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Medical Forum / Diseases and Disorders / Alzheimer's / October 2005

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LJ - 23 Oct 2005 13:03 GMT
I took all your advice to heart this last week. I sent out copies of a
letter outlining what has been going on to each doctor and the insurance
company. I contacted his work too. Everything was sent return receipt. I
discovered that his employer is a huge part of Cigna business. Friday I got
calls back from work's NY office. I am being given a "case worker" from
Cigna. They said it was rare but under the circumstances it was
"appropriate". I have both places for disability settled for now. The
overseer from his work spent time with me on the phone. She talked to me
about how to deal with him better. His not wanting to change clothes has
become an slight problem. Now I have to find a way to get the ct scan copied
for them. Next is the new Neuro on the 4th

I can't thank you all enough for helping me. I am not good at being forceful
and I am worn down enough that I wonder if I am being reasonable in my
demands. You helped me know that I had to push harder.
God Bless y'all

Linda Jean
Gwen Love - 23 Oct 2005 17:49 GMT
Linda Jean, may this be the first of everything getting better.  Good luck
to you.
Gwen

>I took all your advice to heart this last week. I sent out copies of a
> letter outlining what has been going on to each doctor and the insurance
[quoted text clipped - 17 lines]
>
> Linda Jean
LJ - 23 Oct 2005 22:04 GMT
thanks Gwen

LJ
> Linda Jean, may this be the first of everything getting better.  Good luck
> to you.
> Gwen
June - 23 Oct 2005 17:54 GMT
>I took all your advice to heart this last week. I sent out copies of a
> letter outlining what has been going on to each doctor and the insurance
[quoted text clipped - 17 lines]
>
> Linda Jean

Good for you!   I know from experience how exasperating insurance companies
can be.   I've helped my Daughter and son-in-law cut through red tape for
grandson who was born with birth defects.   Amazing what a computer
connection and a little savvy can do.   My son-in-law has excellent
insurance but they still try to give you the run around and hope that you
will give up.   When they realize that you won't give up then stuff gets
done!
LJ - 23 Oct 2005 22:04 GMT
it is so awful to have to fight them just when your heart is breaking from a
loved one's illness

LJ

> Good for you!   I know from experience how exasperating insurance
companies
> can be.   I've helped my Daughter and son-in-law cut through red tape for
> grandson who was born with birth defects.   Amazing what a computer
> connection and a little savvy can do.   My son-in-law has excellent
> insurance but they still try to give you the run around and hope that you
> will give up.   When they realize that you won't give up then stuff gets
> done!
Evelyn Ruut - 23 Oct 2005 22:24 GMT
> it is so awful to have to fight them just when your heart is breaking from
> a
> loved one's illness
>
> LJ

Yes, it is awful.  But no one can do it for you, and so you must find a way.
I truly hope and pray your situation gets the attention it so needs.
Signature


Best Regards,
Evelyn

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

> > Good for you!   I know from experience how exasperating insurance
> companies
[quoted text clipped - 4 lines]
>> will give up.   When they realize that you won't give up then stuff gets
>> done!
ncgen - 24 Oct 2005 13:51 GMT
You were doing what they made it necessary for you to do. Insurance
companies will give you the run around until you force the issue. I'm
glad you got a response which helps you. Keep advocating for him.   Way
to go!
LJ - 24 Oct 2005 14:35 GMT
thank you <s>
LJ

> You were doing what they made it necessary for you to do. Insurance
> companies will give you the run around until you force the issue. I'm
> glad you got a response which helps you. Keep advocating for him.   Way
> to go!
Dennis P. Harris - 23 Oct 2005 21:37 GMT
> I am not good at being forceful
> and I am worn down enough that I wonder if I am being reasonable in my
> demands. You helped me know that I had to push harder.

No guilt allowed.

When you are advocating for your loved one, you are NEVER being
unreasonable.  Don't doubt yourself, just charge ahead.
LJ - 23 Oct 2005 22:06 GMT
The on ER doctor told me to announce in a firm voice "I am not a bitch but I
love my husband" lol

LJ
> On Sun, 23 Oct 2005 12:03:59 GMT in alt.support.alzheimers, "LJ"
> No guilt allowed.
>
> When you are advocating for your loved one, you are NEVER being
> unreasonable.  Don't doubt yourself, just charge ahead.
Dennis P. Harris - 23 Oct 2005 21:39 GMT
> I am not good at being forceful
> and I am worn down enough that I wonder if I am being reasonable in my
> demands.

As my mother used to say "Illegitimi non carborundum!"  (Don't
let the bastards grind you down, and yes, it's really awful
Latin).
Mary_Gordon@tvo.org - 24 Oct 2005 16:01 GMT
Linda, I posted a couple of weeks ago about an elderly neighbour and
very close family friend who was in poor physical and mental health and
had had a seizure. She has been living alone in a big three story
house, and can no longer drive. Her three sons live far away (we're in
Toronto, and they live in Boston, Kentucky and Washington
respectively). Anyway, the biggest problem right now they are having is
the medical advocacy issue - and here in Ontario, we don't have the
nasty wrinkle of private insurance you have in the US.

That, however, doesn't improve the communication between her doctors
and various other medical professionals involved in her case right now.
Her family physician is a very nice lady, and but frustratingly
passive. She has to be endlessly reminded to follow up on test results,
ensure paperwork has been obtained or sent in, return calls etc. etc.
The hospital didn't send key information to the doctor, the doctor
didn't bother to find out where it was, meanwhile our friend is getting
worse, and can't tackle all the chasing of details herself, blah, blah,
blah. Her medication dosage was changed, and despite being asked,
nothing was sent to the care facility she's temporarily in for some
convalescence. The physiotherapist needs to be reminded several times
to get something going for her, and send the plan to the sons. And on
and on and on.

Its dawning on the sons that from now to the end of her life (which may
be many, many years from now) acting as an advocate for their mother
will be practically a full time job. One of the sons has been here for
a week now, running around like a nut the entire time, taking his
mother to appointments, chasing details and results, hammering on lumpy
doctors to be proactive, meeting with potential caregivers, checking
out facilities, bugging the physiotherapists, driving out to medical
supply places to look at walkers for her. He was over for dinner on
Saturday, and he looked completely exhausted. We're going with him
today to help interview a lady whose professional speciality is acting
as medical advocate for clients who have no famiily here.

Its a huge source of frustration. When anyone is in failing health,
they really do need someone to act as field marshall and whipcracker,
or nothing happens - and even with a lot of pushing and follow up, what
does happens takes WAY longer than it should.

Mary G.
LJ - 25 Oct 2005 14:28 GMT
It is sad that this seems to be that way so often.

LJ
> Linda, I posted a couple of weeks ago about an elderly neighbour and
> very close family friend who was in poor physical and mental health and
[quoted text clipped - 37 lines]
>
> Mary G.
Adelle - 25 Oct 2005 06:41 GMT
SO glad things are starting to move re: your husband's care. Hoping things
continue to progress so that he gets appropriate care and so you are not
being dumped on so much.

Evelyn used to make bath time a time of indulgence and pampering for her
MIL. And in the process, they were able to get clothing changed, etc. Is
there something that might help to lure your husband in a positive way which
you could then use the opportunity to get fresh clothes for your husband?

On the other hand, a former poster (John) who hade EOAD wrote eloquently
about the sensory issues the AD brought up - getting chilled easily, how the
streaming water from the shower hurt even though they had very low pressure
as they were living on a boat at the time, and how changes in the coloring
of flooring threw off his depth perception and made it seem like he ought to
step up or down when the floor was actually level. Maybe sensory issues make
your husband reluctant to go through the process of changing. Or maybe he
cannot organize the task any longer (can't figure out what to do and in what
sequence)? Depression also causes a rather lackadaisical approach to
hygiene.

Adelle

>I took all your advice to heart this last week. I sent out copies of a
> letter outlining what has been going on to each doctor and the insurance
[quoted text clipped - 17 lines]
>
> Linda Jean
LJ - 25 Oct 2005 14:35 GMT
He is in early stages but the behaviors are so odd :-). He thinks his
clothes are clean and it can't have been 3 days hahaha. He often seems to
think I am being ridiculous and just live to annoy him ;-). I can deal with
his forgetting but what I have trouble with is the bursts of hostility over
nothing. This sure is an emotional rollercoaster for both of us.
I am waiting for a call back from the personal assigned to be our advocate.
Maybe today or tomorrow
I need to get ct scan & mri copied but don't know how. That is my next task

Linda
PS my posts may say either mtn or bch as we have an apartment at the beach
because of his job but own a house up on a mtn. We are now mostly on the
mountain. The doctors are down there as is some of my family. Just to
'splain why my "from" changes....different puters lol

> SO glad things are starting to move re: your husband's care. Hoping things
> continue to progress so that he gets appropriate care and so you are not
[quoted text clipped - 17 lines]
>
> Adelle
Evelyn Ruut - 25 Oct 2005 15:05 GMT
> He is in early stages but the behaviors are so odd :-). He thinks his
> clothes are clean and it can't have been 3 days hahaha. He often seems to
[quoted text clipped - 14 lines]
> mountain. The doctors are down there as is some of my family. Just to
> 'splain why my "from" changes....different puters lol

Hi,

About the clothing/bathing issues;  We managed to get my mother in law's
clothes away and into the laundry when she undressed for bed.   We always
insisted she put on a nightgown at bedtime, and it gave us the opportunity
to "kidnap" the dirty laundry and get it out of her sight.   Also I would
help her dress in the morning, giving her clean clothing each day.

It was also a perfect time to sneak the shower in.   While she had her
nightie off and waiting to get dressed again, we'd arrange to have me
waiting in the shower and my husband would herd her down the hallway and
into the shower, where I would get her comfortably seated BEFORE I turned on
the water.   I would get the water temperature just right, and had her touch
it and approve of it before wetting her down.

Without a shower chair and the shower head on a hose, I think it would have
been very difficult to get her to bathe.    Trying to get her to
specifically take her clothes off to take a shower would immediately result
in a "no" but if we had her already undressed and getting ready for either
bedtime or to get dressed again, we would get no argument.

We learned a lot of little tricks to get gentle compliance out of her, and
we seldom had to get difficult about anything, except in the very very
beginning.

After we had a routine established, even though she couldn't remember one
minute to the next, she apparently had some sort of deeper memory that
registered routine things.   This is why I always say that alzheimer
patients seem to respond very well to routines.   Any variation from
everyday routine was confusing and either resulted in arguments, confusion,
or strange attachments to the break.   For instance my mother in law got
"stuck" saying "happy new year" and she believed every single day was new
years eve for three whole months.   Nothing could convince her it wasn't new
years.

But back to the shower thing, you have to hide his dirty clothes while he is
asleep, and don't put out any new ones till he goes for a shower.   You may
need to get adamant about it, or enlist help from someone else to get him to
go the first time.

I have to tell you this;  It was just after my mother in law's first shower
here that made me believe that maybe we COULD consider taking care of her at
home.   At first she was so incredibly smelly that I couldn't get past my
aversion at first.   Once she was showered up and dressed in clean clothing,
it was a different matter.   I think she herself felt a lot better too,
after that.

Signature

Best Regards,
Evelyn

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

>> SO glad things are starting to move re: your husband's care. Hoping
>> things
[quoted text clipped - 25 lines]
>>
>> Adelle
Adelle - 25 Oct 2005 16:13 GMT
> He is in early stages but the behaviors are so odd :-). He thinks his
> clothes are clean and it can't have been 3 days hahaha. He often seems to
> think I am being ridiculous and just live to annoy him ;-).

Well, from his point of view, he always changes every day, therefore he must
have, even if he can't actually remember having done it. That's where the
ruse which we call "loving deceptions" come in. Just like you have to find
the ways to lure a toddler into appropriate behavior (even when tantrums are
imminent), you have to find ways to do the things your husband needs to
do/have done. The difference is, you can't pick up and adult and bring them
to what they need to do, and when they tantrum, there is a lot more physical
force, so you need to do what you have to to keep yourself safe.

> I can deal with
> his forgetting but what I have trouble with is the bursts of hostility
> over
> nothing. This sure is an emotional rollercoaster for both of us.

That's where an antidepressant and possibly an antipsychotic would help.
Hopefully, that will be on board soon.  But remember, you have the cards up
your sleeve that if he gets out of control, you can call the police and say
you fear for your safety and his. It means involuntary commitment for
evaluation. It's a desperation move. But remember it's there as a safety
valve in case you feel endangered. It's not being cruel to him, even if it
may seem so. It's using every tool you have to get him appropriate care.
When the insurance system fails you, you still have a backup in the legal
system.

> I am waiting for a call back from the personal assigned to be our
> advocate.
> Maybe today or tomorrow

Why wait for them? Call today. Call twice. Let them know this situation has
been left so long it's risen to crisis level. If no one is assigned today,
call first thing in the morning the next day.

> I need to get ct scan & mri copied but don't know how. That is my next
> task

If the copies are being sent to dr's, you fill out an authorization to
release the tests to the specific doctors (have their addresses with you)
and specify the dr's want copies, not the originals. There may be a copying
fee. Then the radiologist/hospital will forward them to the dr's offices.
With HIPA, you will need to sign an authorization for release copies. In
fact, if you don't have POA (can't remember) your husband will need to sign.

Adelle
Dennis P. Harris - 26 Oct 2005 10:14 GMT
> I am waiting for a call back from the personal assigned to be our advocate.
> Maybe today or tomorrow

DO NOT WAIT.  YOU call THEM.  It's a crisis by now, and they need
to know that.  Don't nag, just be insistent that you need help
NOW, NOT tomorrow!

And be *certain* to ask about possible memory problems due to the
statins he's taking!
Karen - 27 Oct 2005 04:08 GMT
Dennis is right.  The only way out of this is through and if that means
calling after breakfast, after lunch and 3:30 or 4ish before they go home,
that's what you have to do.  Nag, nag, nag and don't feel bad about it.  If
they were doing a proper job, it wouldn't be necessary.  When you need 911,
you don't wait for them to call you back.

This is already at crisis stage and you don't need for it to escalate out of
control if that can be avoided with strategic, persistent gritching.

Karen

> > I am waiting for a call back from the personal assigned to be our advocate.
> > Maybe today or tomorrow
[quoted text clipped - 5 lines]
> And be *certain* to ask about possible memory problems due to the
> statins he's taking!
Gwen Love - 25 Oct 2005 19:37 GMT
For an AD patient not to know what to do next is not unusual.  I always laid
out Grayson's
clothes on the bed and he got dressed while I was in the kitchen.  One day
he came in holding his pants and said, "What do I do with this?"  I could
have cried.
Gwen

> SO glad things are starting to move re: your husband's care. Hoping things
> continue to progress so that he gets appropriate care and so you are not
[quoted text clipped - 40 lines]
>>
>> Linda Jean
 
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