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Medical Forum / Diseases and Disorders / Alzheimer's / June 2007

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how did you finally do it?

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MEH - 08 Jun 2007 21:38 GMT
My sisters and I have been aware and carefully watching our mother, who
lives alone, and has been dx'd with Alz.  She is to the point where she has
no idea what day it is, often doesn't grasp the time, has forgotten what's
real vs what she wants to remember, etc.

We have an assisted living facility chosen but have no idea when we will
have to move her there. She flat out will not move voluntarily and has
become increasingly mean and nasty to us when we visit. We ignore it, change
the subject, etc to keep the peace, knowing she can't help herself.

With this in mind, she will not go voluntarily to a home. *How* do you move
her??  Do you walk in and say, "We decided you're moving today, let's go."
NOT, I'm sure - but how?  This is going to suck SO bad - for her more than
us. She'll be so upset to be moved. The place is very nice, nicer than her
house and she'll have people there to be with her all the time, but she
won't get close to considering any of that.

What if she resists and it's time?  Is there some service that helps you?
Call the police?  I have no idea what to do about this :(

Guidance, please - you all seem SO good at that!

TIA,
   Mary - another one ;)
Evelyn Ruut - 08 Jun 2007 22:25 GMT
> My sisters and I have been aware and carefully watching our mother, who
> lives alone, and has been dx'd with Alz.  She is to the point where she
[quoted text clipped - 20 lines]
> TIA,
>    Mary - another one ;)

Hi Mary,

We never told my mother in law we were taking her to a facility, and I would
wager that most of the people here also did not with their loved ones.   We
just took her on some ruse.   The reason being that they tend to obsess
about things, and of course they are terrified of change.   They seldom
understand it is a change for the better, or that they are finally going to
get regular baths, clean sheets, a proper medication schedule and many nice
activities every day.    So you don't tell her the truth.   A ruse is best.

On this newsgroup we don't refer to this kind of thing as a lie.   It is
loving deception, and there is a big difference.    When you are dealing
with an organic brain disease that robs a person of their reasoning
abilities and their memory, and is characterized by obsessive behavior etc.
you can't really sit down and reason with them.   All it does is tax their
already stressed out mind, so they dig their feet in and say "no" from fear
of the unknown.    You have already seen this, apparently.

So you might have to be the kind one and do her thinking for her.  Getting
permission from her is probably not going to happen.   But you know it is in
her best interest.   So you don't tell her that you are taking her to a
nursing home to live.  Instead you could tell her that the doctor wants her
to go to a hospital for some tests and that it is important and she has to
go.

If there are a couple of sisters that can help with this, then good.   Maybe
two of you can take her for her "tests".    We told my mother in law we
would take her home if she got better (and if some miracle happened we
surely would have!).   Of course we knew, sadly, that she wasn't going to
get better, but it did lend itself toward her cooperating with physical
therapy etc.

In any good facility that cares for alzheimer patients, they are very good
at dealing with all the confusion that may result when she gets there.
They will spend time with her, focus on her, and do all to make her feel
comfortable.   All you'll need to bring initially is a change of clothes for
that next day.   You can go to the house and pack her clothing and the
things she will need afterwards.    Some like to decorate their room in
advance, with some things they love.  But be aware that in a facility that
is dealing with many people, all of whom have memory issues, they don't know
what is theirs anymore, and a lot of things tend to "walk".

Within a very short period of time my mother in law simply accepted that she
lived there and didn't remember being anywhere else, but she always kept
asking to go home.   On some level she knew she wasn't healthy and accepted
that she was there because of that.

Signature

Best Regards,

Evelyn

Dennis P. Harris - 09 Jun 2007 01:11 GMT
> We never told my mother in law we were taking her to a facility, and I would
> wager that most of the people here also did not with their loved ones.   We
[quoted text clipped - 3 lines]
> get regular baths, clean sheets, a proper medication schedule and many nice
> activities every day.    So you don't tell her the truth.   A ruse is best.

what she said (the entire post, not just this quote).

my mother actually signed the paperwork but died before she moved
(she had multiple health issures).

but i was prepared to do what previous posters have recommended
in this group --- don't tell the LO that you're moving her.  have
someone take her out for a long drive that ends at the new
facilities.  in the meantime, your helpers have packed up her
favorite chair, some clothes, family pictures, her favorite
quilt... and gone to the home and decorated her room before her
arrival.

the home's staff will know how to assist you with this.  they
will be able to distract her while you leave.  they often
recommend that you stay away for a week or so so that she gets
used to the surroundings and routine, and over her anger.

and if she has any jewelry of value, DON'T take it to the home,
put it in safekeeping.  AD folks frequently hide things and
forget where they put them, or give them away and forget that
they did.  Patients in homes always seem to be wearing stuff
belonging to others.  If she wants jewelry, give her some nice
costume jewelry.
Evelyn Ruut - 09 Jun 2007 01:25 GMT
>> We never told my mother in law we were taking her to a facility, and I
>> would
[quoted text clipped - 33 lines]
> belonging to others.  If she wants jewelry, give her some nice
> costume jewelry.

Absolutely!  Not to sound like a mutual cheering section around here, but we
all sort of are?  We have all seen one another through this, with all its
ramifications.

Oh, and when you clean out the house....make sure you check every pocket or
old handbag.   You never know what has been stashed where.   My mother in
law was famous for that.  She'd hide something and quickly forget where she
hid it.

Signature

Best Regards,

Evelyn

Dennis P. Harris - 09 Jun 2007 07:02 GMT
> Oh, and when you clean out the house....make sure you check every pocket or
> old handbag.   You never know what has been stashed where.   My mother in
> law was famous for that.  She'd hide something and quickly forget where she
> hid it.

after my great aunt went into assisted care at age 98, we found
silverware and silver coins (quarters, mostly) stashed all over
her house (my mother had changed her SS check to direct deposit
after finding several in the fridge).  the exterminator found a
mouse nest that included a shredded $5 bill, so we opened all the
chair cushions and carefully searched the furniture & heating
ducts, but didn't find any more.
Adelle - 10 Jun 2007 17:05 GMT
>> We never told my mother in law we were taking her to a facility, and I
>> would
[quoted text clipped - 33 lines]
> belonging to others.  If she wants jewelry, give her some nice
> costume jewelry.

My MIL still hasn't found camera equipment that my FIL hid because he was
afraid of 'the people who came in at night and moved things.' He then swore
the stuff was stolen by those same 'people who came in at night.' Later his
obsession was so great that he kept locking all the doors (including screen
doors), even while we were just on the front steps or in the backyard
playing and could see us. He saw, but didn't perceive, didn't remember we
belonged there.

Imagine what it would be like if your world just didn't make sense anymore.
You know it should make sense, so you try to find reasons for all the odd
things in your world. Any change, even a small one such as a new item in the
house, throws off those carefully created scenarios which help you know what
is happening around you.

Now, imagine someone has told you it is time to move to a whole new place.
You can't really understand why such a move is necessary (can't remember the
reasons. Couldn't integrate them, even if you could remember them). All you
know is that in the place you are now, you are barely holding on to a thread
of understanding of where everything is, and what you are supposed to do. If
you move, you will have no frame of reference whatsoever.

How can you possibly figure out things in a whole new place, with new items,
new people, new schedules, new spaces you won't recognize? How will you
remember where the toilet is? How will you know who is supposed to be there
and who is not? How will you find food and attend to basic needs and keep
yourself safe?

That's why it is more cruel to try to explain the move and prepare a loved
one with dementia (much less ask them and make them part of the decision)
than it is to simply move them. It is more respectful to understand the
mental limitation and do things which mitigate emotional distress than it is
to make decisions for them and just make them do things. Just like you don't
let a toddler decide where they will live and where they will play. You have
the mature and well functioning brain. Your loved one has a brain which is
regressing in its ability to function.

There is one caveat to this - in my FIL's case, he had a frontal lobe
dementia. The abilities go away differently. His memory and ability to
understand and be articulate (not just speak, but speak about things in
sophisticated ways, even as he 'lost' specific words) stayed. And if a
memory was coupled with strong emotion, it was ironclad. But the executive
function was gone. The safeguards which say something isn't socially
acceptable, or isn't appropriate, or too extreme given the stimulus, was
gone. If he didn't want to cooperate, he could become belligerent and even
violent. To avoid a violent reaction we needed his cooperation and
acquiescence. We told him that the doctor was insisting he go to this place
until he was well enough to go home. It worked, as he was of the generation
of doctors knew best.

Yes, he asked to go home. But home wasn't the ranch house he shared with his
wife, it was to a time and place where the world made sense and felt safe.

Adelle
MEH - 10 Jun 2007 21:41 GMT
> Hi Mary,
>
[quoted text clipped - 6 lines]
> many nice activities every day.    So you don't tell her the truth.   A
> ruse is best.

I absolutely agree about saying it's something else, but isn't there any
legal quandary with this?  We have POA, but it just seems scary that someone
could say you have mental issues and no matter how you object, you're stuck
staying where they put you!  She truly has no option even if she sounds
reasonable to others?

> If there are a couple of sisters that can help with this, then good.
> Maybe two of you can take her for her "tests".    We told my mother in law
[quoted text clipped - 17 lines]
> kept asking to go home.   On some level she knew she wasn't healthy and
> accepted that she was there because of that.
Evelyn Ruut - 10 Jun 2007 22:12 GMT
>> Hi Mary,
>>
[quoted text clipped - 12 lines]
> you're stuck staying where they put you!  She truly has no option even if
> she sounds reasonable to others?

I am assuming you have a diagnosis in place?  That is pretty crucial.
Proper testing and all of that may make the difference.  It isn't like
simply grabbing someone and trying to "put them away."   You need to have
your doctor on board too.   Have you spoken to an elder law attorney?
These are all part of the groundwork.  Once things are all in place, then
you can make your move.

By the way, almost all alzheimer sufferers sound perfectly logical at times,
especially in the beginning.  My mother in law certainly did.  But a scan
revealed brain changes, and a psychiatric test revealed cognitive deficits.
Perhaps I assumed you had done all this legwork beforehand....?   Sorry... I
should have asked first.

Signature

Best Regards,

Evelyn

MEH - 11 Jun 2007 13:54 GMT
>>> Hi Mary,
>>>
[quoted text clipped - 25 lines]
> deficits. Perhaps I assumed you had done all this legwork beforehand....?
> Sorry... I should have asked first.

Oh, yes - she's fully diagnosed, etc.  My imagination always runs at full
speed with the 'what ifs' in all situations!

Thanks :)
Dennis P. Harris - 11 Jun 2007 06:26 GMT
> I absolutely agree about saying it's something else, but isn't there any
> legal quandary with this?  We have POA, but it just seems scary that someone
> could say you have mental issues and no matter how you object, you're stuck
> staying where they put you!  She truly has no option even if she sounds
> reasonable to others?

sounding reasonable and actually being able to reason are two
different things.  people can be quite impaired and sound
reasonable, especially if they rarely say anything meaningful and
there isn't much to distract them.

didn't you say she had been diagnosed with ALZ?  yes, if she
really objects, in most states she is entitled to a competency
hearing.  the judge would either consider medical evidence
offered by the DOA, or require a medical exam & opinion.

most of the time, the results of tests like the MMRI would be
enough to convince a judge if they show significant impairment.
Mary_Gordon@tvo.org - 10 Jun 2007 16:52 GMT
Hi Mary,

The single biggest hurdle in this whole thing is the shift you need to
make - from viewing your mother as a competent adult who needs to be
consulted, who can understand her own situation, hear out the options
and make appropriate choices. We've all been in your shoes, and its a
HUGE shift to make - especially if your mother has always been an
authority figure, and very independent.

I know you haven't crossed the river on this one yet, since you are
tied up in knots about her reaction. If for example, this was your
child, as the responsible caregiver, you'd decide what the best thing
to do was, and go for it, knowing the kid might object to whatever
change was necessary, but would get over it. You wouldn't feel the
need to explain anything in painful detail or get the kid's agreement,
much less "permission" (i.e. for example, if the child needed to be
enrolled in a daycare, or you needed to move house etc.).

At our house, we sometimes used the good cop/bad cop thing. Since I
was the daughter in law and less emotionally tied up with her
reactions, I was the one who made the arrangements and told her what
was going to happen (at least, at the point where there was still some
point to tell her anything, which was only in the very early days). My
husband (her only child), was the one who patted her hand and agreed
with her that the world was rotten and unfair. We did have powers of
attorney. We also knew that my mother in law might object to certain
things but that she couldn't hold thoughts long enough to organize any
kind of actual resistance or "escape".

When its time, you get your mother out of the way by sending her to
visit a relative overnight or for a few days for a nice visit. Then
you run around like ants and move whatever you need to move to the
facility in terms of personal items or furniture, so there is no
packing, bustle or confusion anywhere near her. Then, you bring her
back to the facility with her things already there, eat lunch with
her, and turn her over to the staff so they can distract her - and go
home. Do not feel you have to get through to her that this is where
she is going to live now.  Do not make a big deal about the situation,
no matter how upset you are. Be matter of fact and calm. Do not engage
in arguments with her - she will get wound up, and long after she's
forgotten what she was upset about, the fury will linger. Most people
will want to arrange with a doctor ahead of time for a scrip for
something to settle her down if she really gets out of hand with
anxiety (i.e. for short term use only). Some places suggest that you
not visit too much the first while, but you will have to go with your
gut on this one. If you can't visit without getting yourself and her
upset, you might want to limit visits until she's settled in.

M
Mary
MEH - 10 Jun 2007 21:41 GMT
> Hi Mary,
>
[quoted text clipped - 4 lines]
> HUGE shift to make - especially if your mother has always been an
> authority figure, and very independent.

All of your replies are very kind but my mother is a bit different - she
never held an outside job, has no friends and we have never expected her to
make any decisions on her own because she never learned anything about
living life. Our dad did everything and she didn't even know how to write a
check or drive a car until he died in 2000.  I would never have titled her
as, "a competent adult". Which is a horrible waste of a life, but these are
the facts and I'm sad for her. So that is not my biggest hurdle at all.

> I know you haven't crossed the river on this one yet, since you are
> tied up in knots about her reaction. If for example, this was your
[quoted text clipped - 18 lines]
> When its time, you get your mother out of the way by sending her to
> visit a relative overnight or for a few days for a nice visit.

Once again, in our case, she would *never* go somewhere overnight and she
has no relatives she would stay with. It's tough - she's home or driving her
car and that's it. She also has a little dog that she loves dearly and
getting a home where they accept dogs was a big priority. He should be able
to keep her happier when first moving.

> Then you run around like ants and move whatever you need to move to the
> facility in terms of personal items or furniture, so there is no
[quoted text clipped - 12 lines]
> gut on this one. If you can't visit without getting yourself and her
> upset, you might want to limit visits until she's settled in.

I can just imagine the hurt and hate she'll eminate with when we visit after
placing her. Hopefully, it won't be as bad as I'm certain it will be!!

Thanks for your help. The 'be matter of fact and calm' is what I'll focus
on...

> M
> Mary
Dennis P. Harris - 11 Jun 2007 06:17 GMT
> I can just imagine the hurt and hate she'll eminate with when we visit after
> placing her. Hopefully, it won't be as bad as I'm certain it will be!!

you have to remember, and keep repeating to yourself, over and
over "it's not her, it's the damned disease!".

the other thing to remember is YOU ARE NOT ALLOWED TO FEEL
GUILTY.  you are doing what you need to do to keep her safe and
away from harm, and there is NO reason to feel guilty.
MEH - 11 Jun 2007 13:54 GMT
>> I can just imagine the hurt and hate she'll eminate with when we visit
>> after
[quoted text clipped - 6 lines]
> GUILTY.  you are doing what you need to do to keep her safe and
> away from harm, and there is NO reason to feel guilty.

Not so much guilt as empathy - can't help it!
Evelyn Ruut - 11 Jun 2007 19:55 GMT
>>> I can just imagine the hurt and hate she'll eminate with when we visit
>>> after
[quoted text clipped - 8 lines]
>
> Not so much guilt as empathy - can't help it!

Empathy is fine, as long as you are exercising it in a way that is genuinely
helpful to her, and you will need to re-examine everything as you go, in
order to determine if it is really in her best interest.  I know we did.

For instance, some people will offer them choices, thinking that they
themself would want a choice offered, without fully connecting with the
concept that making choices may be well beyond her ability to cope.
Offering a choice to someone who has this kind of an illness can put them in
a quandary that emphasizes their deficits and actually makes them feel
worse!   My mother in law agonized over a menu in a restaurant.   Soon we
got the message and ordered for her.

As another instance, we kept my mother in laws house for several years,
paying the bills on the place as though some miracle would allow her to ever
go home.   It was a waste of money.   We should have resolved the business
of her home a lot sooner.

We also kept her at home with us a lot longer than we should have.   I think
she would have benefitted more had we admitted her sooner.

But all of that is moot now, and I hope you can relate to the concept I am
passing on.....

Signature

Best Regards,

Evelyn

Beth Cole - 14 Jun 2007 16:47 GMT
> I can just imagine the hurt and hate she'll eminate with when we visit after
> placing her. Hopefully, it won't be as bad as I'm certain it will be!!

Depending on how long you wait and the stage she's in, it might be two
or three days and she'll have forgotten the upset.

When we put my MIL in the nursing home in November, 2001 (her body is
still there, bed-ridden and only semi-conscious, thanks to this damn
disease), there was no getting her out of the house first, due to her
poor physical condition.  My FIL & husband kept her occupied while I
packed the minimal necessity for her first night, such as a nightgown,
her toiletries, her pillow and a change of clothes, and then we took
her.  She was an emergency placement in the view of the State Department
of Aging, because she wasn't safe to be in her home.  We didn't talk
about where we were going, other than to say that she was going to enjoy
it (it was less than a 5-minute drive).

That was Tuesday.  When we returned on Saturday, she was smiling and
happy for the first time in months.  The medication adjustments that
they did made a world of difference in her.

Beth

Signature

Don't go around saying the world owes you a living. The world owes you
nothing. It was here first. ~Mark Twain

Dennis P. Harris - 14 Jun 2007 22:11 GMT
> That was Tuesday.  When we returned on Saturday, she was smiling and
> happy for the first time in months.  The medication adjustments that
> they did made a world of difference in her.

most important, she was no longer administering her own meds.
Beth Cole - 14 Jun 2007 22:28 GMT
>> That was Tuesday.  When we returned on Saturday, she was smiling and
>> happy for the first time in months.  The medication adjustments that
>> they did made a world of difference in her.
>>
> most important, she was no longer administering her own meds.

She wasn't before.  My FIL was responsible for them (he had been for 6
years, because of eye problems that left her unable to read prescription
bottles).  The difference was having professional care and observation
that led the physician to do dose adjustments and changes to the drugs
prescribed.  The doctor didn't trust lay people to observe behavior and
report it accurately, which is a whole other issue that I'm still
fighting him over.

Beth

Signature

Don't go around saying the world owes you a living. The world owes you
nothing. It was here first. ~Mark Twain

Dennis P. Harris - 15 Jun 2007 00:31 GMT
> The doctor didn't trust lay people to observe behavior and
> report it accurately, which is a whole other issue that I'm still
> fighting him over.

someone from our state ALZ agency (no longer affiliated with
national because they didn't provide any services for alaska but
wanted the alaska chapter to send them a portion of dues
collected) was on the radio last week.

her first suggestion for anyone noticing signs of dementia in a
loved one is to immediately start keeping a detailed journal to
show the doctor.  thorough documentation, with clear writing
giving a detailed description of events, is often persuasive,
especially if events are frequent.
 
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