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

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s.valentine - 22 Sep 2005 04:14 GMT
Hi     everyone, I have another question. My father spent the night with my
brother and sister in-law the other night, to give me a break. They said he
woke up the next mourning and did not know where he was or how he got there.
He also had two bathroom accidents. When he  came home he kept thanking me
for all I do. Then he ask me why he was here? He is like a different person.
He has had tias before, If he had another could this make him worse or do
you think he may be going into a different stage. His DR. is out of town
until Monday.. Has anyone went through anything like this?   s  valentine
Lee - 22 Sep 2005 05:29 GMT
my guess would be that it's a reaction to change.... and that he's likely to
settle down now that he's back with you ....

long before my MIL was anywhere near as bad as she is now, 2 of her
daughters took her to a resort for a few days.... it was horrid... she was
totally discombobulated, and had all sorts of problems that she'd never
exhibited to that point (including toileting ~issues~) ... took her a while
to settle back in at home ... but she did ... and we never tried that again.

Even having them come here while we go away tends to cause some
deterioration ...  to a lesser degree though.

now that she has deteriorated a whole lot more - to the point where even
when she's at home nothing FEELS like home to her, and she's constantly
asking to go home... I don't think it would matter too much ... she adjusted
to the hospital quite well, and again to her return home...  but in the
early to mid stages, I think changes like that are very very difficult for
the person to deal with.

> Hi     everyone, I have another question. My father spent the night with
> my brother and sister in-law the other night, to give me a break. They
[quoted text clipped - 5 lines]
> DR. is out of town until Monday.. Has anyone went through anything like
> this?   s  valentine
The Turd Burglar - 22 Sep 2005 05:36 GMT
I have!!!  Yeah they are a totally different person.  You can't even
trust them anymore.  Just make an appt. with the DR. and check it out!
Tumbleweed - 22 Sep 2005 09:02 GMT
> Hi     everyone, I have another question. My father spent the night with
> my brother and sister in-law the other night, to give me a break. They
[quoted text clipped - 3 lines]
> different person. He has had tias before, If he had another could this
> make him worse or do you think he may be going into a different stage.

Either or both ,people dont 'move' into stages cleanly, they deteriorate and
stages are just a shorthand way of summarising/simplifying where they are at
any particular point.

> His DR. is out of town  until Monday..

>Has anyone went through anything like this?

Probably everyone here.

Signature

Tumbleweed

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

Evelyn Ruut - 22 Sep 2005 12:16 GMT
> Hi     everyone, I have another question. My father spent the night with
> my brother and sister in-law the other night, to give me a break. They
[quoted text clipped - 5 lines]
> DR. is out of town until Monday.. Has anyone went through anything like
> this?   s  valentine

Stages, in alzheimers, are not sharp delineations where a person suddenly
goes into "the next" stage.   The progression is more gradual, and what we
call "stages" are more for us to try and measure what abilities they have
lost, or still have.    Few people are in any clear cut stage, they might
have some of the symptoms of one stage and some of the symptoms from
another, never fully fitting into one category, but more in general in one
category than another.

I went through something like what you describe with my mother in law when I
had to drive 100 miles to visit my father one Saturday, and I thought I
could take her along and keep her out of my husband's hair for that few
hours.   We started out just fine.   We got to my father's house and sat and
visited for a bit, when she began demanding to go home.   She got pushy and
snippy about it.   She refused to use the toilet there, and I knew that
after a couple of hours of driving, she surely must have had to "go" but she
continued to refuse.   Her demands to be taken home got more pressing and
more angry.   My father said I should take her home if that was what she
wanted.   Naturally, he didn't realize how confused she was.   Nothing I
could say would put her off.... that we'd only just gotten there didn't
matter.

Okay, so I reluctantly got her settled into the car and began the long trip
home.   Well that trip was sheer hell.  She had no idea who I was.   She was
very snippy with me, very demanding and rude, and continued berating me the
whole two hour trip home.   It was as though I was purposely keeping her in
the car on some ride and making home further away than it really was, in her
mind.   Nothing I could say or do would shut her up or placate her.   She
said she wanted to go home RIGHT NOW!   Telling her we were going home
didn't matter.  She wanted home to be closer than it was.

When I told her I was her daughter in law, I was 'Evelyn,' she acted as
though she didn't understand the words.   When we finally did get home from
that endless journey, she told my husband to "pay that woman" who took her
home.   I was stunned, because she seemed to have totally disconnected with
the life she was living and all that was familiar in it, including me, our
car, and nothing could reach her.

Later on, after she went to bed and got up the next morning in her own bed,
she remembered who I was again and went through her usual, normal routine.
This is why I always say they seem to THRIVE on routine.   Being unable to
relate to new experiences, they also seem not to enjoy new experiences
anymore, the way normal people do.

Of course like we always say here, your experience with a loved one might be
different, but I have heard enough reading in this newsgroup to make me
believe it is quite typical.   Taking your loved one on a trip might sound
like a good idea, but have a ready bail out plan!    It was on that day that
I realized my mother in law was probably getting a lot further along than I
realized, in her illness.

Signature

Best Regards,
Evelyn

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

s.valentine - 23 Sep 2005 01:51 GMT
Hello all, I just want to say thanks! I do not know how long each of you has
been dealing with your loved one, but what you all had to say was what
happened   Today             was a normal day for him. It took 2 days to get
back to him knowing what was going on but he knows now. I have only been
dealing with this a little over a year, how long have some of you been
taking care of someone?
                                    Thank you!
                                        s valentine
Gwen Love - 23 Sep 2005 04:35 GMT
I looked after my husband a little over 6 years.  He died in March 2001.
Gwen

> Hello all, I just want to say thanks! I do not know how long each of you
> has been dealing with your loved one, but what you all had to say was what
[quoted text clipped - 4 lines]
>                                     Thank you!
>                                         s valentine
LindaJean - 23 Sep 2005 14:19 GMT
My husband is just being tested for the level of dementia

Linda
> Hello all, I just want to say thanks! I do not know how long each of you
> has been dealing with your loved one, but what you all had to say was what
[quoted text clipped - 4 lines]
>                                     Thank you!
>                                         s valentine
Tumbleweed - 23 Sep 2005 16:45 GMT
> Hello all, I just want to say thanks! I do not know how long each of you
> has been dealing with your loved one, but what you all had to say was what
[quoted text clipped - 4 lines]
>                                     Thank you!
>                                         s valentine

my mother cared for about 5 years from the time he was really bad until he
had to be placed due to deterioration.

Signature

Tumbleweed

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

s.valentine - 24 Sep 2005 03:23 GMT
Hi everyone, after reading your replies, I feel really sad about what you
have went through. Until my father became ill I had no idea how  this
illness sucks the life out of the person who has it and the caregiver, I
don't know if I can do this another year. Some of you have had to deal with
it for years. I just want to say you all must be very special people. so
valentine
Pat Stewart - 24 Sep 2005 05:42 GMT
15 years for my mom.  It varies based on health issues in each individual.
> Hello all, I just want to say thanks! I do not know how long each of you has
> been dealing with your loved one, but what you all had to say was what
[quoted text clipped - 4 lines]
>                                      Thank you!
>                                          s valentine
Octavia - 26 Sep 2005 19:17 GMT
Unfortunately, I just experienced something similar with my MIL. I had
already been thinking maybe my SIL & BIL could take her for a night maybe
once a month, as they live just up the street.. After yesterday, I'm not
sure if that would work.

We are just north of Houston. Although Hurricane Rita could have been
infintely worse, even for us here this far north of the coast, we didn't
fare too bad. We did lose power for almost 2 days. It was weird. Part of the
neighborhood did have power. So yesterday afternoon, with the temp rising to
unbearable temp with no AC or even a fan, we went up to my SIL's to get out
of the heat for a while. Even my MIL, who seems to take heat much better
than we do, was starting to look a bit wilted. They wanted to fix us dinner
so hubby & I left for a little bit to let the dogs out & close up the house
(the lights had just come back on). She wanted to come back with us but we
told her it was still way too hot & we were coming right back anyway for
supper, explaining we had to let the dogs go potty. In that small amount of
time we were gone, my SIL had heck with my MIL, trying to keep her there.
She kept insisting she wanted to go home. She had only been there a couple
of hours.

After we got her settled in last night, I told my husband I thought it was
to the point that she'd want to be here even if half the house burned
down.... She was beginning to show signs of confusion the night before, just
after not having lights & TV all day. She understood we didn't have lights
but occassionally tried to turn a light on anyway. That night, I showed her
the battery operated tap lights we had in her bedroom & bath. She told me
she knew how to operate them, because she had one "at home". She kept
repeating that & kept turning it off & on. I just let her, because I wanted
her to be comfortable with it. Finally I quietly said "you *are* at home".
So sad - I know in her mind, she probably was back at least 10 or 15 years,
when she had her own home that she'd lived in for at least 25/30 years
before moving into my SIL's house. She doesn't usually talk like that. Even
there in her room surrounded by all her furniture & things, she was a tad
messed up. I thought to myself about the ones less fortunate who are in
nursing homes with only about a box worth of their belongings to make the
place homey. I know it was just the strain of the "changes" (like others
have discussed here). For her, going without lights & TV all day was too
much, enough to make her vocalize the thought that she wasn't "at home".

Even though I'm still new to this horrid "disease" (or however it is
called), I have to agree with others. From my observation & recalling the
things my SIL has told me over the years, I think unless they do have like a
bad TIA, the "stages" are gradual. And from what you just experienced, any
kind of change sure doesn't help. Apparently even if we perceive it as a
positive, even temporary change. I'd love to begin to explore & utilize the
adult day care places, where she & I could at least have a break from each
other & she for her same surroundings for a few hours maybe once or twice a
week. I've been thinking she would probably like being around others where
they listen to music, do chair exercises & such. But after my observations
of the last couple of days, I just don't know. I guess we can just try & see
what happens. Obviously a time out *does* work for some people. My
suggestion is that you try it one more time. Maybe the second time, he will
be calmer. If not, then you know you can't ever try it again.

As a side note, I think it is marvelous that he thanked you for everything:)
~~~Octavia

> Hi     everyone, I have another question. My father spent the night with
> my brother and sister in-law the other night, to give me a break. They
[quoted text clipped - 5 lines]
> DR. is out of town until Monday.. Has anyone went through anything like
> this?   s  valentine
Mary_Gordon@tvo.org - 26 Sep 2005 20:36 GMT
The really sad thing, Octavia, is they do reach a point where it
doesn't matter if they are in their own homes, their daughter's home,
daycare, an institution or a Motel 6 in Peoria. They can be surrounded
by their own things, or have nothing left but what goes in a shoebox
and it doesn't make any difference. Every place is confusing and
confused. Nothing seems familiar. Nothing makes sense.

By the time my MIL went to assisted living, I swear to you, she could
have been just about anywhere. Life itself had become distressing, no
matter where she was, since she just couldn't get grasp what was going
on, where she was, what was happening to her. She was at sea in the
fog.

What begins to matter is not where they are or even who they are with,
but having a routine. Most of our loved ones have done far better in
daycare or assisted living than we would have thought. Places like
adult daycare or assisted living for dementia patients are usually
superb at providing the structured routine and stimulation that they
need and do best in - often much better than we can do in a home
environment.

M
Pat Stewart - 27 Sep 2005 02:46 GMT
Mary is absolutely right.  Sometimes it doesn't matter where they are, they
want to be someplace else.  There are some people who always want to go
somewhere - it's that place called "home."

Home can be so many things to these people.  It can be back to the way they
were before the disease took over, or it can be just someplace that looks
familiar.

It's the elusive "home" that makes me so sad.

My suggestion always is to take your loved ones to a good AL that deals with
dementia while they can enjoy the activities, the companionship, and the
routine that we provide.

I know it's hard, I've been there myself, but most people really do enjoy
the routine, and the attention they get from staff members who aren't
stressed to the max because they're watching their own loved ones disappear.

Routine is so important.  It can usually help with the need for the ever
elusive "home".

Patty
> The really sad thing, Octavia, is they do reach a point where it
> doesn't matter if they are in their own homes, their daughter's home,
[quoted text clipped - 18 lines]
>
> M
Octavia - 30 Sep 2005 16:56 GMT
Really appreciate your comments.

The routine you talk about makes sense. Once we got moved in & settled, we
have established a routine. My SIL commented just yesterday she thinks her
mom is much happier now (having us here). But after she'd gone without
lights for a whole day, routine was mostly definitely interrupted. No TV all
day, no lights. All of us (even me - who is usually the one to be with her
all day long) were in & out of the house, getting the yard picked up. From
what you & others have mentioned about routine, I can now easily see that
was precisely what messed her up so bad. After the lights came on, she was
completely exhausted that first day. All is back to normal "routine" now -
she's doing fine. (Knock on wood - with this mess, you never know when a bad
day will pop up)
> Mary is absolutely right.  Sometimes it doesn't matter where they are,
> they
[quoted text clipped - 44 lines]
>>
>> M
Octavia - 30 Sep 2005 16:48 GMT
Thanks so much for your insight, Mary.... In my mind, I know my MIL will
have to be in a Nursing Home at some point. I realize it will get to the
point where she is going to be too much for us to handle, when it is time
for the pros. Luckily, the home isn't that far from here. Whenever it
happens, at least we'll be able to see her frequently.... This whole thing
is sad. My heart goes out to everyone here.

> The really sad thing, Octavia, is they do reach a point where it
> doesn't matter if they are in their own homes, their daughter's home,
[quoted text clipped - 18 lines]
>
> M
Beth Heimlich - 27 Sep 2005 02:59 GMT
Octavia,  I've experienced the same that Mary describes with my MIL.  We
had her with us for a year and although it worked well in the beginning,
as she deteriorated--our basic routine no longer made sense to her and
she just withdrew from life.  After the emotional trauma(ours, not hers)
of placing her in a dementia-specific ALF-we were stunned at how she
blossomed.  She could do almost what she wanted when she wanted...they
changed her clothes am and pm and got her for meals and showers.  But
otherwise, she could sleep when she wanted or walk around when she
wanted. There was always someone available to interact with-including
men at 3AM!  I feel the setting and some peers made sense to her-even if
she did not know quite where she was.  She no longer recognizes us, but
is content in her familiar world that really expects nothing of her.
Thus, she shines and is fussed over.  If we had kept her in "more
familiar surroundings", she'd have died from apathy long ago.  Each
person has different deficits...and I admit, it's been a long road.  But
you do the best you can with what you have and know.
We feel blessed-that she's readily managed where she is and also that
she has the funds for it.
Best wishes.
Beth
Evelyn Ruut - 27 Sep 2005 04:12 GMT
> Octavia,  I've experienced the same that Mary describes with my MIL.  We
> had her with us for a year and although it worked well in the beginning,
[quoted text clipped - 16 lines]
> Best wishes.
> Beth

That was also our experience.   Although by the time we placed her, she was
unable to do a lot of things, but she did seem to enjoy the routine and the
freedom of the nursing home as much as she could.   If I could do it all
over again, I would have placed her sooner rather than to have imagined that
we were the best of all possible scenarios.    We were both sure she was
happy and comfortable there, at least as much as she could possibly be.
Signature


Best Regards,
Evelyn

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

Camille - 27 Sep 2005 13:19 GMT
This is the same as our experience when we placed my mother in a Alzheimer's
ALF.  It has really been the best decision we have made regarding my
mother's care.

Camille

> Octavia,  I've experienced the same that Mary describes with my MIL.  We
> had her with us for a year and although it worked well in the beginning,
[quoted text clipped - 16 lines]
> Best wishes.
> Beth
Octavia - 30 Sep 2005 17:15 GMT
Thanks so much to each of you who have shared your experiences here about
routine & ALFs:) ~~~Octavia

> This is the same as our experience when we placed my mother in a
> Alzheimer's ALF.  It has really been the best decision we have made
[quoted text clipped - 29 lines]
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