one who would pay for the
addition to my sister's house.

Can anyone with more experience give me any guidance, here?  I realize
this is very long, and I thank you for your patience and help.

Dana
Tumbleweed - 24 Apr 2006 20:32 GMT
> I'm new here, and I've come hoping to get input from those further along
> in this process than I.  Here's the dilemma:
[quoted text clipped - 106 lines]
>
> Dana

Dana,

my personal opinion is that your last thoughts are the correct ones, near
you,
and condo or assisted living. Bear in mind that no choice will be perfect,
or even
satisfactory, you just end up choosing the least-worst option, but I think
you recognise this  :-(

You will probably have to settle for what she is agreeable to of course, so
that might mean the progression of moves you mentioned, but at least they
are all in the same place. And her learning from one to the other will
probably be much less of an issue than you think, one of the most
debikitating aspects of Az is the ability to learn new things, so the fact
she was in a new apt last year wont matter, she'll have forgotten*

Any choice that involves her being on her own all day isnt good, one mistake
and the house will get burned down or she'll wander off somewhere, a strong
point in favour of your choice,so a move into your, or your sisters house is
likely to be of limited duration, eventually she will need  round the clock
'care' which from the sound of it you will be unable to provide.

Finally, Anthony will hate me for saying this, but in the nicest possible
way, you shouldnt take her choices into account too heavily, in the same way
you wouldnt take a 2 year olds wishes to drive, cook or use scissors
unsupervised, and as time goes by her ability to make good choices will
diminish. The mere fact she continued to drive with Az is a sign of this.
Do you have legal and medical POAs?

Good luck and realise how lucky you are that you have the rest of your
family all working together on this.

Signature

Tumbleweed

*last year someone came on here asking about advice for 'simplifying' a
house so an Az sufferer could continue to live alone. It turned out that she
couldn't even learn how the new type of tap (=faucet to you yanks) worked,
let alone the simpler TV, radio etc.

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

A R Pickett - 24 Apr 2006 22:40 GMT
Dana wrote in part - > But even still, within a year or two she'd have to be
moved into
> assisted living -- again, a hard change.  Part of me thinks we should
> just move her into assisted living *now*.  She'd have people around all
[quoted text clipped - 4 lines]
> But she already complains that we made her "get rid of all her things"
> when we helped her move to her new house.

Reading over your entire post several times, my inclination is to endorse
your feeling about assisted living "now"  My father has vascular dementia
after several "mini strokes" and while there are differences from AD, there
are many similarities.  He now lives in a "supported independent" situation
very similar to the retirement complex you describe.  The huge advantage
that I see for him, and can predict for your mother is the continuity of
professional staff AND continuity of fellow residents and activities.  My
siblings and I pay close attention to the comments and recommendations of
the facility staff, particularly those in the medical clinic.  The residents
keep an eye out for each other as well, and there have been several positive
results from his interaction with them.

Based on your description of the facility you mention, I would predict these
advantages would be there for your mother.

And as for "getting rid of her stuff" this is going to be a fairly constant
refrain, at least it is with us.  My dad is completely unable to offer any
workable solutions for what to do with his "stuff"  He insists he will not
get rid of a book, but he has no room for even a tenth of the books he owns.
Most of them are in my basement at the moment - I have room for them, and I
can honestly tell him I have not disposed of them.  I tell him almost every
time we talk that I will be happy to unearth the book he is wondering about
and send it him.  He declines.  Then 2-3 days later here we go again - "I
can't find my old book of Damon Runyan essays, or Horatio Hornblower, or
Ogden Nash, or whomever"  My siblings and I have designed a response to
these inquiries, about books, or mementos, or whatever, and answer the same
way, every time.  It's extraordinarily frustrating for us, but we have begun
to realize that it's an inevitable outcome of his present situation.

Keep us informed.  This group is a wonderful source of support and
informtion.

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

> I'm new here, and I've come hoping to get input from those further along
> in this process than I.  Here's the dilemma:
[quoted text clipped - 75 lines]
> in a dining room, and ran into people, and was reminded of what was
> going on.

(We made her get rid of
> fabric scraps from sewing projects thirty years ago, 40 pairs of
> worn-out old underwear, 25 ancient toothbrushes, that sort of thing.
[quoted text clipped - 19 lines]
>
> Dana
ladylove77 - 24 Apr 2006 22:58 GMT
Dana, it's evident that you, your sister and your dad want to do what is
best for your mother.  Let me warn you that whatever you do, she will not be
happy about it.  She will always want to go "home", and you're right--that
is when she was well and capable, not a place.  Knowing as we do that AD
never improves but rather slowly or quickly can get much worse, almost
overnight at times, it is best to make plans ahead of time, not for the
present.  I'm very inclined to go along with the idea of moving her now to
assisted living very near you, or if not now at least when you do move her.
And she will have to be moved because it is not safe for her to be alone all
day even now.  You have my best wishes as you all work this out.
Gwen

> Dana wrote in part - > But even still, within a year or two she'd have to
> be
[quoted text clipped - 156 lines]
>>
>> Dana
Alan Meyer - 25 Apr 2006 00:15 GMT
> ... He insists he will not
> get rid of a book, but he has no room for even a tenth of the books he owns.
> ...

Books!  Books you say!

Do you mean to say that when I get old and lose it that all the books
I lovingly gathered over sixty years will be "got rid of"???

Ach!  I can't stand it.

Someone please tell me that all those books I accumulated will
become the property of some grandchild who will keep them and
love them and read them and be comforted by them as I was; that
they will become the cornerstone of a library that he or she will build
and treasure and pass on.

Please, don't even mention what will happen to my diary, my book
notes, and all those photographs I've saved.  I don't want to know.

   Alan
A R Pickett - 25 Apr 2006 00:51 GMT
> > ... He insists he will not
> > get rid of a book, but he has no room for even a tenth of the books he owns.
[quoted text clipped - 12 lines]
> they will become the cornerstone of a library that he or she will build
> and treasure and pass on.

Although your reply began in a tongue in cheek style, I detect a very
serious response to my comments about my dad's books.  So I will try to
answer in a thoughtful frame of mind.

By the time we began his move to the apartment where he currently resides,
the "books" had expanded to include (1) about half a dozen large boxes of
water damaged cookbooks and craft instruction books he received when one of
his sisters died.  After the water inundation in his basement occurred, he
had done absolutely nothing to dry them safely.  Neither he nor anyone else
in the family was interested in them even when they were in good shape.

(2) about 30-50 large packing boxes with statistical abstracts of various
worldwide countries/territories dating back some 30 years or longer.  Most
of them were not in English.  these also he received from his sister at her
death.

And in addition, quite a few much loved and repeatedly read volumes.  AND
several hundred "silhouette" type romance paperbacks - also from one of his
sisters.  AND a couple hundred Book of the Month club selections which no
one had ever read.

These were the books he was unable to offer any helpful advice on what
action to take.  The water damaged ones were, obviously, the easy decision.
We regretfully trashed them.  The statistical abstracts and some others were
sold to a used book dealer who amazingly enough thought he might have a
market and was willing to take them.  The paperbacks we donated to a used
book sale for the benefit of a local head start center.  The BOMC and his
loved and read volumes we kept, some in his apartment, some in my
possession.  Since he refuses to "get rid of them" we have kept them.  I
imagine many will go to family members eventually.

My point here, if anyone has managed to read this far ;-)  -  - is that this
would have been so much easier IF (1) he had in his lucid years contemplated
that disposing of some of his possessions would eventually been necessary
and provided us with realistic plans and wishes;  and (2) he had been
willing to entertain a discussion on what options we had when he was getting
ready to move.  The only thing he would say is "my family doesn't get rid of
books."  We easily could have filled his closet space and the small storage
cubicle in the lower level of his apt building several hundred times over.

So Alan - make plans now for your books and let your family know!  Who would
you like to see keep them and think of you as they read them?  Do you have
anything like my dad's useless collection of statistical abstracts from
Tibet and Albania in the years after WWII?  If so, give your family some
helpful advice now!

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
Dana Carpender - 25 Apr 2006 05:15 GMT
>>>... He insists he will not
>>>get rid of a book, but he has no room for even a tenth of the books he
[quoted text clipped - 26 lines]
> had done absolutely nothing to dry them safely.  Neither he nor anyone else
> in the family was interested in them even when they were in good shape.

Eeew.  Black book mold.  Not only unpleasant, but very, very dangerous.
 Avoid at all costs.  Book mold is one of the few genuine physical
risks of the librarian's work.

<snip)

> These were the books he was unable to offer any helpful advice on what
> action to take.  The water damaged ones were, obviously, the easy decision.
> We regretfully trashed them.

Ah.  I'm relieved.

Dana (librarian's daughter, librarian's wife.)
Evelyn Ruut - 25 Apr 2006 01:51 GMT
>> ... He insists he will not
>> get rid of a book, but he has no room for even a tenth of the books he
[quoted text clipped - 18 lines]
>
>    Alan

Alan how true!   My books (and computer) are auxiliary to my brain!   Make
your plans now what you'd want to do with them in case, and put it in
writing so that it is totally and completely clear to your family.   That's
what I am hoping to do  (one of these days!)

Signature

Best Regards,

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

ladylove77 - 25 Apr 2006 02:34 GMT
Alan, I know how you feel.  I have three tall bookcases double lined with
books, a stack on the floor, a box in the family room and have filled three
large bags and taken to others to read and return, plus a stack on top of
the organ and some on the piano.  I really treasure books and I do hope
someone will at least read these before throwing them away!!
Gwen

>> ... He insists he will not
>> get rid of a book, but he has no room for even a tenth of the books he
[quoted text clipped - 18 lines]
>
>    Alan
Dana Carpender - 25 Apr 2006 05:30 GMT
> Alan, I know how you feel.  I have three tall bookcases double lined with
> books, a stack on the floor, a box in the family room and have filled three
> large bags and taken to others to read and return, plus a stack on top of
> the organ and some on the piano.  I really treasure books and I do hope
> someone will at least read these before throwing them away!!

My husband has -- if I'm counting correctly in my head -- nine tall
bookcases in his office, all crammed -- and with Dewey decimal numbers
on all the books.  I have four bookcases full of cookbooks alone, plus a
few more tall bookcases of random stuff.

Geeks rule.

Dana
Anthony Shipley - 25 Apr 2006 07:06 GMT
>> Alan, I know how you feel.  I have three tall bookcases double lined with
>> books, a stack on the floor, a box in the family room and have filled three
[quoted text clipped - 6 lines]
>on all the books.  I have four bookcases full of cookbooks alone, plus a
>few more tall bookcases of random stuff.

What's the importance of the DDNs?

anthony shipley

Run away with me; I can make you unhappy.
Evelyn Ruut - 25 Apr 2006 12:54 GMT
>>> Alan, I know how you feel.  I have three tall bookcases double lined
>>> with
[quoted text clipped - 11 lines]
>
> What's the importance of the DDNs?

If you have enough books, you can always find the one you are looking for.
I don't use the DD system, but rather have them grouped by subject.   In
some subjects I have a lot of books and it drives me crazy when I am trying
to find one for a quote and can't immediately locate it.   Those who use the
system are smart.

Signature

Best Regards,

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

=

Dana Carpender - 25 Apr 2006 18:50 GMT
>>>Alan, I know how you feel.  I have three tall bookcases double lined with
>>>books, a stack on the floor, a box in the family room and have filled three
[quoted text clipped - 8 lines]
>
> What's the importance of the DDNs?

It just makes him happy.  He has a Masters of Library Science.

Dana
ladylove77 - 25 Apr 2006 17:37 GMT
Dana, I used to have bunches of cookbooks---not that I used them but I loved
collecting and looking through them to see stuff that would be good if I
tried it!  Got rid of most of them when we started thinking about moving
from Florida to Montgomery.  Good thing because I really have no room for
them now.
Gwen

>> Alan, I know how you feel.  I have three tall bookcases double lined with
>> books, a stack on the floor, a box in the family room and have filled
[quoted text clipped - 10 lines]
>
> Dana
Anthony Shipley - 25 Apr 2006 02:39 GMT
>> ... He insists he will not
>> get rid of a book, but he has no room for even a tenth of the books he owns.
[quoted text clipped - 15 lines]
>Please, don't even mention what will happen to my diary, my book
>notes, and all those photographs I've saved.  I don't want to know.

Books, Bah!

What about all my nose pickings I've been collecting for all these years?

g,d&r

anthony shipley

Run away with me; I can make you unhappy.
Dana Carpender - 25 Apr 2006 05:31 GMT
I just want to say thank you to all of you who read my incredibly long
post, who have posted incredibly helpful information and thoughts, and
who have been so welcoming.  Clearly, I have come to a warm, welcoming,
thoughtful place.

Dana
Dana Carpender - 25 Apr 2006 05:13 GMT
>>... He insists he will not
>>get rid of a book, but he has no room for even a tenth of the books he owns.
[quoted text clipped - 12 lines]
> they will become the cornerstone of a library that he or she will build
> and treasure and pass on.

Depends on your family, to be sure.  If you've inspired one of your
children-in-law to become a librarian, as my mother inspired my husband,
 and brought up all of your children to be bookworms who married
bookworms, rest assured your collection will be cherished.

Dana
Alan Meyer - 25 Apr 2006 20:24 GMT
> ...
> Depends on your family, to be sure.  If you've inspired one of your
> children-in-law to become a librarian, as my mother inspired my husband,
>   and brought up all of your children to be bookworms who married
> bookworms, rest assured your collection will be cherished.
> ...

I see that my comment on books got a lot of people thinking.

I confess that I also was a librarian at one time in my life.  I
gave it up for computer programming, which pays a lot better,
but I still have a great fondness for books and reading.

I've got about 4,000 of them, most stored in one room.  90% of
them were bought used and cheap.  But they reflect my particular
reading interests better than 100,000 books at the public library
do.

When I go and look at my collection I feel great.  But A. R. is
right.  I need to think about the disposition of things like my
library while I still can.

   Alan
Evelyn Ruut - 25 Apr 2006 21:31 GMT
>> ...
>> Depends on your family, to be sure.  If you've inspired one of your
[quoted text clipped - 19 lines]
>
>    Alan

I have three large bookcases full.  No count available, but there are a lot.
I have decided I am going to go through all my books and first decide if it
is something I am likely to read again, or to consult for reference
material.   Those I will keep.  The rest may be re-homed.   Either as
donations to the library, or to a place where these matters are discussed
and studied.   A handful are just books that I could put out at a yard sale
where they will be the joyful "find" of some lucky person.   A special few I
will keep forever and hope my kids realize they were the best of the best.

Signature

Best Regards,

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

Alan Meyer - 25 Apr 2006 22:42 GMT
> ...  The rest may be re-homed.   Either as
> donations to the library, or to a place where these matters are discussed
> and studied....

One thing to be aware of about donations to libraries is that,
at least at the public libraries around Baltimore, most of the
donated books are pulped, some may be sold, only a few
ever get into the collection.

The reason so few get into the collection is because they have
to be examined, cataloged, stamped, bar coded, and entered
into the computer system, all of which may cost two dollars or
more worth of labor.

It's really a shame.

There may be more use made of the books if they're donated
to a senior center, or some other place that keeps books but
doesn't catalog them, check them out, or track them - just
makes them available to whoever wants to read them on their
honor to bring them back or exchange them for others, or even
just keep them - without worrying about it.

If you do want to give books to a library, ask them first about
what will happen to them.

Unfortunately, I fear that our great-great-grandchildren, if asked
about all this may reply with the questions: "What's a book?
Where do you download it from?"

   Alan
Evelyn Ruut - 25 Apr 2006 23:43 GMT
>> ...  The rest may be re-homed.   Either as
>> donations to the library, or to a place where these matters are discussed
[quoted text clipped - 27 lines]
>
>    Alan

Fortunately a large number of the books I have are on a specialized
subject... Buddhism.   From the local buddhist grapevine I hear that they
are always looking for extra books to ship overseas to countries like
Poland, where these books are in great demand.    I promised to give those
books to the lady who told me about it.

The rest are novels, good ones, some hard covered.   The senior center in
town might be an option.

It may be a possibility that our grandkids may not know what a book is, but
I surely hope not.

Signature

Best Regards,

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

Dana Carpender - 25 Apr 2006 23:53 GMT
> It may be a possibility that our grandkids may not know what a book is, but
> I surely hope not.

I can't see electronic books taking over entirely.  You can't read them
in the bathtub. ;-D

Dana
Evelyn Ruut - 26 Apr 2006 00:00 GMT
>> It may be a possibility that our grandkids may not know what a book is,
>> but I surely hope not.
>
> I can't see electronic books taking over entirely.  You can't read them in
> the bathtub. ;-D

True!
Signature


Best Regards,

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

> Dana
Anthony Shipley - 26 Apr 2006 06:16 GMT
>I can't see electronic books taking over entirely.  You can't read them
>in the bathtub. ;-D

Why not? Paper will be replaced by a waterproof equivalent of a whiteboard --
pretty much like the LCD screen I use.

O, were I much younger!!

anthony shipley

Run away with me; I can make you unhappy.
Karen - 26 Apr 2006 04:47 GMT
2 places I have found that were hungry for used books were urban community
centers and rural public libraries.  Neither has much of a budget for
purchases, both have expressed a desire for used books.

Hubby has asked me to ship his engineering books to a rural public library
that he has talked with over the years.  I figure the freight on shipping
books via "slow boat to China" method will be modest compared to the relief
of knowing I've disposed of them to someone that will want them.

I wish I thought I'd see a day when schools spent even half as much on their
libraries (physical or virtual) as they spend on their sports stadiums.
Don't think I'll live that long, though.  Sigh!
(no particular health problems, I just think Lucifer will be practicing his
ice skating first  :-)

Karen

>> ...  The rest may be re-homed.   Either as
>> donations to the library, or to a place where these matters are discussed
[quoted text clipped - 27 lines]
>
>    Alan
Dana Carpender - 26 Apr 2006 05:14 GMT
> 2 places I have found that were hungry for used books were urban community
> centers and rural public libraries.  Neither has much of a budget for
[quoted text clipped - 4 lines]
> books via "slow boat to China" method will be modest compared to the relief
> of knowing I've disposed of them to someone that will want them.

I recently read -- though I can't seem to summon up the google-fu to
find a link -- about a guy in Brazil, Rio I think, who started a library
for the poor in his house.  He's gotten enough donations that he and his
wife are now living in part of just one room, and he's still taking
more.  Made me want to send him books, though of course mine aren't in
Portugese.

Dana
Anthony Shipley - 26 Apr 2006 06:20 GMT
>Made me want to send him books, though of course mine aren't in
>Portugese.

What's wrong with Africa  -- a fair bit of Portuguese spoken there.

anthony shipley

Run away with me; I can make you unhappy.
Dana Carpender - 26 Apr 2006 07:33 GMT
>>Made me want to send him books, though of course mine aren't in
>>Portugese.
>
> What's wrong with Africa  -- a fair bit of Portuguese spoken there.

But the point was my books *aren't* in Portuguese.  They're in English.
 Not very helpful for a library for the poor of Brazil -- how many of
them speak English?

Dana
Anthony Shipley - 26 Apr 2006 06:13 GMT
>Unfortunately, I fear that our great-great-grandchildren, if asked
>about all this may reply with the questions: "What's a book?
>Where do you download it from?"

Is that so unfortunate?

Downloading is likely to be much cheaper and much more accessable.

anthony shipley

Run away with me; I can make you unhappy.
Dana Carpender - 26 Apr 2006 07:51 GMT
>>Unfortunately, I fear that our great-great-grandchildren, if asked
>>about all this may reply with the questions: "What's a book?
[quoted text clipped - 3 lines]
>
> Downloading is likely to be much cheaper and much more accessable.

Downloading to what?  I don't want to have to sit here at my desk to
read a book, and I don't want to curl up in bed with my laptop.  I don't
want to print out individual sheets that'll smear if they get wet, and
are unbound, if I can spend a few bucks and simply buy a book.

Dana
Karen - 26 Apr 2006 13:29 GMT
I know of one publisher that has sold his books in soft copy form for years.
It's a great boon for people in the military (not much room for books on
subs and ships) and works good for people traveling.  Since my laptop is
used at a desk mostly and I don't have to carry a PDA already, it would just
be something else to keep up with but for those that do, it's handy.

I still prefer paper but I know quite a few that don't.  OTOH, I don't have
to worry about losing my library to a disk crash.  :-)

Karen

---snip---
> Downloading to what?  I don't want to have to sit here at my desk to read
> a book, and I don't want to curl up in bed with my laptop.  I don't want
> to print out individual sheets that'll smear if they get wet, and are
> unbound, if I can spend a few bucks and simply buy a book.
>
> Dana
Adelle - 26 Apr 2006 06:23 GMT
>> ...  The rest may be re-homed.   Either as
>> donations to the library, or to a place where these matters are discussed
[quoted text clipped - 4 lines]
> donated books are pulped, some may be sold, only a few
> ever get into the collection.

Alan,

Is there a library anywhere around Baltimore Co. which does an annual book
sale? I now live in a small town in MA (Chelmsford) which has an annual book
sale as a fundraiser. Collectors come from several neighboring states as
there are usually some special and rare finds amongst the tons of books.
It's a three day event which now pulls in over 25K. They collect books all
year long, sorting and saving until the big event.

And since you are computer savvy, perhaps you could sell some on either
Craigslist or Half.com.

Adelle
BTW -  attended University of Baltimore Law School.
Alan Meyer - 26 Apr 2006 22:43 GMT
...
> Is there a library anywhere around Baltimore Co. which does an annual book sale? I now
> live in a small town in MA (Chelmsford) which has an annual book sale as a fundraiser.
> Collectors come from several neighboring states as there are usually some special and
> rare finds amongst the tons of books. It's a three day event which now pulls in over
> 25K. They collect books all year long, sorting and saving until the big event.
...

Yes, and I have given a lot of books to a library book sale.  That's
also where I've bought a lot of my books.  It works out great for
the library.  Over the course of a year I may bring in 50 books plus
$50 and walk out with 50 books.  The library is left with what it had
plus $50.  I got rid of 50 books I don't want any more and added
50 new ones I want to read.

   Alan
Mary_Gordon@tvo.org - 25 Apr 2006 23:00 GMT
Alan brought up the subject of disposition of his library while he is
still able.

Mary responds: Having been through this with all four parents, and
several other relatives - yes absolutely. Pare down the "things" to the
items you truly love. Think about how much time gets spent worrying
about the "things", cleaning the "things", organizing the "things",
moving the "things" from place to place, etc. etc. I mean, when it
comes down to it, how much of the stuff brings you real pleasure and
joy on a daily basis, and how much is just a big fat burden you feel
obligated to sit on because it belonged to someone you cared for, or it
might be useful someday, or you just don't have the energy to get rid
of it!!

We're going through this yet again with an elderly family friend whose
three sons live in the US (we're in Toronto). Although she was not in
great health, was pushing 80, widowed and alone, she continued to live
in a big three story house crammed to the gills with "stuff", including
her sons childhood junk. And then she had a stroke. Thankfully, she
survived and will go on to enjoy some good years, but she can't live
alone ever again and that house is not practical at all (i.e. she can't
do the stairs, she's isolated socially etc.)  And now everyone is faced
with dealing with the overwhelming mountain of "things" she's got that
she's not up to sorting and getting rid of. Her kids are totally
overwhelmed at the whole idea - to the point where doubtless an
auctioneer will get called in and everything just hauled away beyond a
few precious items just because no one has the time to deal with it
item by item. Even she admits, now that she's living in an assisted
living facility, she doesn't miss much of it. She'd like her photo
albums, maybe an ornament or picture or two, a comfy chair - but the
rest. Feh!

I mean, why do we do this? Why do we feel we have to accumulate and
retain all these things, when what is really important to us are the
people in our lives.

M.
Evelyn Ruut - 25 Apr 2006 23:51 GMT
> Alan brought up the subject of disposition of his library while he is
> still able.
[quoted text clipped - 33 lines]
>
> M.

You are so right, Mary.   The thought of having to put my kids through the
hassle of sorting out all our stuff is awful.   I know I need to do a major
housecleaning and get rid of lots of it.

I was always the one who went to fleamarkets and yard sales for years, and
found so many nice things.   Now it is time to let someone else enjoy some
of them, as I surely have more than I need!

Especially thinking of some of the larger serving ware, etc.   I just don't
entertain like I used to anymore, and when I do we go out!   I have every
sort of kitchen gadget, and use so few of them.

Time to have a big yard sale of my own.   Last time I did that I made $650.
in one day.   There was one antique dealer who came back again and again.
He bought tons of my stuff and sold it in his store for twice what he paid.
Signature


Best Regards,

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

Dennis P. Harris - 26 Apr 2006 05:04 GMT
> I have every
> sort of kitchen gadget, and use so few of them.
>
> Time to have a big yard sale of my own.  

wish i was there...  now that i have a larger kitchen, i can't
get enough kitchen tools!

i spend almost every saturday morning from april through october
looking for stuff.  a lot of my good-as-new kitchen stuff came
from garage sales, like my $5 expresso machine.  last week i
found 2 erector sets for $10!

but it *is* true that many older folks hold on to the stuff
because of both intertia and its sentimental value.  only mothers
would hold on to kids' sports trophies, or their 60 year old
daughter's prom dress, or old parcheesi sets.

i know older men who worked in the building trades who still hold
on to their tools, keeping everything polished and sharpened,
even though they are no longer working.  all those "things" were
a big part of their lives, and as the memories start to
disappear, for a while the objects seem to help them remember.
Evelyn Ruut - 26 Apr 2006 13:00 GMT
>> I have every
>> sort of kitchen gadget, and use so few of them.
[quoted text clipped - 19 lines]
> a big part of their lives, and as the memories start to
> disappear, for a while the objects seem to help them remember.

Dennis I think a lot of it stems from not knowing what to do with these
things.   Often they are still good, functioning, decent items.    Most
people hate to throw away still-good stuff.  I know I do.

Yard sales are the greatest.   I recently got an espresso machine for $10
and a coffeemaker for $3 and a Prada handbag for $3  .... all of those had
never been used at all!   The lady threw in a nice area rug for free, and it
fits perfectly in my laundry room.   I have a houseful of gorgeous art work,
even beautiful oil paintings and such, all from yard sales.

I have pretty good taste and don't mind paying a little better than yard
sale prices for something really good quality if I like it.   You can get
unbelievable deals at yard sales.   I prefer them to flea markets where all
the really undesirable junk ends up... but every now and then you can still
find something worthwhile there too.

About those kitchen tools, keep looking.   The finding part can be lots of
fun!   Too bad you live so far away, I'd let you know when I have my yard
sale :-)

Signature

Best Regards,

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

Dana Carpender - 26 Apr 2006 16:25 GMT
>>>I have every
>>>sort of kitchen gadget, and use so few of them.
[quoted text clipped - 23 lines]
> things.   Often they are still good, functioning, decent items.    Most
> people hate to throw away still-good stuff.  I know I do.

http://freecycle.org.  Greatest idea on the internet in -- well, a very
long time.  I've gotten rid of a *lot* of stuff (and need to get rid of
a lot more.)  I've also gotten some wonderful stuff, including antique
furniture (though I'll have to shell out for upholstery,) a couple of
oak counter stools (I'd priced similar stools at $100 a pop!,) even a
free gas stove for one of my rentals.

> Yard sales are the greatest.   I recently got an espresso machine for $10
> and a coffeemaker for $3 and a Prada handbag for $3  .... all of those had
[quoted text clipped - 7 lines]
> the really undesirable junk ends up... but every now and then you can still
> find something worthwhile there too.

I love yard sales, also the local Goodwill.  Often find really nice
stuff for very cheap.  I just bought a Smithsonian 6-experiment science
project kit for my nephew -- never opened.  Cost me $10.

Of course, there's also the fun of finding really awful stuff and
thinking, "Dear Lord, who paid retail for *that*?!"

Dana

Dana
Alan Meyer - 26 Apr 2006 22:52 GMT
> ...
> I mean, why do we do this? Why do we feel we have to accumulate and
> retain all these things, when what is really important to us are the
> people in our lives.
> ...

I guess there are different reasons for different people and for
different things that we keep.

I'm a sentimental sucker.  I once saw my wife about to throw out
a dress she hadn't worn in over 30 years.  It was hopelessly out
of style though, bless her, she could still fit in it.

When I saw her tossing it I couldn't bear it.  I had so many
memories of her wearing that dress.

It's the same with books for me.  In some ways, you connect
with the authors of the books you read more deeply than you
do with the great majority of people you meet in the flesh.  An
author may spend hours a day for months or years thinking out
what he wants to say to you and how he wants to say it.  He or
she is a person of considerable intellectual ability and with an
ability to articulate his thoughts that is far beyond what most of
us can do.

The really great books take you into other people's minds, and
maybe other cultures, other worlds, other time periods.  I know
that what happens when you read a book happens in your head
and not in the physical object you hold in your hands, but it's
hard to part with the physical object that brought all that to you.

Still, as I say, I'm a sentimental sucker.

   Alan
Evelyn Ruut - 26 Apr 2006 23:12 GMT
>> ...
>> I mean, why do we do this? Why do we feel we have to accumulate and
[quoted text clipped - 30 lines]
>
>    Alan

That's so sweet Alan.
Your wife is a lucky gal!
:-)

Signature

Best Regards,

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

Alan Meyer - 24 Apr 2006 23:16 GMT
I would like to endorse everything Tumbleweed said.

Obviously, I don't know your mother or your family so whatever I
say is just my reaction to your clear and detailed inquiry.  It's
also just one guy's opinion, a guy with some experience of
Alzheimer's but not an expert caregiver by any means.

My first choice for your Mom would be assisted living, a distant
second choice would be the condo.  The bungalow is a far distant
third.

The assisted living has all of the advantages you mentioned.  It
involves one move instead of one followed by another and it
increases the social contact your Mom is likely to have.  Also,
it is possible that your Mom could wind up in a situation where
she has to leave her condo with fewer faculties intact than she
would need to move into ordinary assisted living.

My experience is that if a person is in assisted living, and is
getting by okay, the facility will usually not push to move the
person into locked Alzheimer's care until caring for them in
their assisted living setting becomes too difficult.  However if
a new resident presents serious AD symptoms when coming in, they
will be reluctant to allow the person into ordinary assisted
living but will instead want to take the person straight to their
AD residence.  So, paradoxically, I think it's likely that your
Mom can avoid a locked AD facility for a longer time by moving
into assisted living than into a more independent arrangement.
She may be able to spend more time in the company of relatively
unimpaired elderly people in the assisted living facility than
otherwise.

Another thing I like about moving into assisted living is that
your Mom will be able to meet people and make friends while she
still has more to offer to people.  It can often happen that the
friends a person makes when she moves into a AL facility will
remain friends for a long time, even after her deficits become
more pronounced.

The problems facing you are terribly difficult.  You rightly
don't want to take away your Mom's independence and force her
into greater dependence than she needs.  But on the other hand
you want the best long term solutions.  You don't want to create
a situation where you make one temporary move now but have to
make the next move in a hurry as a result of a crisis, especially
not a crisis where you Mom got hurt.

I'd like to emphasize some of Tumbleweed's advice:

> ... but in the nicest possible way, you shouldnt take her
> choices into account too heavily, in the same way you wouldnt
> take a 2 year olds wishes to drive, cook or use scissors
> unsupervised ...

This was the hardest thing for me to do, to directly contravene
my parents wishes, the people I loved and owed most to in the
world.  But I finally learned that it had to be done.

> Do you have legal and medical POAs?

This is very, very important.  Get powers of attorney _now_,
while your mother is still able to sign them.  Get at least two
people authorized, yourself and one of your siblings, so someone
can make critical decisions if you are on vacation and
unreachable, or if, God forbid, something happened to you.

Don't wait until your Mom can't sign papers and you have to fight
with every bank, insurance company, hospital, doctor, broker,
medical records holder, licensing bureau, etc. to establish that
you have the right to speak for her.

Also, if her assets are complicated, think about simplifying
them.  If she has five brokerage accounts, see about gradually
combining them into one.  If she has five bank accounts - the
same.  You don't want to do things that hurt your mother's
finances, but if you can simplify things, administration will
become easier for you.  It can be a significant time waster
otherwise.

Finally, consider getting a tape recorder and asking your Mom to
talk about her childhood, her parents, other things that she
remembers from her youth.  She may still remember a lot of it and
may enjoy talking about it.  This is something that you or one of
her grandchildren can do that she will like and others in the
family may like too.  If you have a video camera, that's another
way to do some interviews that someone in the family might
treasure down the road - and even that your Mom might like to
look at a few years from now.

Best of luck,

   Alan
Evelyn Ruut - 24 Apr 2006 23:33 GMT
Hi Dana,

I read all the wonderful heartfelt replies you have gotten, and it just made
me more aware of why I like the people on this group as much as I do.   Good
advice, sincerity, and real concern are rare in this world, but abound here.

I cannot possibly add a thing to what the others have said, but I did want
to put my two cents in, saying "ditto" to everyone else, and wishing you
well in whatever you decide.

Alzheimers is a strange disease.  It has its own schedule, and one person
may not be the same as another.  In some individuals it seems to go from
zero to sixty in no time flat, and in others it stays pretty much the same
for years and years.   The one thing is certain though, it does progress and
the person will need more help as time goes on, not less.

One is always playing a delicate balance, trying to placate and preserve the
persons autonomy and personal dignity as much as possible, while trying to
protect them from the loss of cognition that the disease causes, and the
dangers that can come of it.

It is a hard game to play and there are no easy answers, and no "right" way
for everyone.  It is always a case of doing the best you can, knowing the
odds, and trying as much as possible to do the right thing.

Good Luck Dana.  It sounds as though you and your family are thinking this
through very well, and trying to be as caring and fair as possible.   That
is all you can do.
Signature


Best Regards,

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

> I'm new here, and I've come hoping to get input from those further along
> in this process than I.  Here's the dilemma:
[quoted text clipped - 106 lines]
>
> Dana
august - 25 Apr 2006 00:08 GMT
> I'm new here, and I've come hoping to get input from those further along
> in this process than I.  Here's the dilemma:
[quoted text clipped - 106 lines]
>
> Dana

Be aware that rate of decline can be very unpredictable. Hope for the best
but prepare for the worst.
Karen - 25 Apr 2006 02:24 GMT
Dana, everyone else has had great advice.  I thought you might find the
experience of my neighbor of interest.

My neighbor's MIL started having problems taking care of her house, so she
moved in with them.  After a few years, she started telling other family
members how they were mistreating her.  His BIL got very huffy ("No one is
going to treat my Mom shabby!") and moved her into his house in a huff.
Soon, she started telling other family members how he and his family was
mistreating her.  They went through several siblings before they accepted
the obvious pattern (and sheepishly tendered apologies all round).  Please
don't expect any move to make your Mom happier than any other.  She won't
remember what she says she wants and whatever her next situation is, it will
be one that her children forced upon her (at least in her own mind).  As you
note, her unhappiness is based on a situation that, sadly, no one can fix.

Also realize that she may actually be happy until she remembers to tell you
how "dreadful" it is.  Several times, we saw my MIL having a great time
until she realized we were there and then she began the tales of woe about
how bad the food was (we ate there whenever we visited and it was great!) or
how horrible the place was (we stayed in their guest room and it was very
pleasant).

Having been through this situation with my MIL, I can't agree strongly
enough with the comment about getting the legal docs and POAs lined up.
Don't forget to also have the  Medical POA done so the docs can talk to you
without violating privacy regulations.  She may not want you going to the
doc with her, but she won't remember the doc's instructions.  With the
Medical POA, you can talk to the doc on the phone later and keep abreast of
what needs attention.  Also, getting her to complete Living Will now will
help all of you know and honor her wishes when the time comes that she can't
tell you what they are.  She might benefit from an anti-depressant to help
her cope with something that can't be cured but her doc may need to tell her
the new pill is for something else.  Be aware that allowing her to manage
her own medication can be a real problem.  A person with a memory problem
trying to remember to take a pill to help is a logical conundrum.

Good luck!

Karen

> I'm new here, and I've come hoping to get input from those further along
> in this process than I.  Here's the dilemma:
[quoted text clipped - 106 lines]
>
> Dana
Alan Meyer - 27 Apr 2006 05:43 GMT
> ...
> My neighbor's MIL started having problems taking care of her house, so she moved in with
> them.  After a few years, she started telling other family members how they were
> mistreating her.  His BIL got very huffy ("No one is going to treat my Mom shabby!") and
> moved her into his house in a huff. ...

My Dad, who was living in an assisted living residence 1000 miles
away in Florida, once called me up and said four women beat him
up.  He said he couldn't hit back because they were women, but
they battered him.

I immediately called the home and talked to everybody there, but
it was a Friday night, the regular staff was gone, and nobody knew
anything about the incident.  I was looking up phone numbers for
the local police, the state's attorney's office, my relatives in Florida,
and worrying terribly about what was happening to him.  I spoke to
the night nurse, the weekend nurse, the evening and weekend
supervisors.

The next Monday morning I got a call from the assistant director
of the home.  She said, "It wasn't four women, it was two, and I
was one of them.  We didn't beat him up, we told him that he
looked terrible and insisted on washing him and giving him a
shave."

So I called my Dad and said, "Dad, they told me they didn't
beat you up, they just washed you and shaved you."

He said, "Yes.  They biffed me and bumped me.  I didn't like it."

   Alan
Dennis P. Harris - 25 Apr 2006 08:03 GMT
> Anyway, we're really unsure of what to do.  There really aren't any
> happy solutions, the happy solution would be for someone to invent the
> Brain Transplant tomorrow.

you are lucky to have a multi-stage facility near you, and it
sounds like a good choice.  depend on their evaluation of her
condition after a thorough neuro-psych workup including cognitive
skills assessment for placement in the proper facility.

as others have said you have to simply plan for the inevitable,
and recognize that from now on you may have to make decisions
that won't please her.  you have to get used to taking the
parental role because you are the one who isn't impaired, even if
she doesn't recognize that.
Deborah - 25 Apr 2006 18:03 GMT
> I'm new here, and I've come hoping to get input from those
> further along in this process than I.

<snipped family story>

Hi, Dana,

Leroy to the previous replies you've gotten.

One other thing occurred to me -- you say your brother and SIL have
the only grandkids. Has anyone thought about how they might be
affected by your mother moving far away? They may be sad, they may
be glad. (They may be sad they'd be glad.) How about your brother
and SIL? Are they so hurt they're ready to be relieved?
Dana Carpender - 25 Apr 2006 18:58 GMT
>>I'm new here, and I've come hoping to get input from those
>>further along in this process than I.
[quoted text clipped - 10 lines]
> be glad. (They may be sad they'd be glad.) How about your brother
> and SIL? Are they so hurt they're ready to be relieved?

I don't think they're so hurt they're ready to be relieved, but I do
think they're frustrated with everything they do for Mom being met
mostly with resentment and unhappiness, and I can't blame them.  They
really just want her to be happy, but as we've mentioned, that's not
going to happen.  And if mom is going to resent anyone who is, in
reality, trying to help her, it's time for her to resent people who get
paid to be resented, and work in shifts, and can't take it personally.

As for the grandkids, they've seen Mom a lot ever since they were born,
and Mom and my nephew, the older child, have always had an especially
close relationship.  Indeed, it's separating mom and the kids that
worries me most; I can see her really missing them, and I'm sure they'll
miss her, too -- and it's a six-hour drive from their place to mine.
We've talked about finding a facility near them, but A) there's nothing
as comprehensive as the place near me, and B) money is simply going to
go a *lot* further in Southern Indiana than it is in the Chicago
Suburbs.  Them moving down here isn't an option; my SIL is very close to
her mom, who is in the area.

I assume that sooner or later Mom won't remember she even has grandkids,
but taking that away from her sooner than necessary is a hard decision.
 OTOH, she has recently said that she and the kids aren't as close as
they used to be -- she feels this way because my brother and SIL aren't
having her babysit anymore.  Mom doesn't understand that this is because
they simply can't trust her to remember "911" in an emergency; she
thinks it's because they don't like her as much as they used to.  Very,
very sad.

Dana
Deborah - 25 Apr 2006 23:42 GMT
<snipped>

> Mom doesn't understand that this is because
> they simply can't trust her to remember "911" in an emergency; she
> thinks it's because they don't like her as much as they used to.  Very,
> very sad.

Dementia sucks eggs! Sorry you had to show up here, for the obvious
reasons.

One of the most challenging things I've had to deal with has been my
mother's hostility toward my dad, who has the vast bulk of her care and
absolutely refuses to consider much help outside the family. No appeals to
logic or emotion have succeeded, to date. At least your family members are
open to practical alternatives -- that alone will spare much collateral
grief for all concerned, even for your mother, though she'll most likely
never be able grasp it.

You certainly seem to have thought through your options thoroughly and
objectively, Dana. Most of us -- not all -- don't meet the challenge with
so much grace under fire, but there's always someone here willing to
"listen" and pitch in when support is needed.

Best,
Deborah
 
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