Rosie anecdote....kinda long

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John Inzer - 05 Apr 2004 08:02 GMT

My wife and I went to see Rosie last night at the NH.
Normally, we are there in the mornings but just thought
we would see what was going on in the evening. We
are of the belief that the residents receive better care
if the family visits often and at unpredictable times.

Most of the residents were in the dining room eating
when we arrived...but Rosie was over in the corner trying
to drag a chair across the room. One of the nurses (who
was feeding one of the residents) said Rosie had been
combative and they were just allowing her some space
in hopes that she would calm down.

Rosie's food was on the table and my wife wanted to
feed Rosie so she asked Rosie to let go of the chair.
Rosie said she could not let go of it and continued to
drag it as my wife tried to lead her to the table. She
really wanted that chair for some reason...but finally
she let go and went to the table.

The nurse said she had tried to feed Rosie earlier but
she wouldn't eat. (Rosie can be extremely stubborn)
Finally, my wife managed to feed most of the food to
Rosie...including some canned pears that the Nurse
said Rosie would never eat.

After the meal, we went in Rosie's room and I sat on
the bed next to her. She was very quiet and sad looking.
My wife asked her if she knew who we were and she
did not.

I elbowed her in the ribs very lightly a couple of times
and grinned at her. For the first time in weeks she
smiled a big smile like she was having fun. It may seem
trite and unimportant...but communicating with her for
just a brief moment through that smile was absolutely
priceless.

Alzheimer's is a vicious disease.

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Evelyn Ruut - 05 Apr 2004 13:05 GMT

> My wife and I went to see Rosie last night at the NH.
> Normally, we are there in the mornings but just thought
[quoted text clipped - 35 lines]
>
> Alzheimer's is a vicious disease.

Hi John,

It certainly is. Thanks so much for sharing your story about Rosie.
Perhaps on some level she enjoyed having the special attention that you and
your wife provided, even if she didn't recognize you. I am so glad that
Ida is not combative or feisty, as it probably can be very difficult to deal
with. I am sure I couldn't have dealt with it, anyway. She is very
subdued and calm at this time and has difficulty getting around or making
her thoughts known. I think she will be a very "easy" patient to deal with
when she does go into a NH. We are working on it right now.

Regards,
Evelyn

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John Inzer - 05 Apr 2004 19:55 GMT

> Hi John,
>
> It certainly is. Thanks so much for sharing your story
> about Rosie. Perhaps on some level she enjoyed having the
> special attention that you and your wife provided, even
> if she didn't recognize you.

========================================
We think family involvement is extremely important to
the residents in a NH. Sadly, we have seen that very
few residents receive daily visits. Many of them never
have a visitor.

The AD patients may not remember they had a visitor,
but for that moment, that smile, that hug......it means
something.
========================================

> I am so glad that Ida is not combative or feisty, as it
> probably can be very difficult to deal with. I am sure
> I couldn't have dealt with it, anyway.

========================================
You are very fortunate that Ida is calm. Rosie has
always be hard to deal with...even before the AD.

More than 25 years ago she was taken to the emergency
room because of a fall and she got so agitated and
impatient over the situation that she threw a cup of
water on my wife. Because of her agitation...the Dr.
committed her to the Psychiatric ward for evaluation.
========================================

> She is very subdued and calm at this time and has
> difficulty getting around or making her thoughts known.
> I think she will be a very "easy" patient to deal with
> when she does go into a NH.

========================================
If you continue your daily involvement with Ida's
care...I think she will do fine in the NH. I must
say...don't expect too much from the NH. As much
as we would like for our LOs to have 24/7 attention
there is no way a NH can provide that.

There may be days when you go in to discover that
Ida is wet or worse and various other things that...
you never would have allowed to happen at home.
I only say this because I think you should be prepared.
========================================

> We are working on it right now.

========================================
I hope the transition is painless for you and Ida.

Rosie was unhappy about being in the NH for
a few weeks and was disoriented. She would pack
her clothes and the clothes of her room mates in
a bag or even the trash can and try to leave. She
would say she was going to the Towers.
(the Towers was a retirement highrise that she
lived in for approximately 20 years before the AD)
Even now...she will mention the Towers.

Be sure to get some permanent markers to use
for identifying Ida's clothing. "Everything" you leave
in the NH needs to be clearly marked.

Good luck.

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Evelyn Ruut - 05 Apr 2004 21:05 GMT

> > Hi John,
> >
[quoted text clipped - 59 lines]
>
> Good luck.

Thanks for the good tips, John. I realize that it isn't going to be the
kind of one on one quality care she gets at home. I just have to start
taking care of myself at this point. I am truly at the end of my rope.

Best Regards,
Evelyn

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Tumbleweed - 05 Apr 2004 23:04 GMT

<snip>

> Thanks for the good tips, John. I realize that it isn't going to be the
> kind of one on one quality care she gets at home. I just have to start
> taking care of myself at this point. I am truly at the end of my rope.
>
> Best Regards,
> Evelyn

Evelyn,

you are well past the end of any rope I could have handled :-)
Good luck, life will improve for all of you once Ida is in a home.

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Evelyn Ruut - 05 Apr 2004 23:14 GMT

> you are well past the end of any rope I could have handled :-)
> Good luck, life will improve for all of you once Ida is in a home.

Thanks, Tumbleweed. You are right and I know it....:-(

The last couple of links in the process are finally falling into place.
Today we managed to get a urine sample from a person who can't quite grasp
what you want from her anymore. The trick? We placed a big plastic
garbage bag over the entire bowl, and then put the seat back down over it.
Caught what we needed in the plastic bag then put it into the little
container, (threw out the bag), then I ran the sample over to the Dr's
office.

Then the doctor wouldn't sign the health form because they detected the
possibility of a UTI. Sent it off for a culture to find out what it is.
This will delay things a few more days. Meanwhile we got more of the
information needed filled out on the medicaid forms and the application
forms to the nursing home, and copies of the documents they require.

About this UTI thing.... I have asked her a million times if she feels OK if
anything hurts... always "no, nothing hurts".... and anyone who has ever had
a UTI knows they are not comfortable. I cannot get her to drink water or
soda or anything. She always insists she is not thirsty. I am sure they
will prescribe antibiotics for her, and I won't oppose that, though if it
was something else, I might.

Getting her to eat is a hassle too, she must be alone to eat. We cannot
even be in the same room. So someone has to eat first and someone else has
to eat last. Usually I feed her first and get her situated and ready for
bed, then run back out and finish preparing a meal for us.

Our local medical people want to get her on Lipitor for her cholesterol and
medication for her blood sugar, and test her for this and that. Sometimes
I think they just don't get it, and other times I am glad they don't. It
is a tough ethical situation when you have someone whose mind is gone yet
they insist on treating their body for every little thing and running tests
for this and that.

If she goes into a nursing home, I am sure they have their own doctor who
will probably have his or her own ideas on these things as well.

I am beginning to understand why every one told us to start moving on this
nursing home deal a lot sooner. It is very time consuming, there are tons
of red tape, and everything is "hurry up and wait"....

Regards,
Evelyn

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Gwen Love - 06 Apr 2004 18:31 GMT

Evelyn, in our cases we provided the name of the doctor; the nursing home
did not have one.
Gwen

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===========================================================
No one can walk all over you without you lying down on the ground first!
===========================================================

|
| > you are well past the end of any rope I could have handled :-)
[quoted text clipped - 44 lines]
| Regards,
| Evelyn

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Evelyn Ruut - 06 Apr 2004 18:42 GMT

> Evelyn, in our cases we provided the name of the doctor; the nursing home
> did not have one.
> Gwen

Hi Gwen,

Not sure what the ones we are looking at are doing in that area. It may be
our regular guy that will be caring for her.

Regards,
Evelyn

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John Inzer - 05 Apr 2004 23:55 GMT

> Thanks for the good tips, John. I realize that it isn't
> going to be the kind of one on one quality care she gets
[quoted text clipped - 3 lines]
> Best Regards,
> Evelyn

====================================
I don't know how you lasted as long as you have.

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