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

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Help with elder in need of care but starting to refuse care ?

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Peter - 14 Apr 2006 14:51 GMT
What are the steps that one could take to deal with the need for some
kind of determination that an elder should have some kind of
intervention ?

If the person I am caring for all of a sudden does not want anyone
with her, at all, what does one do ? It is clear that she needs
someone, and could be in danger to herself. What if she just refuses
to have anyone near her, but will have trouble that way ?

She is coming up with imaginary and threatening statements of what
took place, but which has not taken place.

It could get dangerous for me if she calls the police and tells them
something not true.

I don't know where to start to approach this. I have been handling it
so far with love and care and my personal attention for a long time,
but she has changed fairly dramatically recently, for the worse.  

I have been taking care of her for quite a while and those who know
her see how much she had improved since I had started more or less
full time, a while back.

But now she seems to be coming up with untrue rememberings and if she
will not let anyone in her house -  I am concerned all around.

Whatever I eventually do, she will probably see it as a bad thing on
my part and say bad things to whomever.

But basically I just want to know who to talk to and how to start
dealing with this. The police ? A social worker ? I know I can walk
into a police station, but beyond that I don't know where to go or
what to do. She does not have any family remaining. I don't know if a
person can just be allowed to live alone if they are not in good
shape. Or if they should be required to go to someplace where there is
a staff to look over them.

Peter
notspam-sec4251@yahoo.com (remove the "notspam-")
Barb Terry - 14 Apr 2006 15:39 GMT
Peter,
  My mom one time told the man who delivered her oxygen,that we were
keeping her hostage and to please call the cops when he left.And yes i
was a bit concerned whether or not he would.But on the other hand i
think he could see she had alz.And no,the cops were not called.Good luck
to you.But in situations like that i believe your pretty safe.Barb
Mary_Gordon@tvo.org - 14 Apr 2006 19:55 GMT
I would start with her doctor - its clear there is something happening
cognitively - what you are looking at is entirely consistent with a
progressive dementia. She needs to be examined and diagnosed, if there
is any way possible to get her seen. Depending on the underlying cause
of her mental decline, there may be things that can be done to slow
down the progress, reduce her delusions, paranoia and agitation. Its
also very important that someone trusted have powers of attorney for
financial and medical decisions as it is likely she will not be
competent to sign legal documents much longer.

If that happens, you have to go to court to get guardianship and have
her declared incompetent - which is expensive and can be ugly and
upsetting.

She is going to get worse - if she's having delusions, your time to get
things set is short (i.e. she's already advancing in her cognitive
slip). I'd see about the doctor, and also consult a social worker ASAP.

Mary G.
Karen - 14 Apr 2006 23:47 GMT
My MIL would not accept any help and wouldn't tolerate anyone staying around
to help.  She made many wild accusations to people around her, family,
friends etc.  One of her docs (a psychiatrist) insisted that we put her
somewhere or he would and he helped us through the process.  We had to
collect letters from him and another doc that stated she was unable to live
alone.  Those letters were the basis for the legal docs (POAs, Living Trust,
etc) to become active and that gave us the legal authority to take her to an
Alz. facility with a locking door.

Yes, she pitched a fit.  Somehow she managed to call several people
including the police to report herself as abducted.  After regular
medication for about 3 weeks, she became much more rational, although she
was never able to admit she had been in need of help before.  And we
remained villians in her eyes for quite a while after.  If she had gotten on
Risperdal sooner, we might have been able to avoid the trauma of tricking
her into entering the locking area and leaving her there.  It was very
traumatic for her and us.

When my MIL was still living in her home town (before she advanced to the
point that we could move her near us) we carried a copy of the letters from
her various docs anytime we took her anywhere.  You may want to obtain a
similar letter from her doc stating her condition.  It would protect you
both because can you imagine if they were to separate the two of you and
release her, by herself, assuming that she was competent?  By the time you
had it straightened out, she could be lost.

Mary had an VERY important point -- you have to have contingency plans in
place (i.e. POAs) so she can be taken care of when she's no longer competent
to speak for herself.  Even if you plan to pay all the bills, you need a
Medical POA to be able to make medical decisions.  If these papers haven't
been done yet, you may need to get her on Risperdal or something like it to
stop the delusions so she will sign.

Hope this helps.

Karen

> What are the steps that one could take to deal with the need for some
> kind of determination that an elder should have some kind of
[quoted text clipped - 35 lines]
> Peter
> notspam-sec4251@yahoo.com (remove the "notspam-")
Peter - 16 Apr 2006 09:23 GMT
Mary and Karen, it does help.
However, one significant difference is that you seemed to have an
entire family on your side to support you. I am getting the impression
that unlike almost any other aspect of society, that there is really
no one who will step in and take over matters, or make some kind of
determination which can be enacted or enforced. It seems to fall upon
the individual who has been taking care of the person.

Nobody really likes to deal with a person who will not accept others
helping them and is not in good shape mentally.

I guess key is researching extensively and getting everything set up
in advance. And thus having one's ammunition dry and ready. That is
going to take some time and some doing.

In the meantime, it is a very, very tough go.

This is an incomplete communication. I post this while I think further
on what you contributed. Thanks, Peter

>My MIL would not accept any help and wouldn't tolerate anyone staying around
>to help.  She made many wild accusations to people around her, family,
[quoted text clipped - 72 lines]
>> Peter
>> notspam-sec4251@yahoo.com (remove the "notspam-")
Evelyn Ruut - 16 Apr 2006 11:59 GMT
> Mary and Karen, it does help.
> However, one significant difference is that you seemed to have an
[quoted text clipped - 15 lines]
> This is an incomplete communication. I post this while I think further
> on what you contributed. Thanks, Peter

Peter it is the most difficult position to be in.

My mother in law had no clue she couldn't take care of herself anymore, and
would not allow us to help her.   It was awful, because we were waiting for
a disaster to happen.   Her neighbors were sort of looking after her, but
she forgot how to walk the dog, how to shower and how to prepare herself
food.   She lost weight and neglected her teeth, her health, just
everything.

We had to resort to trickery of a sort, but once we were able to get her to
agree to come and "visit" us, we finally got it all sorted out and we just
never took her back home.   But the difference is that my husband is her son
and her only child, and she did finally get proper paperwork in place
allowing us to care for her.

For a non family member, it may just come to a place where she gets sick and
can't get up off the floor, or somehow comes to the attention of the
authorities in some manner.   Maybe she will go for a walk and get lost and
not be able to recall her address.   Maybe she will turn on the stove and
have a fire.   Maybe anything.   None of it good.

Like I said, it is the worst position to be in, because you want to help and
can't.   You can show up every day and pretend that she called you over and
hope that her forgetfulness will carry you through.   You can notify the
local police that this is a person who may be in need of some help.   But
most of all you may need to get some legal advice from the office of the
aging where you live, or from a lawyer (who will probably charge you for the
time out of your own money, not hers).

I wish you luck.  I know how awful it is, but there is not a lot you can do
when the person trusts no one and isn't aware of their own deficits.

Signature

Best Regards,

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

>>My MIL would not accept any help and wouldn't tolerate anyone staying
>>around
[quoted text clipped - 80 lines]
>>> Peter
>>> notspam-sec4251@yahoo.com (remove the "notspam-")
Alan Meyer - 17 Apr 2006 22:43 GMT
> Mary and Karen, it does help.
> However, one significant difference is that you seemed to have an
[quoted text clipped - 3 lines]
> determination which can be enacted or enforced. It seems to fall upon
> the individual who has been taking care of the person.

Unfortunately, I think that's right.  Most or all of the people you
might turn to for help will consider this to be yours and your
relative's problem, not theirs.  No one will be eager to take over
responsibility.

Fortunately, you do care and are taking responsibility.  So your
relative is in far better shape than those poor people with no
family or no one who cares.

I agree with others that you need to begin taking long term action
to get your relative into a better place.  The steps include:

Short term:

 Talk to her doctor to get his opinion, and to find out if
 anti-psychotic or anti-depressant drugs will help with her
 immediate problem of paranoia and rejection of help.  However
 even if you get such drugs prescribed, it may be difficult to
 get her to take them.

Longer term - but start right now:

 Get a power of attorney for health care and finances.  Any way
 you can get her signature on the forms is going to be worth
 doing and will lead to far less hassle than getting her
 declared incompetent.  You can find some good power of attorney
 forms on the net, or see a lawyer - who will charge you a bunch
 of money, but may be able to give useful legal advice.

 Get her declared incompetent if necessary.  If you get the
 right powers of attorney, you may not need to do that.

 Visit local Alzheimer's care establishments, getting prices,
 and forming your impressions of what are the best ones for your
 relative.

 Find out what financial help might be available through
 Medicare, Medicaid, or other sources.  Local social work
 agencies can help with this, but you often have to call three
 or four of them before you find somebody who is really
 knowledgeable and helpful (and who can likely give you advice
 on the other matters too.)

 Make a budget.

When the time is right.

 Arrange for her to be admitted to a facility.  They may require
 that one of their staff members visit with her first to
 evaluate her - which can often be arranged by saying something
 like "Mom, this is Mrs. Smith, she's a [nurse, friend, person
 who knows a lot of people who can help you, whatever works],
 etc.  The staff member will very likely be good at what she
 does and will set your relative at ease.

 Drive your relative to the home, stay with her for a bit while
 she gets involved in something, then slip out.

Doing all this will tear your heart out.  She will call you on
the phone and demand to know why you did this to her, what did
she ever do to you, why are you killing her?

I've been there and done that, cried, lost months of sleep, hated
myself and the world.

My only consolation was the clear, irrefutable evidence that all
of the alternatives were even worse.

Best of luck to you.

   Alan
Evelyn Ruut - 17 Apr 2006 23:12 GMT
>> Mary and Karen, it does help.
>> However, one significant difference is that you seemed to have an
[quoted text clipped - 75 lines]
>
>    Alan

Alan, this was an excellent and heartfelt post.  All true.
Signature


Best Regards,

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

AZdesertman - 21 Apr 2006 00:42 GMT
Peter,
As a caregiver to an 80 year old: I will give you my experience:
One day Patty was particularly irascible, she demand that I drive her over
to her mother's house in Des Moines, Iowa! No easy feat, as we reside in
Tucson, Arizona. The repetition continued all day. Finally, when I went to
the bathroom she escaped... she was in the arms of neighbor down the street.
Patty told the neighbor that I was holding her prisoner, and had beaten her
to prevent her leaving and all she wanted to do was to go to her Mother's. A
second neighbor joined in before I could arrive and they took Patty into the
neighbor's house and locked the door. I tried to explain the situation to
them, but they had already called 911. By the grace of God, the police
officer who responded had 30 years of police work under his belt, and his
mother also was diagnosed with Alzheimer's. He told me I was lucky a 21 year
old cop didn't get the call. Because, I would have been arrested for assault
and battery, and Elder abuse (a separate crime in Arizona) just based on
Patty's statements. He "interviewed" Patty in my presence and asked her what
had happened, she first said I punched her, he said, "I don't see any marks
or bruising Ma'am." She changed the story 4 more times, each time his reply
was the same. She then told the Officer that he was as big of an a.shole as
I was. At that point the Officer escorted her home. He then instructed me to
get a letter from her Doctor, which I did and the Doctor was very
cooperative. He stated , on his letterhead, that Patty was diagnosed with
Alzheimer's and Dementia and that she was delusional at times claiming to
having been physically abused, but that in fact she was in very good hands
with me and that all claims of abuse should be ignored. The officer
instructed me to have Patty's Daughter make a statement in writing that I
was Patty's caregiver and was in charge of Patty's day to day affairs and
seeing to her wellbeing and that the letter needed to be "Notarized." I have
these letters in my possession at all times. I am now indemnified, protected
and able to carry on my duties without fear of personal jeopardy.

Whatever else you decide to do, regarding treatments, settings, doctors: you
must first protect yourself!
Good Luck
 
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