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

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convincing my mother - help please

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linda_no_ spam_ email@comcast.net - 19 Jan 2006 00:55 GMT
My  brother, sister and I had to get my mother into a care unit at Xmas -
she has been diagnosed with Alzheimer's - all the symptoms are classic and
are mentioned in this group - she turned on the stove with an empty pan on
it, was not bathing, the house was dirty and she could not see it - she
drove (has not driven for almost a year) to the grocery store - got
groceries - got lost - the police brought her home - etc.

My hope is that some here will have suggestions for convincing her she can
no longer live at her home alone. She has been in the care unit for almost 3
weeks - they have assisted living apartments and we would love to get her to
move into one - but - so far - she is resisting even the care unit - will
not allow us to bring in any pictures or personal items - since she will be
'going home' in a day or two. She is getting alone well with the others and
the staff. Before she had isolated herself and faked us out pretty well -
now that she is better - the struggle to get her to accept that she cannot
go back to her house will be awful - it was bad enough getting her to go to
the care unit - she was not has well physically then as now and it took 3
days of 'tag teaming' her - my sister and I had to take turns (for hours)
with talking to her. We were exhausted.

She is going back to her doctor (she is on aricept as well as medication for
high blood pressure and cholesterol) early next week - we have spoken to him
and he will tell her she must have some sort of assisted living - she has
already been told this by another doctor but refuses to believe it or
remember it.

Have others here struggled with this - I have read a few posts where the
person moved willingly - there must be other who did not.
We just don't know what to say - we , have not told her she was not bathing
(we are still fighting this one as I think showering there means staying
there to her,) have not told her the house was dirty as that would depress
her - she does (sometimes remember the police picking her up and bringing
her home - they contacted my sister) - we have not told her she turned the
stove top on,h - etc.

We are hoping the doctor talking to her will help - but - she is really
stubborn  and is now well enough to emotionally and verbally fight us over
this.

I live in another state and am flying back next week for the doctor's
appointment and staying a few days - if we could just get her to let us move
her bed and some pictures it would be a huge step forward. She claims the
bed she is using there has 'bugs' - not true - the sheets are washed for
her - the facility is new, very clean and very well staffed. She also would
bring only a few items of clothing and reminds us to get the hangers along
with the clothes when she 'leaves to go home'
It is so hard - it just tears at your heart - if she were living alone she
would die before long due to an accident - taking her medications wrong etc.

Sorry to be so long with this - it is so hard and I hope someone there has
been through this resistance and can write about how it went for them.
Thanks - Linda
Beth Heimlich - 19 Jan 2006 03:08 GMT
Oh Linda,  This is so hard.  I'm sure you'll get varying answers to help
you figure out what will be best in your situation.  Having been thru
something similar, my advice is don't address it.  Accept that you are
not going to get her to agree she needs help.  The diseased brain cannot
comprehend the need.  To her, she's just fine.  We did the same thing
and were looking for some kind of sign that she approved of our efforts.
 It is not going to happen.  She is not going to say, "Oh you're right.
 Thank you for arranging this."
    Once you get in that mindset, then just act as if she has already
agreed or it was her idea.  She doesn't remember, right?  Don't argue,
but be more like a politician--give an answer not on topic, change the
subject, distract her, or just walk away.  Decide when things have to be
done and just do it.  If she's going to fuss about bringing things in,
have one of you distract her elsewhere while the deed is done.  She'll
fuss and fume; expect it and let her.  it will soon blow over.
Eventually, the resistance does fade and they forget.  Some have used
the excuse that the house is being painted or repaired and she can't go
"yet". Whatever, would make sense to her. Typically, their logic fails
to mount a defense.  Then be vague about time and circumstances("next
week" or after the doctor says you can).
    I know you want to involve her, give her choices, etc.  But it does not
work with dementia.  You're doing the right thing-we'll all tell you
that, but she won't.  Remember, the decision is made and is
non-negotiable.  You don't have to rub it in, but don't expect her
approval.  More like getting youngster off to pre-school.  It works in
the end-especially if she's in a place that offers stimulation. You
can't change your mom's thinking, but you can adjust yours.
    Best wishes.
            Beth in Maryland.

       
Gwen Love - 19 Jan 2006 04:54 GMT
Linda, let me say that Beth told you like it is.  You cannot consider what
she wants; you just do what is best for her and let her get over it when she
will.  You cannot reason with a person with AD.  Her reasoner is broken and
she is not capable of making rational decisions.  You can tell her
everything that is wrong and it won't make one bit of difference to her; her
mind won't accept that anything is wrong.  You just do what is best for her
and don't ask her opinion.  In fact, it is best not to tell her anything
about it; just do it.
Gwen

> Oh Linda,  This is so hard.  I'm sure you'll get varying answers to help
> you figure out what will be best in your situation.  Having been thru
[quoted text clipped - 25 lines]
> Best wishes.
> Beth in Maryland.
Evelyn Ruut - 19 Jan 2006 13:08 GMT
Linda, please let me add my endorsement to Beth and Gwen's comments.   You
will never convince your mother of anything, not even that day is day and
not night.   Her ability to reason and think things out for herself is
broken.   Reasoning things out for herself requires memory, and that is the
very thing that is afflicted.   Make your plans for her the best way you
can.   Even if you got her convinced at some point, it would only last a
moment before she forgot about it.

My mother in law was the same way, burning up the pots and not bathing and
all the same sort of things.   We were forced to resort to a kind of
trickery, to get her to come for a "visit" with us.   The visit never ended.
She imagined she was going to go back home all the time, but of course it
never happened.  She got moments where she seemed to understand, but they
were gone in 2 minutes.

Signature

Best Regards,

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

> Linda, let me say that Beth told you like it is.  You cannot consider what
> she wants; you just do what is best for her and let her get over it when
[quoted text clipped - 35 lines]
>> Best wishes.
>> Beth in Maryland.
linda_no_ spam_ email@comcast.net - 19 Jan 2006 16:24 GMT
Thanks to all of you - I have been searching and readomg articles all over
the web - with your adivice  and the other stories I have read I emailed my
sister and said we just need to go ahead and start moving thngs - she is not
going to agree and waiting for her to do so is just harder on all of us.
Thnaks Linda
> Linda, please let me add my endorsement to Beth and Gwen's comments.   You
> will never convince your mother of anything, not even that day is day and
[quoted text clipped - 50 lines]
>>> Best wishes.
>>> Beth in Maryland.
Tumbleweed - 19 Jan 2006 16:36 GMT
> Linda, please let me add my endorsement to Beth and Gwen's comments.   You
> will never convince your mother of anything, not even that day is day and
[quoted text clipped - 3 lines]
> you can.   Even if you got her convinced at some point, it would only last
> a moment before she forgot about it.

Wot they all said. Just do it, whatever it is needs doing, but if she is
happy in the care unit, getting on well with people, you might be best to
leave her there. Especially if she is convinced she will go back home in a
day or two and that is keeping her content. Play along with that.

Dont underestimate the difficulty in her acclimatising to an assisted living
unit, you might think it would be easy for her to, but chances are it wont
be, so unless there are financial reasons or similar you need to move her,
why bother? It might even be *much* worse, suppose she takes it upon herself
to go back home, because I'm presuming she would prefer to be there from
what you say? How would you prevent her going?

If she *needs* to be moved, then move her. tell her she is going for a
doctors visit or any other lie that will work. But dont expect her to want
to move her stuff into that place either, why should she, she'll be going
home in a couple of days wont she?

In fact, anytime you feel like convincing her of something, face the nearest
wall and chat to it for 2 minutes. There, that was as useful, but didnt get
your mother agitated. Now just go and do whatever needs to be done but
without the useless and emotionally exhausting arguments. Arguments which,
as Evelyn said, even if you won through some particularily persuasive words,
she'd forget 1 minute later and be back to she she was, which is in her own
reality where neither you nor anyone else can penetrate.

Signature

Tumbleweed

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Ruth - 20 Jan 2006 03:09 GMT
The answers to your question have been right on the money.  Life with AD is
not a democracy.
I would add that your loved one will probably remember the tone of your
voice more than the words.  Keep your end of the conversation upbeat and
cheerful - the words don't have to be the whole truth or even on topic.
Ruth
Steve - 20 Jan 2006 08:42 GMT
Dear all
Can I just say to all of you who are talking about memory issues, don't
assume that all AD patients lose their memory straight away.My mother is in
the end stages and her memory is the last part of her brain to shut down.
She still has it even though she's in palliative care.
Throughout her illness her memory has remained intact. Her confidence in
doing basic things was the first thing to go, followed by her speech, then
her fine motor control, then her ability to use a knife and fork (though she
can still use a spoon) and then her ability to wash, bathe and toilet
herself.
The whole presentation led us to seek a second opinion recently because her
symptoms just did not add up. Her consultant gave me some articles on
atypical presentations of AD. He was in no doubt about the diagnosis.
Please don't make a sweeping statement that all AD patients lose their
memory and should not be consulted on anything involving their care. It's
very disempowering. Fair enough if the illness follows a classical course.
This is a terrible illness that takes on different courses and all our
experiences  and loved ones are unique and should be treated as such.
Sorry for the rant
Cheers
> The answers to your question have been right on the money.  Life with AD
> is not a democracy.
> I would add that your loved one will probably remember the tone of your
> voice more than the words.  Keep your end of the conversation upbeat and
> cheerful - the words don't have to be the whole truth or even on topic.
> Ruth
Anthony Shipley - 20 Jan 2006 09:30 GMT
>Sorry for the rant

Not al all! Thank you for your careful and dignified comment.

anthony shipley

Run away with me; I can make you unhappy.
Tumbleweed - 20 Jan 2006 17:45 GMT
> Dear all
> Can I just say to all of you who are talking about memory issues, don't
> assume that all AD patients lose their memory straight away.My mother is
> in the end stages and her memory is the last part of her brain to shut
> down. She still has it even though she's in palliative care. <snip>

Steve,
AFAIK the only *conclusive* test for Az is on a post-mortem, before that,
its usually diagnosed because everything else has been ruled out, and
usually Az does involved memory losses (have never before heard of it not
involving memory loss), indeed thats one of the defining sympoms. So it may
be that your mother doesnt have Az.

When you say your mother still has her memory, didn't you also say that she
didnt know who you were, in your very first message here? If thats right,
the two statements dont go together do they? Do you mean she can still
remember things from a long time ago but not recent things? (where recent
might= within the last 50 years!) That is of course classic Alzheimers.

I'd also say that IME however straight you are with a patient with Az they
often wont accept that things are bad, in fact they nearly always won't, and
certainly this group is full of such history.

Signature

Tumbleweed

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

Adelle - 20 Jan 2006 18:20 GMT
> Dear all
> Can I just say to all of you who are talking about memory issues, don't
[quoted text clipped - 6 lines]
> she can still use a spoon) and then her ability to wash, bathe and toilet
> herself.

Steve,

This sounds like my FIL, who had an unspecified dementia (possibly vascular
dementia) which affected the frontal lobes first (unlike AD which starts in
the rear of the brain). This was seen very clearly on a PET scan. Even when
his delusions meant he needed 24 hour supervision in a nursing home, my FIL
could still handle routine things. Interestingly, for a while, he wouldn't
shower/shave, but then started doing so again after a change in
depression/antipsychotic meds.

Ultimately, whether its AD or another dementia, the treatments and final
ends are the same, sadly. The only real difference is for the survivors as a
few of these dementia's are more strongly inherited than others. But the
only way to be sure is through an autopsy.

The frontal lobes govern executive function like how to perform a process
and speech/oral motor skills. May I suggest you google Frontal Lobe Dementia
and see if it makes sense regarding your mom. While her doctor may be
convinced its AD, you never know what criteria the specialists who wrote the
articles have used to create their designations (leading the docs down the
garden path). Perhaps they are lumping all unspecified dementias into
'atypical AD.'

Adelle

> The whole presentation led us to seek a second opinion recently because
> her symptoms just did not add up. Her consultant gave me some articles on
[quoted text clipped - 12 lines]
>> cheerful - the words don't have to be the whole truth or even on topic.
>> Ruth
Mary_Gordon@tvo.org - 19 Jan 2006 21:06 GMT
Oh my goodness, Linda.

Trying to convince someone in mid AD that they have a problem is like
trying to convince a two year old they shouldn't run in the middle of
the street, yank the tail of the Rotweiler, or play with the carving
knives.

Your mother's damaged brain means she has no insight into her own
situation or problems. She can't see what is obvious to everyone else.
Add to that that she can't remember anything for longer than a few
minutes - never mind that the idea of being incompetent and dependent
is so emotionally threatening. Save your breath, she will never, ever
agree with you no matter how rationally or convincingly you argue, no
matter what evidence you present, no matter who tells her. I
mean...seriously. Do you foresee the day when she's going to turn to
you and say "Yes dear, I see your point. You are right, I need help and
can't live alone. I've been blind and unreasonable. Lets plan my move
together."

Like...that's going to happen....NOT!

You have to get to the point where you recognize that you will never,
ever get her permission, agreement, endorsement, enthusiasm,
cooperation etc.. - and you know what? You don't NEED it to do what you
need to do, which is to take steps to keep her safe.

You know it is not viable or safe for her to live alone. If you have
powers of attorney for her, just go do what you have to do. Go get her
stuff, put it in her room, hang the pictures, put the clothes in her
closet. End of argument.
If its too upsetting for her to see you doing it, get a family member
to distract her, take her out to lunch or for a visit, and take care of
it while she's gone.

After that, just don't get into arguments with her. Use her memory
issues to advantage. Act as though its not a matter of discussion -
like its all settled. If she insists on an explanation, pretend to
"remind" her that her place is being painted, fumigated, repaired. Or
act surprised that she's even asking the question as though this was
agreed to by her some time back and she's just forgotten. Change the
subject, distract, divert, move on.

I'm willing to bet money she can't organize an escape (i.e. a competent
adult could arrange to pack their things, get a cab and take themselves
home). Given that she's not capable of going anywhere without help,
you'll just have to learn to tune out the whining.

Keep in mind that many people in mid to later AD will ask to go home
all the time irrespective of where they are, including in their own
homes. When my mother in law got onto the subject she meant her
girlhood home, sold out of the family more than 40 years earlier - try
and tune someone with AD into THAT reality. She'd forgotten she was
ever married. Oy. We couldn't have taken her back to her parent's home
even if we'd really, really wanted to unless someone gave us a time
machine.

Mary G.
Steve - 20 Jan 2006 08:46 GMT
Another thing and i'll shut up....my mam's mother, aunty, uncle and
grandfather all died from AD (a bit worrying for me!). My mam knows she has
the same illness as they did and she knows what is happening to her now. We
had to assertivley turn down the offer of a placement in the home where gran
died. That would have been very cruel. Thank god she's in an NHS ward
staffed by qualified nurses.
I'm finnished....for now!
> Oh my goodness, Linda.
>
[quoted text clipped - 53 lines]
>
> Mary G.
Tumbleweed - 20 Jan 2006 17:49 GMT
> Another thing and i'll shut up....my mam's mother, aunty, uncle and
> grandfather all died from AD (a bit worrying for me!). My mam knows she
> has the same illness as they did and she knows what is happening to her
> now. We had to assertivley turn down the offer of a placement in the home
> where gran died. That would have been very cruel.

For who? Could she remember that? FWIW again, very few Az patients seem to
know they have Az, if only because they forget, so your mother seems quite
atypical to me.

> Thank god she's in an NHS ward staffed by qualified nurses.
> I'm finnished....for now!

No need to shut up :-)

As a ray of hope, did you know that 50% of people over 85 have Az? So if you
had more relatives who died aged around that age or more, and didnt have AZ,
then either you are in the normal range, or it might be a statistical blip.
From what I have read, its only EOAD that *can* be genetically caused. Can
you remind me how old your mother is?

Signature

Tumbleweed

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

Steve - 20 Jan 2006 21:43 GMT
She's currently 63 and has had the diease since about 55 years. Her memory
is stil intact and she knows she has the same illness has her mother and her
mother's brotther and sister. And her grandfather. I think it would have
been cruel to send her somewhere where she knows and is aware that her
mother died there.
It wouldn't be very nice to visit his wife every day in the same place where
they both visited my gran. I know he has to face the fact that she is dying
and it will be sooner rather than later but I don't think he wants it to
smack him in the face

>> Another thing and i'll shut up....my mam's mother, aunty, uncle and
>> grandfather all died from AD (a bit worrying for me!). My mam knows she
[quoted text clipped - 16 lines]
> statistical blip. From what I have read, its only EOAD that *can* be
> genetically caused. Can you remind me how old your mother is?
Evelyn Ruut - 21 Jan 2006 00:50 GMT
> She's currently 63 and has had the diease since about 55 years. Her memory
> is stil intact and she knows she has the same illness has her mother and
[quoted text clipped - 5 lines]
> is dying and it will be sooner rather than later but I don't think he
> wants it to smack him in the face

Steve, please think about this..... and please get scientific in your
approach.  This is no time for emotion to rule, you need to think like a
scientist.    Enjoy her while you can, because this damned illness has a
nasty way of creeping up unawares.    You need to be the one who can hold up
everyone else, even if they are crying..... and even if YOU are crying.

You need to get your medical diagnostics in place first of all.  Then you
need to get the legal stuff in place.   Then you need to do whatever else
needs to be done about care, placement, disposal of belongings, and
then......do your own crying in private.

If she goes to a place where her other loved ones have gone before her, and
she knows... and she knows it is a good place, where she will be cared for
well, and it is close to home and people who love her can come to visit.....
she will find a way to adjust to it.

Alzheimers is not any special place, it is a state of mind.   Make your
decisions based on ultimates, not on intermediary situations.    Trust me,
even if she knows the place from previous experience, there may be some
comfort in the familiarity that you may not be giving credence to.

A person with alzheimers loses all sense of familiarity.   They long for the
past where they felt they knew what was going on, and the people they knew
then.   Don't look at this negatively, even the smallest familiarity might
possibly be a comfort.   You need to see it through her eyes.

I thought about my answer very carefully.  If I were diagnosed, would I like
to be somewhere else ....  or in the same place I put my poor mother
inlaw......(knowing it was where she died of alzheimers) which was near
enough for loved ones to visit?

I can tell you that I would rather be in the same place.   If I were farther
away from my loved ones, they might visit less often.

It is what it is...

I know your decisions are painful ones, and that they are difficult.   Apply
the rule I just did... think if it were you.

Signature

Best Regards,

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

>>> Another thing and i'll shut up....my mam's mother, aunty, uncle and
>>> grandfather all died from AD (a bit worrying for me!). My mam knows she
[quoted text clipped - 16 lines]
>> statistical blip. From what I have read, its only EOAD that *can* be
>> genetically caused. Can you remind me how old your mother is?
Steve - 21 Jan 2006 05:55 GMT
It was a social services dump that smelt heavily of urine. Why these places
insist on carpets  i don't know. I banned them in my unit!
She's in an nhs ward where there are only 6 patients. The staff patient
ratio is high and i'd rather she be cared for my trained rather than
untrained staff. She was in a ss place recently and experienced an acute
dystonic reaction to he Amisulpiride. They didn't know the symptoms and kept
pumping the drug ino her.They were kind and caring but didn't know what they
were doing.

>> She's currently 63 and has had the diease since about 55 years. Her
>> memory is stil intact and she knows she has the same illness has her
[quoted text clipped - 65 lines]
>>> statistical blip. From what I have read, its only EOAD that *can* be
>>> genetically caused. Can you remind me how old your mother is?
Evelyn Ruut - 21 Jan 2006 12:03 GMT
> It was a social services dump that smelt heavily of urine. Why these
> places insist on carpets  i don't know. I banned them in my unit!
[quoted text clipped - 4 lines]
> kept pumping the drug ino her.They were kind and caring but didn't know
> what they were doing.

Only you know the particulars and where she would be best.
Like I said, ask yourself if it were you, ..where would you rather be if you
had to go in one yourself?

About the carpets, I think they have them to prevent slipping and to
possibly cushion a fall.
Signature


Best Regards,

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

A R Pickett - 20 Jan 2006 00:25 GMT
Linda wrote in part - > My hope is that some here will have suggestions for
convincing her she can
> no longer live at her home alone.

Hi Linda -

What everyone else said.  My father has "vascular dementia" not similar to
AD in many respects, but quite similar in many others.  He was completely
unable to see the impossible nature of his situation, and his children one
weekend just showed up.  We rented a truck, packed his furniture and moved
him.  He had purchased an apartment in a senior citizens complex and (and
after several months had elapsed) had done NOTHING more about moving.  He
was unable to drive, completely dependent on whoever happened to drop by for
groceries, medications, and social stimulation and interaction.  He still
rather bitterly says that "this wasn't my idea" although he is thriving
where he is.

Because we love him and because we all came to see that on his own he would
do nothing, we took the initiative.  I am absolutely sure we did the right
thing, and as hard as it is, I do not expect him ever to give me or my
siblings any credit at all for helping him when he needed it.  I wish
fervently that the future would hold such a thank you, but realistically, I
know we will never hear it.

Hang in there, and stick around.  This group is immensely helpful.

Signature

A R Pickett aka Woodstock

"Sometimes the facts threaten the truth"
Amos Oz, prize winning Israeli author

Read my book reviews at:
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Remove lower case "e" to respond

Steve - 20 Jan 2006 08:28 GMT
Hi Linda
Sometimes it's hard to get people to understand or accept they are ill. I
think deep down they know but are frightened about what's happening to them
now and what will happen in the future.
If your mam is determined to go home you might need to plan with the medical
team what you want to happen.
If you're in England, you might have to have your mam detained under the
mental health act if she would be a risk to herself through her
vulnerability to accidents either in the home or outside.
In my experience when you're straight up with the person who isn't well they
will accept tthe approach you have to take. It's like your taking control of
a situation they can't.
My mam has had AD for about six years now. Her first symptoms were that of
depression and no one would do anything about it. When I came home from
London to take her to GP he refused to comply with my request to refer mam
to community mental health services. Instead he prescribed HRT.
It was only when my dad got sick of my nagging he insisted on my suggestion
because he later told me he thought I'd never forgive him if anything
happened to mam. Not true of course because i love them both dearly.
Mam was refusing all ideas of mh problems and treatment at first. The rest
is historyand she's approaching the end stages. You have to stay strong and
focussed and be prepared to take some tough decisions along the way. However
angry, hurt or upset she might be at first., keep in your mind she's not
well and anything you do is becuase you love her.
Good luck
Steve
> My  brother, sister and I had to get my mother into a care unit at Xmas -
> she has been diagnosed with Alzheimer's - all the symptoms are classic and
[quoted text clipped - 50 lines]
> been through this resistance and can write about how it went for them.
> Thanks - Linda
Beth Heimlich - 20 Jan 2006 13:31 GMT
>>In my experience when you're straight up with the person who isn't
well they
will accept the approach you have to take. It's like your taking control of
a situation they can't.<>

Steve, You're right. You can't generalize because AD affects each LO
uniquely.  It boils down to where the damage is and what is working.
There are typical patterns of involvement just as in damage after a
stroke.  With my MIL we had a narrow "window of opportunity" to get her
acquiescence and yes, I think she knew deep down-but could forget it all
just as easily.  However, at the time we needed to place her (later) she
was frankly receptive aphasic  meaning our words and explanations made
no sense to her.  Thus she was beyond reasoning with.  Pressing on in
treating her like we wanted to caused increased anxiety and agitation
because it made her feel she should "know" what she obviously didn't.
In her case, we pretty much have to avoid much conversation beyond some
basic social responses.  We've  learned to respond to her tone
conversationally, but take our cues from her and pretty much don't
question her on anything-because there is panic to no response.  And
unfortunately, she's right in the middle of the spectrum of the 50 or so
folks in her assisted living.  You do what you have to do with what you
have to do it with and try and not look back too much--because it hurts
to realize how much is gone.

Beth
linda_no_ spam_ email@comcast.net - 21 Jan 2006 02:03 GMT
> >>In my experience when you're straight up with the person who isn't
> well they
[quoted text clipped - 22 lines]
>
> Beth

Steve - you are right in pointing out that I was not clear with what I
wrote - her long term memory is good to excellent (depends on the subject I
think) her short term memory is almost completely gone. They did an MRI to
rule out (most?) other causes and it was normal - although their are signs
of a previous stroke - a small one they indicated - no swelling or tumors
etc to be seen.
All the classic symptoms of Az are there - straight out of the text books -
in the order in which they list them - they are also what I read on the news
groups. By reading the 7 stages I would say she is between stages 5 and 6. I
do wish that she had not been so good at hiding what was happening - perhaps
we could have gotten her help sooner - I read the disease cannot be cured
(wouldn't that be nice) but with some patients can be at least slowed. I
fear that as far along as it has progressed even this may not be possible.
She was able to hide it well until this fall- then I felt that something was
wrong - since I live out of state she was able to "keep it together" for a
period of time over the phone when I called until then and my sister did not
notice the deterioration until then because she would see her often enough
that she did not notice the slow changes - kind of like when you see the
niece or nephew after 5 years and say - gosh you have gotten tall - where to
the parents that are there all of the time it is not obvious.
We have decided that when I am back there next weekend we will just have to
start to move some personal items - she will never agree to it - and she
will never be well enough to live alone again. It will be really hard for
all of us. The choice is to do this and have her with us - sort of - depends
on the progression - for a few years or have her die alone because she will
get the medications wrong - will get very sick very fast and will have some
sort of accident or fall that will cause her death - great choice huh? We
all have families and none of us has the ability to move in with her - how
about her moving in with us? Maybe before - although she said she would not
move in with me as that would mean moving out of state away from my brother
and sister and the grand children - my sister has 2 children. But now you
cannot trust mom not to decide to turn on the stove in the middle of the
night - she did it while I was staying with her as well as getting up all
night - what amazed me was that it was every hour on the hour - with in a
minute or so - 11:30 - 12:32 - 1:30 - 2:30 sleep then until 5:31 and then
every hour after that - after 3 nights of that I was a wreak. I would stay
up until about 1 AM cleaning - I put dishes in the sink and when she got up
and asked what I was doing - I would say I was washing the dinner dishes -
and hour later same question same answer - she never noticed and had no
concept of time at all  - nor did she always notice I was still up - into
the bathroom for her and back to bed - one hour later the same thing. And
she had no idea of how dirty the counters were and the floors and the
bathrooms - my mother the queen of clean - so depressing to see. Laundry not
done - not even much to do - I think she had not washed anything in a long
time - chemical cleaners mixed in with the food in the cabinets - that one
was scary - she had the vegetable cooking oil under the sink with the Drano.
Things in the most unlikely places - and papers - years worth of magazines
and papers - (this is another thing that tells me this is not extremely
sudden) - a 4 year old magazine over a recent telephone bill on top of tax
returns from two years age mixed in with Xmas cards and every other type of
paper - there was no 'date' history or organization to it - old with new
financial with readers digest. In every drawer and closet also, bedrooms,
kitchen, living room - my sister and I went quickly through it and that took
hours - after she went home - when I thought it was done - I opened the
large laundry basket in the guest room - full to the top - recent bills -
old papers. So sad. We were careful to leave some sorted stuff out so that
it would not be immediately obvious that we had gone through stuff. Now I
think it was a precaution we took in vain - although I would do the same
again. I don't think it would be a good idea for her ever to go back even
for a short visit of an hour or so - it would be awful to try to get her
back to the care facility after that.
Force someone you love to do something they hate or let them go and hurt
themselves. She does sometimes seem pretty content in the care unit (my
sister emails each day) and of course wants to go home - and at times (as
others have written that home is one she lived in over a decade ago.)
There is my litany of the pain of Az.
I do have a question - my brother and sister both have POA's - and she has a
will with an attorney in which my brother is executor. From what I am
reading mom - in a few years - I can pray for more then that - she is 82 and
has apparently had this for several years - will become unable to speak -
are there other legal papers we need to think about?
They will not let her just walk away from the care facility but she is
pretty stubborn - they would call us - but what could we do if she insisted
on leaving? This is possible when we begin to move personal items - she
tends to forget pretty fast - but this might be a big enough jolt that she
could remember where she is for several hours - has this happened to others
when moving stuff? She is going to see the doctor next week - and he will
tell her she needs to be in an assisted living situation - I expect that
because she will not like to hear it she will ignore it. Would a letter from
the doctor be a wise thing to get?
What an awful disease - and yes there was plenty of talk of killing
herself - we found 4 sets of car keys and the loaded gun and removed them.
She did point out that she has an electric stove so that would not work to
stick her head in - wanted one of us to push her in front of a moving car -
we declined.
So much pain for her - she knows something is wrong but cannot remember or
be sure of what it is. It just tears at her and at us.
Thanks for listening (reading)
Linda

-
Gwen Love - 21 Jan 2006 03:12 GMT
Linda, does anyone have as POA for health care, or a living will explaining
what she wants in the way of care
should she not be able to tell anyone?
Gwen

>> >>In my experience when you're straight up with the person who isn't
>> well they
[quoted text clipped - 116 lines]
>
> -
linda_no_ spam_ email@comcast.net - 21 Jan 2006 03:17 GMT
Answer at the bottom - thanks Gwen
> Linda, does anyone have as POA for health care, or a living will
> explaining what she wants in the way of care
[quoted text clipped - 121 lines]
>>
>> -

Yes Gwen - she wrote a living will 12 years ago after my father died of a
sudden heart attack
Linda
Steve - 21 Jan 2006 05:46 GMT
I take it most people are from America on this group so I don't know what
your system is like.
In England we'd have the individual's capacity to consent to treatment
assessed. Most of our loved ones wouldn't pass any capacity.
My father, sister and I have a thing called Enduring Power of Attorney. My
dad has control of their financial affairs. If, God forbid, anything happens
to dad then Maria and I both have control mam's estate. We both have to
agree jointly any decisions in order that one of us doesn't rip my mum off.
Not that we would we don't want or need their money. But there are some
people out there not so honest.
Anyway, if a person does not have capacity to consent and then refuses to
stay in a hospital then that can be detained against their will under the
mental health act. The place has to be licensed to take detained patients.
You might have something in a similar vein in America.
Good luck with moving the stuff
Best wishes
Steve
> Answer at the bottom - thanks Gwen
>> Linda, does anyone have as POA for health care, or a living will
[quoted text clipped - 128 lines]
> sudden heart attack
> Linda
 
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