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

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So...I'm home...

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Lee - 09 Aug 2005 22:18 GMT
....well, mostly, anyway ... still spending some time at my friend's ....
going out first thing every morning ... coffee over there, then off to work
in peace & quiet for a few hours...   getting a lot more time to work on MY
stuff without the constant interuptions and aggravations

after 2 weeks of being home with her most of the time, he's decided that
it's time for LTC .... paperwork is all done...well, his part of it, anyway
...  have to get her doc to fill out another form when he gets back from his
vacation (next week)

So....  no more dithering...when a spot is available, we're accepting it...
think he'll be more inclined to follow through on that now that he has
experienced the reality of taking care of her.... and now that the whole
schedule has changed so that he has to continue doing it a lot more... he's
actually doing more of it than I am ...I have only a few afternoon/evenings
... he's got every morning.
Evelyn Ruut - 09 Aug 2005 23:21 GMT
> ....well, mostly, anyway ... still spending some time at my friend's ....
> going out first thing every morning ... coffee over there, then off to
[quoted text clipped - 12 lines]
> more... he's actually doing more of it than I am ...I have only a few
> afternoon/evenings ... he's got every morning.

So glad to hear that you guys are working it out, Lee.

:-)

Signature

Best Regards,
Evelyn

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

Gwen Love - 10 Aug 2005 01:39 GMT
Lee, nice to hear a good report for a change!
Gwen

> > ....well, mostly, anyway ... still spending some time at my friend's ....
> > going out first thing every morning ... coffee over there, then off to
[quoted text clipped - 16 lines]
>
> :-)
Songbird - 10 Aug 2005 02:10 GMT
> ....well, mostly, anyway ... still spending some time at my friend's ....
> going out first thing every morning ... coffee over there, then off to
> work in peace & quiet for a few hours...   getting a lot more time to work
> on MY stuff without the constant interuptions and aggravations

good idea!

> after 2 weeks of being home with her most of the time, he's decided that
> it's time for LTC .... paperwork is all done...well, his part of it,
> anyway ...  have to get her doc to fill out another form when he gets back
> from his vacation (next week)

Funny how she declined in two weeks, isn't it? I know it's not funny, but
you have to laugh. Some people just won't accept it until they get enough of
it themselves.

> So....  no more dithering...when a spot is available, we're accepting
> it... think he'll be more inclined to follow through on that now that he
> has experienced the reality of taking care of her.... and now that the
> whole schedule has changed so that he has to continue doing it a lot
> more... he's actually doing more of it than I am ...I have only a few
> afternoon/evenings ... he's got every morning.

I know this hasn't been fun, but it sounds like LTC will be best for
everyone, especially her. Having people who are stressed to the max looking
after you can't be the best for anyone. Now she will have well-rested people
looking after her, and she will enjoy seeing you when you visit.

I hope a good place comes open soon.

Songbird
Dennis P. Harris - 10 Aug 2005 07:02 GMT
> So....  no more dithering...when a spot is available, we're accepting it...
> think he'll be more inclined to follow through on that now that he has
> experienced the reality of taking care of her.... and now that the whole
> schedule has changed so that he has to continue doing it a lot more...

i'm glad to hear that he finally can accept reality.  i wish you
the best as you move toward getting her where she needs to be.
Lee - 14 Aug 2005 01:56 GMT
she's been making it... ~reality~ ... pretty hard for anyone, even him, to
ignore, lately ....  temper tantrums, falls, and sooooooooooooooooo much
gibberish ... just all sorts of words strung together - SHE apparently
thinks she's saying something, but there's little meaningful communication
left *sigh*

I'm finding it a lot easier to deal with her now that it's a) not all the
time, b) paid, and c), AFTER I've had time in my day to get MY stuff done.

I don't have her for the morning shift any more... I get up and go away ...
do my journalling, have coffee, work for a few hours on my stuff, then for a
couple of hours at our store... then have the afternoon either for seeing
customers or just goin' fishin' or whatever....THEN I come home and have her
for a few hours.

>> So....  no more dithering...when a spot is available, we're accepting
>> it...
[quoted text clipped - 4 lines]
> i'm glad to hear that he finally can accept reality.  i wish you
> the best as you move toward getting her where she needs to be.
Gwen Love - 14 Aug 2005 02:39 GMT
Lee, I'm so glad it is so much better for you now.  It's hard any way you
look at it.
Gwen

> she's been making it... ~reality~ ... pretty hard for anyone, even him, to
> ignore, lately ....  temper tantrums, falls, and sooooooooooooooooo much
[quoted text clipped - 19 lines]
> > i'm glad to hear that he finally can accept reality.  i wish you
> > the best as you move toward getting her where she needs to be.
Evelyn Ruut - 14 Aug 2005 02:57 GMT
> she's been making it... ~reality~ ... pretty hard for anyone, even him, to
> ignore, lately ....  temper tantrums, falls, and sooooooooooooooooo much
[quoted text clipped - 10 lines]
> seeing customers or just goin' fishin' or whatever....THEN I come home and
> have her for a few hours.

I am happy you are working out a way of dealing with it, Lee.   It really
sounds as though she is getting worse though, from what you say above.
Poor woman.  It is awful to see someone go through that.

Signature

Best Regards,
Evelyn

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

Lee - 15 Aug 2005 01:08 GMT
just got home from the hospital ... she's been admitted after having
apparently had a stroke this morning ...

I found her on the floor this morning...  got her up and she couldn't walk
unassisted... left leg is weak and just dragging. Some improvement there by
this evening (and heart rate came back up into normal range - it was very
very very low) .... but still needs a TON of help to move the few steps from
wherever to the washroom.

long, exhausting day.

she is SO unhappy about being there...   was moved to a private room across
from the nursing station about 10 minutes after we got to the floor - they'd
first put her in a ward with 3 other people up the hall but they quickly
figured out that THAT wasn't going to work.

and hubby needs a slap .... was asked re: DNR and even though we (him, his
sibs, and I) have talked and talked and talked about it, he told them to no,
that if her heart were to stop, they SHOULD call a code. Not that I want her
to drop dead, but for CRYING OUT LOUD!!!!!

think SHE knows better than him at this point... she kept disconnecting her
monitors, etc...taking the oxygen things off.... and she yanked her IV right
out of her arm.

>> she's been making it... ~reality~ ... pretty hard for anyone, even him,
>> to ignore, lately ....  temper tantrums, falls, and sooooooooooooooooo
[quoted text clipped - 15 lines]
> sounds as though she is getting worse though, from what you say above.
> Poor woman.  It is awful to see someone go through that.
Songbird - 15 Aug 2005 01:31 GMT
Oh, Lee, what a mess....

I'd be angry with him about the DNR too, but considering how much denial he
has been in, it's be to be expected.

In a case like this, doc might not be willing to release her to home and
insist that she go straight to long-term care. This may make the move easier
for him, if he can consider it "doctor-ordered."

SOngbird

> just got home from the hospital ... she's been admitted after having
> apparently had a stroke this morning ...
[quoted text clipped - 40 lines]
>> sounds as though she is getting worse though, from what you say above.
>> Poor woman.  It is awful to see someone go through that.
Jo Ann Malina - 15 Aug 2005 11:04 GMT
Lee <sleeplessinwherever@hotmail.com> is alleged to have said:
> just got home from the hospital ... she's been admitted after having
> apparently had a stroke this morning ...
[quoted text clipped - 20 lines]
> monitors, etc...taking the oxygen things off.... and she yanked her IV right
> out of her arm.

How sad, Lee.  A stroke is the last thing she and you needed now.  But
I think it will make it easier to get her into a nursing home after the
acute care is finished.

We are supposed to sign DNR orders when it's a sort of remote and
abstract possibility, not when our loved one is at death's door.  I'm
not chastising anyone, just saying that in the emotion of the moment,
he is not real likely to sign it now.  Make sure he spends time at the
hospital and sees how miserable his mother is.  That may make it easier
to let nature take its course when the time comes, and it will, sooner
or later.

Now, what did I do with the DNR form my mother's doctor gave us...

Signature

Jo Ann Malina, make spamthis best to find my address
Vex not his ghost: O, let him pass!  he hates him much
That would upon the rack of this tough world
Stretch him out longer.
                                   Shakespeare, "King Lear"

Lee - 15 Aug 2005 14:40 GMT
the doctor already raised the nursing home thing, i.e. that she may need
more care than we are able to manage at home and that the stroke will likely
impact on the amount of care she'll need in a LTC facility (and make it more
expensive *sigh*) .... don't know that hubby ~heard~ that part though. Wish
her doctor was back from his WAY TOO LONG summer off.... although he doesn't
have priviledges at the hospital which is a pain

His plan is to try to stay AWAY from the hospital - hates seeing her like
that, etc etc ... I can understand that - it is very unpleasant - but I
think you're right that he does need to be spending time up there.

Ma, of course, can't remember that her leg isn't co-operating - kept trying
to get up ...so they eventually put her in a chair with a tray that prevents
escape... she REALLY hates that

one really bizare thing though! It almost seems as though the stroke CLEARED
some small part of her brain - all of a sudden she has a much more
complicated vocabulary - using words like approximately and so on in the
right context! Words I've NEVER heard her use in more than three years. It's
very strange.

> Lee <sleeplessinwherever@hotmail.com> is alleged to have said:
>> just got home from the hospital ... she's been admitted after having
[quoted text clipped - 45 lines]
>
> Now, what did I do with the DNR form my mother's doctor gave us...
Evelyn Ruut - 15 Aug 2005 14:48 GMT
> the doctor already raised the nursing home thing, i.e. that she may need
> more care than we are able to manage at home and that the stroke will
[quoted text clipped - 16 lines]
> right context! Words I've NEVER heard her use in more than three years.
> It's very strange.

Lee, more likely that the blood thinners they are giving her are allowing
more blood to flow to areas which may have been deprived till now.

Gingko biloba works that way, which is why so often you see it mentioned as
an assistance for memory.   But the problem is that it too, is a blood
thinner, and often people who are on blood thinners by prescription think
that if they take a "natural herb" it will enhance the effect, which isn't
true.  It is like taking an overdose of blood thinners.

Signature

Best Regards,
Evelyn

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

Lee - 15 Aug 2005 14:58 GMT
didn't give her any meds at all, though

>> the doctor already raised the nursing home thing, i.e. that she may need
>> more care than we are able to manage at home and that the stroke will
[quoted text clipped - 26 lines]
> that if they take a "natural herb" it will enhance the effect, which isn't
> true.  It is like taking an overdose of blood thinners.
Evelyn Ruut - 15 Aug 2005 19:18 GMT
> didn't give her any meds at all, though

Very unusual.... after even the most minimal stroke they almost always give
blood thinners.

Signature

Best Regards,
Evelyn

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

Beth Cole - 15 Aug 2005 19:30 GMT
>>didn't give her any meds at all, though
>
> Very unusual.... after even the most minimal stroke they almost always give
> blood thinners.

It may have been a bleeding stroke, rather than a clotting stroke.  That
was what precipiated my MIL's quick decline from AD.  Unfortunately,
there isn't anything that can be done for a bleeding stroke.

Beth

Signature

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

Lee - 15 Aug 2005 22:06 GMT
from what the doc said today, they determined that it wasn't even a full
blown stroke.... CT scan did not show a major stroke... but does show
"significant brain atrophy" and evidence of many TIAs

she suggested that we should consider even taking her off of the heart
medications that she is currently on - said that they constitute more
aggressive treatment than she would recommend given how little brain tissue
remains... they're keeping her alive - and can possibly do that for quite
some time yet - but "is that the best thing we can do for her?"

hubby wasn't there for this meeting, but when I told him about it his
immediate response was "She wants to MURDER my mother?!!!!!!!!!! That would
be murder!"

I felt that the doctor was being very compassionate and really understood
the issues we were facing -  and she told us that her father has it as well,
and her mother isn't coping well. Hubby, of course, has decided that she's a
quack

Anyway ... they won't keep her much longer ... nothing they can do for her
.... meeting with the discharge planner in the morning tomorrow, her family
doctor in the afternoon, and then we have one more day in which to figure
out what we're going to do next

>>>didn't give her any meds at all, though
>>
[quoted text clipped - 6 lines]
>
> Beth
Lesanne - 15 Aug 2005 23:53 GMT
My Mom is no longer on the few medications she used to take. Frankly it did
not make any difference at all that we could tell.
Signature

Lesanne

> from what the doc said today, they determined that it wasn't even a full
> blown stroke.... CT scan did not show a major stroke... but does show
[quoted text clipped - 30 lines]
>>
>> Beth
Karen - 16 Aug 2005 01:23 GMT
We re-evaluated my MIL's meds for drugs to keep her comfortable versus drugs
for longevity.  Part of it was to not waste her money on something like
Lipitor that could even be making the dementia worse.  Part of it was facing
the reality that our goal is not to keep her alive as long as possible, but
to make sure she enjoys what life she has.  And the second part was one of
her strongest wishes when she was still competent.

Karen

---snip---
> she suggested that we should consider even taking her off of the heart
> medications that she is currently on - said that they constitute more
[quoted text clipped - 5 lines]
> immediate response was "She wants to MURDER my mother?!!!!!!!!!! That would
> be murder!"
----snip----
Lee - 16 Aug 2005 01:40 GMT
all of my MILs dementia related meds were discontinued when the doctor felt
that she was no longer gaining enough benefit to justify the ~cost~ in side
effects ....

he has, however, continued to increase her heart medications.

It's kind of odd, really - he chose NOT to treat her for high blood sugar.
And he has said that it would be kinder "if her heart took her"

Doesn't make sense to me to treat some things aggressively, ignore others,
etc.

My MIL used to say that if she ever got like 'that'  (like her sister that
had AD) she would stop taking all of her meds and be done with it... that
was why, until I got here, the word Alzheimers was NEVER EVER spoken... they
were afraid that she would refuse all her meds if she was told

> We re-evaluated my MIL's meds for drugs to keep her comfortable versus
> drugs
[quoted text clipped - 21 lines]
>> be murder!"
> ----snip----
Evelyn Ruut - 15 Aug 2005 13:07 GMT
> just got home from the hospital ... she's been admitted after having
> apparently had a stroke this morning ...
[quoted text clipped - 20 lines]
> her monitors, etc...taking the oxygen things off.... and she yanked her IV
> right out of her arm.

Hi Lee,

So sad to hear of her illness, but it may turn the tide......  it may make
it easier for her to go into a nursing home directly.

About the DNR.... when I went to a hospital with a broken shoulder they
asked me if I had a DNR.   I later returned to a different hospital to have
repair surgery and then later again to remove the metal pins, and each time
they asked me if I had a DNR.   The hospitals are getting tougher about
that.

Sounds to me like your husband is just simply ignorant of the fact that his
mother has a terminal brain disease that will ultimately kill her anyway,
and that NOT having a DNR in place will surely prolong the misery of her
passing.

He really ought to make himself more familiar with the illness and her
prognosis.   If she has a stroke or another "event" what chance has she got
for a quality existence if they DO go into heroics trying to save her?
None.

She isn't going to get better.   Heroics are for people who have even the
slimmest chance of a quality existence.   Anything else is simply cruelty.

Sorry if anyone doesn't agree, this is just my opinion.

Signature

Best Regards,
Evelyn

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

Lesanne - 15 Aug 2005 15:30 GMT
Regarding DNR's someone told an awful story of a person who had a feeding
tube put in when the family did not want it.

This caused me to call the attorney to be sure we were covered. Mom signed
all those papers (DNR, MPOA, directive to physicians) all years ago and I
have them here in my desk ready in an envelope just in case something should
happen that requires 911 when I am out of the house.

When an elder has an income that will support a nursing home it is really
important to have your legal ducks in a row, or they can and do ambush
people. Our Doctor is totally on our side as well. She plans to come here
when Mom gets to the terminal stage as opposed to going into the hospital at
all.

A broken bone would be a bad thing for us, but I think we could manage to
protect her from the vultures.

Signature

Lesanne

>> just got home from the hospital ... she's been admitted after having
>> apparently had a stroke this morning ...
[quoted text clipped - 46 lines]
>
> Sorry if anyone doesn't agree, this is just my opinion.
Mary_Gordon@tvo.org - 15 Aug 2005 19:57 GMT
Eveylyn is right. If your hubbie had seen what the later stages of
Alzheimer's bring, he'd get down on his knees and start praying for
something ELSE to carry her off, quickly, painlessly and long before
she becomes a shell of herself.

A friend of mine's mother died from aspirating banana pudding (she was
chipmunking and no one realized it). She was just starting into later
stage AD, but was still able to walk, recognize people, talk etc. At
the time, we were all horrified by her sudden death, but my friend is
now VERY glad that her mother never had to go through what my poor MIL
did.

My mother in law's personal curse was that she was physically healthy
other than the AD - so she had no other major frailties like heart or
lung problems or cancer to help her on her way. She soldiered right on
to the inexorable end of Alzheimers - not much more than a living shell
for the last two years of her life. Seems crazy to wish for illness,
but we even prayed for pneumonia. We had a DNR, but also a palliative
care only agreement - we agreed to keep her comfortable, but anything
with a potential to be her escort out of the twilight zone was to be
left to follow its course. In the end, it was AD that took her - she
gradually stopped eating, and it took 6 excruciating weeks for her to
go.

I swear, if it wasn't against the law, my husband would have put a
pillow over her face, he was THAT anguished that there was nothing that
could be done for her and she was so completely without any quality of
life.

At this point, your husband is not thinking clearly about what is best
for his family OR his mother. I think guilt, fear and reluctance to let
go are driving the boat still at this point. Its very, very hard to
look ahead and really see whats coming, much less accept the
inescapable nature of it emotionally and be ready to deal with it.

Mary
Songbird - 15 Aug 2005 21:56 GMT
> I swear, if it wasn't against the law, my husband would have put a
> pillow over her face, he was THAT anguished that there was nothing that
> could be done for her and she was so completely without any quality of
> life.

I have two much beloved dogs who contracted cancer that we were allowed to
put to sleep when they entered the painful stage. I have never regretted it,
and I know my surviving dog has a problem which may cause that same decision
in the next year.

And yet -- we *value* human life so much more that we think any form of it
is better than death. I have never understood, especially to those who
believe in a desirable life hereafter, why we can't have some way to let
people simply go to sleep and not wake up. To avoid abuse, put all kinds of
legal hoops and medical review boards on it to get the legislation passed.
But it seems odd to me that we feel more compassion to suffering animals
than to suffering humans.

Songbird
Lesanne - 15 Aug 2005 23:41 GMT
My Mom is also very healthy. The Doctor is hoping for heart failure :)

I relate to the pillow bit too, I am rather pleased to know that I am not
the sort of person who could do a thing like that.
Signature

Lesanne

> Eveylyn is right. If your hubbie had seen what the later stages of
> Alzheimer's bring, he'd get down on his knees and start praying for
[quoted text clipped - 32 lines]
>
> Mary
Karen - 16 Aug 2005 01:12 GMT
The sort of person that is strong enough to consider ending a loved one's
suffering?  When the body of Terry Schiavo was finally allowed to die, we
were discussing it at work and my one overwhelming thought was "What a
tremendous act of love, to love someone enough to let them go and follow
their wishes."

I've had 3 pets over the years that I've had to euthanize because there was
no hope of recovery but great suffering occurring.  Each time, I've tried to
figure out why our society allows us to give this mercy to our pets but goes
to great lengths to not only make sure I can't end my own suffering but make
sure no one else does either.  There are worse things than death.  IMO, it's
a travesty that anyone assisting me in my wishes would be prosecuted.  I
respect the wishes of any one opposed to the idea, I don't understand why
they can't respect my wishes.

OTOH, everyone in my family knows I've done the documents to keep this
decision in the hands of me or my designated representative.  It's a
personal issue, but one I feel strongly about.  It seems our society
understood the issue better before we had the technology to keep the body
going long after it should have shut down.

Karen

> My Mom is also very healthy. The Doctor is hoping for heart failure :)
>
[quoted text clipped - 36 lines]
> >
> > Mary
Lee - 16 Aug 2005 01:29 GMT
according to one of my SILs, my MIL may have documented her wishes ... the
doctor today advised us to find them, as that would trump my partner's
direction to try to ...darn, can NOT spell that word!! ...resuscitate.

key to the most likely place for them to be stored is lost.... and he
doesn't seem inclined to break into the lock box....  *sigh*

> The sort of person that is strong enough to consider ending a loved one's
> suffering?  When the body of Terry Schiavo was finally allowed to die, we
[quoted text clipped - 64 lines]
>> >
>> > Mary
Lesanne - 16 Aug 2005 03:50 GMT
Ah. The sort of person who can take good care of her, leave when she goes to
God, and not interfere with either things such as feeding tubes or other
obnoxious torture, but still not do anything that would put it on ME, when
this is not ever about ME.

She is 91, and often afraid and always not sure what is going on. More or
less miserable quality of life, but she still eats with good appetite and
enjoys a ride in the car. So I cook and drive and I got a helper so I could
do things on my own.

I have an old Doberman, who has bumps and lumps that we just found out are
lipomas. I was prepared to be involved in a decision to end her life if she
began to suffer, but joyfully that is not looking like that will happen any
time soon. My value system is such that I do not feel it is my decision when
Mom goes.

Signature

Lesanne

> The sort of person that is strong enough to consider ending a loved one's
> suffering?  When the body of Terry Schiavo was finally allowed to die, we
[quoted text clipped - 64 lines]
>> >
>> > Mary
Jo Ann Malina - 18 Aug 2005 08:59 GMT
Mary_Gordon@tvo.org is alleged to have said:
> Eveylyn is right. If your hubbie had seen what the later stages of
> Alzheimer's bring, he'd get down on his knees and start praying for
> something ELSE to carry her off, quickly, painlessly and long before
> she becomes a shell of herself.

Hmmm.  Has he seen these people when touring Alzheimer's facilities,
looking for a place for his mom?  You are doing that, right?  It might
clue him in.

I saw some Alzheimer's patients being fed when I sent to visit my uncle
in a facility in Florida (he had other problems, not AD).  They were
pretty much immobile, a pair of staring eyes, a mouth that took in the
spoon offered to it, like an infant.  What I don't know is whether the
person trapped in the body was suffering.  At that point there was
probably nobody home any more.

Signature

Jo Ann Malina, make spamthis best to find my address
It is the duty of a doctor to prolong life and it is not his duty to
prolong the act of dying.    -- Thomas, Lord Horder

Gwen Love - 17 Aug 2005 01:39 GMT
Oh Lee, I'm so sorry about all this.  It would be ideal to move her from the
hospital to a nursing home.  A shame your husband just really doesn't seem
to get what this is all about (can you get away with the slap?)!
Gwen

> just got home from the hospital ... she's been admitted after having
> apparently had a stroke this morning ...
[quoted text clipped - 40 lines]
> > sounds as though she is getting worse though, from what you say above.
> > Poor woman.  It is awful to see someone go through that.
Lee - 17 Aug 2005 01:52 GMT
not going to be possible (because of politics and BS and because of the fact
that up until she was admitted to hospital, she smoked and we didn't know to
lie about it when we should have!) ... but we've got the info we need now
... and hubby's gotten a whole lot more realistic.

We are pursuing a "crisis placement" and should be able to get something
very quickly - and we now have people (with influence and access to
information that we don't have) on our side

> Oh Lee, I'm so sorry about all this.  It would be ideal to move her from
> the
[quoted text clipped - 62 lines]
>> > sounds as though she is getting worse though, from what you say above.
>> > Poor woman.  It is awful to see someone go through that.
Pattycake - 16 Aug 2005 05:38 GMT
You said you're meeting with a discharge planner tomorrow.  You need to be
totally honest with them about your concerns.

Most Discharge Planners have seen this type of situation before, and
hopefully you'll get a good one that can help him make good sound decisions
to keep his mother safe.

It sounds like there is something deep inside him that is pushing his
denial.  Perhaps it's guilt for a past offense, perhaps it's a glimpse of
his own mortality.  Whatever it is, he needs to get over it and think about
what is best for his mom and her safety.

It's so hard, but it's not impossible.

I'm sorry you're going through all this, and fighting upstream along the
way.

My toughts are with you,

Patty
Lee - 16 Aug 2005 01:46 GMT
*sigh*   thought he was making progress in that respect... guess not... sure
has back slid in a hurry, anyway

he doesn't think that, even given that she can no longer walk independently-
nor REMEMBER that she can't walk independently-  we should ask for a crisis
placement .... we're going to bring her home day after tomorrow and somehow
cope until her name comes up on the wait list...  (9 months to a year)

if bedrails don't work, she gets a mattress on the floor - then she can't
fall out

we'll get a wheelchair and a shower chair and .... figure out something ....

"we can do it"

this just SUCKS

we can NOT

>> So....  no more dithering...when a spot is available, we're accepting
>> it...
[quoted text clipped - 4 lines]
> i'm glad to hear that he finally can accept reality.  i wish you
> the best as you move toward getting her where she needs to be.
Karen - 16 Aug 2005 02:12 GMT
Lee, I hope you don't need this tip, but it sounds like you may.  At my
MIL's place, one of the ladies broke a hip and couldn't remember that she
couldn't walk.  They kept her in a wheelchair with a wide belt around her
middle that was fastened in back.  She couldn't reach it and couldn't fall
out.

Good Luck.

Karen

> *sigh*   thought he was making progress in that respect... guess not... sure
> has back slid in a hurry, anyway
[quoted text clipped - 14 lines]
>
> we can NOT
JM Van_Horn - 16 Aug 2005 02:27 GMT
Lee, I'm sorry this is happening.

I recall you posting, while you were staying elsewhere, that you and he were
working it out so you would not have to do any of the "mommy sitting".  You
emphasized that.  When you went back, it seemed ok to me, even though
you were still doing some afternoons and evenings.  But now, it appears
that you are back in almost the same situation with him, (I'm sorry to say
this..) using you.  Him not going to the hospital conference, and avoiding
the hospital is very irresponsible.  He put it all on you again and then
insists it be done his way.  The decision to bring her home sounds
like a train wreck in progress.  Frankly, if it were me, I'd leave
again, but perhaps the situation will be short-lived and you think
it will be bearable.

I hope it is.            Joan

> *sigh*   thought he was making progress in that respect... guess not... sure
> has back slid in a hurry, anyway
[quoted text clipped - 14 lines]
>
> we can NOT
Lee - 16 Aug 2005 05:36 GMT
the meeting with the doctor today was entirely without notice...not fair to
expect that he hang out there all day on the chance that she'd come in
....and one of us DOES have to work sometime.... it's the only income we
have right now.......  and he is going to both meetings tomorrow ... has
booked the entire day off. (Which means we pay more out for staffing than we
are likely to take in.... it SUCKS, but t'is the nature of the business....
weekdays are often pitiful ... but if we're not open for 'em, they won't
come on the weekends, when we make the bulk of our earnings, either)

Plus he did go up with me this evening - and had no objection when I told
him, when she said that she needed to go to the washroom - to my telling him
that I thought that he needed to be the one to 'walk' her there.... I or the
nurses was doing it yesterday, but I really think that he needs to FEEL the
difference, i.e. how much more work it is to get her from one place to
another now. Unfortunately, once he got her up to go, she changed her mind
and refused and he didn't get the ~pleasure~  ....but he most definitely
will

and up until this episode, he's been doing every morning since I came home,
while I've only been doing 3 or 4 evenings a week .... for which I'm paid,
now....

I do have major concerns about the decision to bring her home.... I honestly
don't think that even with the home care we have we can manage to cover not
only all day but all night every night as well

Especially with her no longer able to walk independently ... the care just
became a whole lot heavier ... hopefully we'll sort a more realistic plan
out tomorrow

> Lee, I'm sorry this is happening.
>
[quoted text clipped - 37 lines]
>>
>> we can NOT
JM Van_Horn - 16 Aug 2005 06:44 GMT
It's good that he's going to both meetings tomorrow.  If it were me,
I would break down in tears during both of them.

When Mom broke both hips, she could neither walk nor remember that
she couldn't.  The hospital wouldn't release her to anywhere but
a nursing home.  If, at these meetings, you broke down and
displayed your own stress, perhaps emergency placement could
be considered more seriously.

Just thinking about the constant physical support involved in the care of
your MIL makes my back hurt.

I hope something very good happens tomorrow/today.

Joan

> the meeting with the doctor today was entirely without notice...not fair to
> expect that he hang out there all day on the chance that she'd come in
[quoted text clipped - 16 lines]
> and up until this episode, he's been doing every morning since I came home,
> while I've only been doing 3 or 4 evenings a week .... for which I'm paid,

> now....
>
[quoted text clipped - 5 lines]
> became a whole lot heavier ... hopefully we'll sort a more realistic plan
> out tomorrow
Evelyn Ruut - 16 Aug 2005 11:51 GMT
Hi Lee,

I agree with Joan, below.

I truly hope he reconsiders the idea of taking her home after speaking with
the doctors.

Best of luck to you!

Signature

Best Regards,
Evelyn

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

>
> It's good that he's going to both meetings tomorrow.  If it were me,
[quoted text clipped - 56 lines]
>> became a whole lot heavier ... hopefully we'll sort a more realistic plan
>> out tomorrow
Songbird - 16 Aug 2005 02:30 GMT
> *sigh*   thought he was making progress in that respect... guess not...
> sure has back slid in a hurry, anyway
[quoted text clipped - 16 lines]
>
> we can NOT

When my GMIL reached similar state, doctor would not sign discharge order
until NH placement was found. Her husband (a real SOB) denied she needed NH
care because he didn't want to spend the money.

Any chance doc can work with you?

Songbird
Beth Cole - 16 Aug 2005 02:59 GMT
> if bedrails don't work, she gets a mattress on the floor - then she can't
> fall out
[quoted text clipped - 6 lines]
>
> we can NOT

"We" will do nothing.  HE must do it all.

That is the ONLY way that he is ever going to understand that there is
no way to do this at home.

My grandfather was discharged from the hospital after emergency prostate
surgery on a Friday, to the care of my grandmother (she was in her
mid-80's and fast going blind, but she was still very sharp).  She
insisted that she could care for him.  After two days with no help, she
called my father and said "I can't do it." Grandpa was in the nursing
home aboud 48 hours later.

Stark confrontation with reality will probably be the only thing that is
going to shake him out of this.  And you doing anything to enable him to
continue in his denial won't help bring about the confrontation.

Beth
Evelyn Ruut - 16 Aug 2005 03:01 GMT
> *sigh*   thought he was making progress in that respect... guess not...
> sure has back slid in a hurry, anyway
[quoted text clipped - 16 lines]
>
> we can NOT

You are right.  You probably can't.

Lee, we switched Ida to just a mattress and box spring on a low frame with
no wheels, and she still fell down, because she just couldn't walk straight
anymore.    She fell down walking from the sofa in the living room just down
a straight hallway to the toilet.   She fell down trying to get from her bed
to the bathroom, just across from her bedroom door.    We had to literally
hold her up when she had to go from point A to point B, and she couldn't
remember that she couldn't walk anymore, so she kept trying.

We HAD a shower chair, we had a wheelchair, we tried everything.   We still
could not manage.

At the nursing home they put her in a wheelchair with a foam pad across the
front, that she couldn't get out of, and they put her on a toileting
schedule so she wouldn't have to be waiting to go when she had to.   They
had alarms on the beds if she got up or tried to get up, the nurse was
alerted.   She STILL fell from time to time.. even there.   They had very
low beds with pads on the floor, so if they did fall, it would be on  a foam
pad.   They had the bed set up so that one side was always up, and the other
always down.   That way she couldn't fall on the wrong side where there was
no pad.

I think your husband is really suffering from some kind of guilt issues or
something.  He is afraid to let her go, for fear of not having his mommy
around anymore.   He is afraid of being "the older generation" or something
like that.  I am beginning to believe from what you are saying that it isn't
for a single minute about HER, it is all about HIM, and something HE can't
seem to work out in his head.   Especially when you mentioned that he won't
even look to see what her directives were when she was in her right mind.
That would be disrespectful of the woman he claims to love so much.

He is probably going to fall all to pieces when the poor woman finally is
freed from her illness.   Not for nuthin' (like we say in New York) but he
honestly ought to consider going to some kind of a counselor to work out his
issues.   He is just not dealing with this with any kind of sense.

Sorry for being so blunt, but it is just my dumb and uneducated opinion, so
please forgive me if I have overstepped.....

If he insists on this course of action, you should do what you did before.
Let him do EVERYTHING until he literally burns himself out and finally
realizes it is time to make another plan.

Signature

Best Regards,
Evelyn

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

Dennis P. Harris - 16 Aug 2005 10:04 GMT
> If he insists on this course of action, you should do what you did before.
> Let him do EVERYTHING until he literally burns himself out and finally
> realizes it is time to make another plan.

I hate to post a "me too" post, but Evelyn is right.  He needs to
deal with it entirely by himself.  You need emergency placement.
Insist on it, or he's doing it all by himself.  

Evelyn's right about another thing;  he needs counseling.  Call
your local hospice and ask about counseling session for folks in
his situation.
Lesanne - 16 Aug 2005 03:55 GMT
hoo boy, this just is amazing. My thoughts are with you.

Signature

Lesanne

> *sigh*   thought he was making progress in that respect... guess not...
> sure has back slid in a hurry, anyway
[quoted text clipped - 25 lines]
>> i'm glad to hear that he finally can accept reality.  i wish you
>> the best as you move toward getting her where she needs to be.
Lee - 17 Aug 2005 01:36 GMT
meetings went much better than I would have anticipated....  hubby and I
both had a few words with family members...  but got past that - whole
family was here, even the daughter that NEVER comes and her husband

had discussion with her doctor re: her wishes (expressed when she was still
relatively competent), got the paperwork done re: DNR order, got info we
needed re: LTC options ... there's only one bed for a female available in
our county at the moment - and it's a nasty drive of more than an hour ...
but looking both at that option and at placing her elsewhere (beds available
in a town near one of her daughters, apparently) - still an hour from us,
but at least the one would be right nearby ....

we are going to bring her home in the meantime... not long term... but
because of the way the system here currently is - if she's at home and can't
be cared for any more she has a much greater priority than if she's in a
hospital

in other words, we're manipulating the system, but what the heck ...whatever
works

got OT, nursing care and home care set up to start Friday... most of the
equipment we know we'll need for Thursday, and hiring additional help for as
long as she's here

AND on an unrelated note (aside from how much stress it was causing me) my
oldest daughter's financial aid for school has been approved as of today so
that's all set.

oh...and I have a very promising looking job lead to follow up on, am making
real progress on the book and the database projects that I've been (supposed
to but not really) working on

I am SOOOOOOOO thankful that I had that 2 week break!

> hoo boy, this just is amazing. My thoughts are with you.
>
[quoted text clipped - 28 lines]
>>> i'm glad to hear that he finally can accept reality.  i wish you
>>> the best as you move toward getting her where she needs to be.
Evelyn Ruut - 17 Aug 2005 02:56 GMT
> meetings went much better than I would have anticipated....  hubby and I
> both had a few words with family members...  but got past that - whole
[quoted text clipped - 30 lines]
>
> I am SOOOOOOOO thankful that I had that 2 week break!

I am so glad things are working out for you, for your daughter's school, and
your mother in law.   Maybe hubby just needed to be a part of a group
scenario where the onus is not just only on him alone, to see the wisdom of
placement.  Having the rest of the family there made it all OK in his head,
maybe.   In any case, it sounds like it is all working out.   :-)
Signature


Best Regards,
Evelyn

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

Lee - 17 Aug 2005 03:59 GMT
definitely didn't hurt to have to keep explaining his stance... trying to
justify it to each person etc.... the more he tried, the more he came to
realize that some of what they had to say had value .... and the more he had
to ~offer~ in terms of accomodations (we'll put her on a bed in the living
room and we'll move into her room; I'll get up with her at night.... etc etc
.... ) the more he seemed to grasp just how HUGE an undertaking the whole
thing would be.... and that it's just not realistic

And then the doctor was very very good .... very realistic, very direct, and
very supportive, and told us a lot about how to work the system.... talked
to him about what the outcome would likely be if there were to be a code and
she were ~successfully~ revived .... i.e. it would be just as disastrous as
an anaesthetic at this point.... also very direct about the potential for a
broken hip and how horrible THAT would be for her, etc....

by the time we got home, he'd come a very long way.

Whole thing is hard on everyone ....  but especially on him ....  but he's
dealing a whole lot better now.

>> meetings went much better than I would have anticipated....  hubby and I
>> both had a few words with family members...  but got past that - whole
[quoted text clipped - 36 lines]
> of placement.  Having the rest of the family there made it all OK in his
> head, maybe.   In any case, it sounds like it is all working out.   :-)
 
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