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

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hard times

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meg - 03 Mar 2006 01:41 GMT
My poor Mom is really having a tough time and it's so hard to see her
so unhappy. Just a year ago my Mom was living independently.  Last
March following a string of events my Mom couldn't be left alone
anymore.  We stayed with her in her house until we were able to move
her to assisted living last May.     We had to move her from assisted
living to memory care in November because she got lost 3 different
times from assisted living.   She has hated memory care from the moment
we moved her because all of the other residents in her wing are so much
more disabled than she.  The food is awful, and some of the basic
housekeeping chores she should be receiving fall through the cracks
because she is so independent and doesn't need assistance with
dressing, bathing, or managing her incontinence  (we're working on
these issues with administration).  Unfortunately she doesn't have the
skills to understand or have compasion for her fellow residents and
they just frustrate her to no end.  She was furious the other day
because a visitor wouldn't let her exit the front door (rightly so).
"I'm being held captive." she said and she is, even if it's for her own
safety.  From her perspective that must be very scary.

Until last month my family was wondering if we had done the right thing
by moving her to such a restrictive setting.  But two weeks ago when
she had a sinus infection and her dementia worsened the staff responded
wonderfully, in a way I knew assisted living facilities wouldn't be
able to.    During this most recent illness she started to request to
"go home".    When I tell her she has to stay where she is for a while
she sounds so defeated.

She has always been appreciative of her kids for helping her, but I
think she's beginning to think we're abondoning her and she's beginning
to get angry at us.  She continues to have an awareness of her
diminishing skills and misses being able to cook and clean.  She's very
aware that she's lost her ability read novels and knit, two activities
that always provided comfort for her.  She can still read the newspaper
and enjoys that.  What a way to spend your final years, in such
emotional torment, and we prolong it with all sorts of drugs.

My only hope is that spring is comming and the grounds of the memory
care facility are wonderful with walking paths and lots of
opportunities to garden, one of her favorite activities.  I hope it
helps my Mother feel better.
Lee - 03 Mar 2006 03:40 GMT
one suggestion... why tell her that she has to stay where she is?  Maybe you
can find an approach that she can perceive as positive... i.e.  yes, that
will be wonderful - when you're all better.... and then distract. YOU know
she's not going to get 'all better' ... but IMO there is nothing at all to
be gained by telling her that ... if talking about going home and focussing
on making plans for what she's going to do when... brings her comfort, I'd
say go for it

> My poor Mom is really having a tough time and it's so hard to see her
> so unhappy. Just a year ago my Mom was living independently.  Last
[quoted text clipped - 36 lines]
> opportunities to garden, one of her favorite activities.  I hope it
> helps my Mother feel better.
meg - 03 Mar 2006 04:14 GMT
For the most part, my mother's is not yet at the stage where we can
"fool" her with untruths.  Also, although her dementia became much
worse when she had a sinus infection and she started to ask to go home,
most of the time she is oriented to time and place and knows that her
home is sold.  During the times when her dementia is worse, It seems
better to be vague i.e. "You have stay for now.".  To pacify her, I had
been telling her we'd start looking for another place.  At first the
prospect of moving again was enough of a deterrent for her.  But now
she is starting to perseverate on that idea. My mother can be like a
dog with a bone when it comes to highly emotionally charged thoughts,
she is not really distractable.   It didn't take to long for the aids
in her memory care unit to realize that.  The more you try to distract
her from what's on her mind, the more frustrated and perseverative she
becomes.  it's better to sympathize with her.  That is what is so
horrifying about this disease for her.  She is maintaining an awareness
of her loss of independence and skills.  She's not forgeting what she
used to be like.  But she is losing the ability to cope with the loses.

> one suggestion... why tell her that she has to stay where she is?  Maybe you
> can find an approach that she can perceive as positive... i.e.  yes, that
[quoted text clipped - 44 lines]
> > opportunities to garden, one of her favorite activities.  I hope it
> > helps my Mother feel better.
tvengineering - 03 Mar 2006 12:35 GMT
my moms doctors and nurses told us to be truthful.  This is your new home...
etc....

if you make statements like "when you get well, you can go home", after a
while the AD patient will get pissed off at the doctors for not being able
to diagose the fact that they are well.  It makes the Dr. or nurses out to
be bad guys.

be honest.  After all, it is the best policy.

> For the most part, my mother's is not yet at the stage where we can
> "fool" her with untruths.  Also, although her dementia became much
[quoted text clipped - 67 lines]
>> > opportunities to garden, one of her favorite activities.  I hope it
>> > helps my Mother feel better.
Tumbleweed - 03 Mar 2006 16:19 GMT
> my moms doctors and nurses told us to be truthful.  This is your new
> home... etc....
>
> if you make statements like "when you get well, you can go home", after a
> while the AD patient will get pissed off at the doctors for not being able
> to diagose the fact that they are well.

No they wont, because they'll forget you ever said that before. Thats the
*point* and until you get that telling them the truth will be most unlikely
to be the right thing to do.

> It makes the Dr. or nurses out to be bad guys.

In my *direct* experieince, the Drs and Nurses were the 'bad guys' when they
told my dad the truth, that he was in a ward because he couldnt look after
himself and it was too much of a strain on his wife. He had to be forcibly
restrained and sedated.

> be honest.  After all, it is the best policy.

I'd like to see you try that with my father when he was first placed in a
home.
After you'd had your black eye treated a few times, you'd probably try
saying something else other than 'you are in a home because you cant look
after yourself' because to him, that simply wasnt true, of course he could.
AFAICS from others here, its exactly the same with their LOs.

Signature

Tumbleweed

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

Dennis P. Harris - 04 Mar 2006 04:35 GMT
> if you make statements like "when you get well, you can go home", after a
> while the AD patient will get pissed off at the doctors for not being able
> to diagose the fact that they are well.  It makes the Dr. or nurses out to
> be bad guys.

once you've had more experience with this you will tell the folks
that told you that this was best that they are wrong, wrong,
wrong.  it's best to redirect attention, and if that's not
possible, to simply agree with them if agreement is not harmful.
they may not remember what they were upset about, but they will
connect the upset with folks who are telling them things that
they "know" are "wrong".

> be honest.  After all, it is the best policy.

no, loving deception is often the best policy.  it does no good,
for instance, to tell them in advance about appointments in the
early stages of the disease because they will obsess about it
("why aren't we going to my doctor appointment now?" over and
over, for example).  it's best to "remind" them of it just as
it's time to get ready to go.

if they are having delusions, or think their son is their long
dead husband, it does no good to try to convince them otherwise.
in fact it can be quite harmful to get them upset by doing so.
it's better to simply agree, divert their attention (or get them
some meds to get delusions under control).

it's not kindness to get them upset for no real reason.  far
better to use loving deception to calm them down.
Evelyn Ruut - 03 Mar 2006 13:19 GMT
> My poor Mom is really having a tough time and it's so hard to see her
> so unhappy. Just a year ago my Mom was living independently.  Last
[quoted text clipped - 36 lines]
> opportunities to garden, one of her favorite activities.  I hope it
> helps my Mother feel better.

Hi Meg,

I have always said that these earlier stages are the worst, when the person
is still able to care for themself a bit, but certainly not able to care for
themself completely.    You keep trying to placate her, but there is
absolutely nothing that could possibly placate her, and some frustration and
maybe even anger is normal, and to be expected.

Your mom is still able to recognize that she is in a facility, and knows it
is not the way she wants to live, yet it is the way she must live at this
time.  She is able to have aspirations to go places, but not the ability to
go to them.    She recognizes that her roommates and other patients are in
terrible shape, but she herself is not that bad yet, but how can you tell
her that she will someday get sick like they are, too?

Ultimately I am sorry to tell you that it WILL get easier but that will only
be when her own cognizance begins to wane even more.

I recall very vividly when my mother in law lived with us, and we sent her
to a daycare center during the day.   She was incredulous at the state of
the other people in daycare and would come home and tell us they were all
"crazy" and that she herself was not "crazy".    She had no idea how "crazy"
she actually was or was not, or that her illness was a progressive one, in
which she would continue to lose ground until one day we would be forced to
put her in an alzheimer ward when we could no longer take care of her
ourselves.   We could never tell her that, we just sidestepped the issue to
preserve her dignity for as long as we could.

She too, complained of being detained against her will, and wanted to go
"home."   She would try to bribe the daycare bus driver with her jewelry, or
with promises of money, to take her "home"...... to a home that she could
never go to again, unfortunately.   It was heartbreaking, and it is a
terrible dilemma that every caregiver suffers through with their loved
one..... a time when they are too sick to be alone, and not sick enough to
realize their own deficits.

We felt just as you feel, like we were doing the best we could for her, yet
there was no answer that we could give her, that she would accept.   The
only place I got any comfort was here on this newsgroup, and in our local
alzheimer support group.

I am sorry to tell you that there is no answer to this dilemma, but time.
And when the time comes that she no longer argues to go home, you will wish
she still had some of her faculties like she had now, when she still CAN
argue to go home, and that the people in her ward are indeed worse off than
she is.

All we can do is tell you what we also went through, and that you are not
alone, and that we know how hard it is, and that you have our deepest
commiseration.   This is a rotten illness, where the person you have known
all your life will think you have betrayed them, even when you are doing all
you possibly can to help, with every ounce of strength you can muster.

That is the hardest part, that you cannot reason with them, or explain
things to their satisfaction.  I used to tell my mother in law not to worry,
that we were taking the very best care of her that we could.  She would say
"thank you" but five seconds later she would forget and be confused again.
It is the sad nature of this illness.

Signature

Best Regards,

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

June - 03 Mar 2006 14:43 GMT
> My poor Mom is really having a tough time and it's so hard to see her
> so unhappy. Just a year ago my Mom was living independently.  Last
[quoted text clipped - 36 lines]
> opportunities to garden, one of her favorite activities.  I hope it
> helps my Mother feel better.

It's so sad when you have to become the parent.  I think too that honesty is
best.   When it's time to get my mother to take a shower and she resists I
truthfully and gently  tell her "Mom you have a brain disease that makes you
think you've taken a shower when you haven't"   This always seems to strike
a chord with her and she no longer resists.   Perhaps the truth would help
here.   Telling your mother that she has a  brain disease that is clouding
her judgment might help.  If part of her still knows something isn't right,
it might work.   If it doesn't, just know in your heart that you're doing
the right thing.
You have helped me in a way...my mom is in independent assisted living and I
was afraid that we weren't doing enough to stimulate her mind.  Especially
when I visited her when she was having a particularly bad day.  I was
thinking maybe memory care but after reading your story, I know that she's
better off where she is.   Like my brother says...the owners will tell us
when it's time for her to go to memory care.  I went back again another day
and she was much better and she's always said that she's happy
there.......June
Anthony Shipley - 04 Mar 2006 06:07 GMT
Somebody wrote
>It's so sad when you have to become the parent.  I think too that honesty is
>best.   When it's time to get my mother to take a shower and she resists I
[quoted text clipped - 13 lines]
>and she was much better and she's always said that she's happy
>there.......June

Carers here seem to think that there is one answer for every case, and it's what
they do. I doubt that is in any way correct and yields a worse outcome for the
carer and patient.

For example ".... I know that she's better off where she is".

To me, that sounds more like "I can feel better if I can thing the above."

anthony shipley

Run away with me; I can make you unhappy.
Tumbleweed - 04 Mar 2006 10:25 GMT
> Somebody wrote
>>It's so sad when you have to become the parent.  I think too that honesty
[quoted text clipped - 30 lines]
>
> To me, that sounds more like "I can feel better if I can thing the above."

Since they have seen the Az sufferer in situations X and Y, then I think
they are qualified to say in which one they actually are better off, since
the Az sufferer themsleves certainly doesnt have the capability to make that
judgement.

Signature

Tumbleweed

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

June - 05 Mar 2006 00:07 GMT
> Somebody wrote
>>It's so sad when you have to become the parent.  I think too that honesty
[quoted text clipped - 34 lines]
>
> Run away with me; I can make you unhappy.

You're right;  there's no one size fits all and certainly no easy answers.
Whatever works is best.   Guilt about any of it benefits no one.....June
A R Pickett - 05 Mar 2006 02:00 GMT
Meg wrote in part - > My only hope is that spring is comming and the grounds
of the memory
> care facility are wonderful with walking paths and lots of
> opportunities to garden, one of her favorite activities.  I hope it
> helps my Mother feel better.

I hope so too!  Every little corner of the world is better off with green
and growing things tended by someone like her.

Best wishes to you, your mom and all your family.

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

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