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

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Introduction and help

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Vicki - 02 Aug 2006 06:09 GMT
Hello all!

I've been a lurker in this group for awhile now and decided I needed to
introduce myself and hope to get some advice. I can see that this is a
very supportive group and I'm glad I'm now a part of it. This may end
up being very long. I'm sorry to have you read so much but I feel I'm
nearly in over my head after 4 years.

First a little background. My father passed away in 1986 after being
married to mom for 40 years. He died instantly of a massive heart
attack here at home. Mom has never stopped missing him or wishing he
was still here. I am their only child and adopted. Mom and dad always
had a good marriage but I sense some control issues with mom when I was
younger. After my dad died, it only got worse. She began her attempts
at controlling me and my actions and activities not long after dad
died. Mom and I never really got along as well as I did with my dad. I
know she resents that. When I came home for the funeral, she was too
busy pointing out my dad's faults and insecurities to notice that I was
really hurt. She even went as far as telling me he was seeing another
woman. She did this while at the funeral home awaiting the viewing. I
politely told her that this wasn't the time to discuss this. She
dropped it for awhile but things steadily declined from there.

Fast forward to nearly 4 years ago. I had lost my good job I had in
Ohio and decided to move back home. I talked to mom about it and we
agreed that I would come back home to help her with her life and take
care of her. Little did I know how bad her decline was during the 2
short years I was away. Mom is comfortable financially now but was more
so 2 years ago. She made a really bad financial decision that will cost
her half of her investments. When I got home she immediately started
nagging me about finding a job and "doing my own thing". I repeatedly
explained to her about our deal and started drawing unemployment. This
lasted about 5 months until I had heard enough. I got a part time
morning job and was home a little after 12pm. I came home one day to
see her pulling in the driveway. I followed her in and watched her. She
was definitely acting funny. (She had severe bronchitis about 2 weeks
earlier and they put her on an antibiotic and prednisone.) She got out
of the car and just stared at it and suddenly realized she needed to
close the car door and did. I asked her if she was fine and she said
yes. During this illness, I put her meds on the kitchen table every
morning before I left. We got in the house and I noticed her meds were
gone. Well this was a whole days worth of meds she admitted she'd taken
before 9am. To make this story shorter, she ended up in the hospital
for 5 days. She was finally diagnosed with Sundowners and Steriod
Psycosis. She'd overdosed herself on the Prednisone and it sent her
into the twilight zone literally. At that time, the dr told me that
this episode would affect her short term memory. It may improve over
time or get worse. Well, it's gotten worse, much worse.

I finally got her to agree to see a Geriatrics doctor. We made our appt
and she actually went. I managed to call the dr beforehand and let him
know my concerns with her memory. He or the nurse rather gave her the
memory test and she promptly flunked it. But the dr wouldn't diagnose
her with Alzheimers or Dementia. He diagnosed her with a memory
disfunction and put her on a sample pack of Aricept. That seem to be
helping some and then the muscle cramps started. Cramps are a side
affect and it seemed mom was very prone to having them. She'd had leg
cramps all her life and we were hoping that this wouldn't happen. We
had to take her off of this and have not put her on anything else.

If you are still with me this far, here's the problem. She's sweet as
sugar and nice as can be when we are at the dr. She's really paranoid
when we are not there. She repeats things very frequently and asks the
same questions over and over. She told me she resents me because I
killed my father. I didn't come home the last Christmas before he died
and have never forgiven myself for this. She said that he grieved
himself to death and wanted to write me out of the will and be done
with it. This was in no way the way my father thought about me. I know
this in my heart. She truly believes that I'm living here with her to
take her money, her car, and her possesions away from her. She doesn't
believe I do anything for her and only KEEP her from doing what she
wants. She thinks the montly bills are a ploy to take all of her money.
She complains of being broke all the time but has more money in her
checking account than I make in a year!!  She is on oxygen 16-24 hours
a day (or should be) and has been diagnosed with COPD due to the years
of smoking and Neuropathy. She also has nerve damage in her back and
this is making her feet go numb, burn, hurt, etc. She cannot remember
how to work her portable oxygen tank when we are out. She cannot be in
this heat very long before she is gasping and cannot breathe. Her feet
and legs start getting shaky with a simple grocery run to a very small
store. By the time she gets to the car she can barely breathe or walk.
She will NOT consider that she has a problem. She still thinks she can
go and do what she wants including driving. I will not even go into
here some of the things she has said and accused me of. It's all
ridiculous. I have taken her spare car keys out of her purse without
her knowledge. I cannot get her to quit driving. She doesn't understand
why I want this. If she cannot feel her feet on the petals, she can't
stop in time. If she gets to where she's going, what will she do when
she gets there. She can't work her oxygen tank and can't walk very far
without it. When she's finished, will she remember how to get home??

I don't know what to do about this now. She won't listen to me at all.
I know that they tend to take their frustrations out on the caregiver.
This I understand and I do keep telling myself it's not my mother
talking it's the disease. I think she needs to be in an assisted
facility somewhere. She can't do things alone, will not ask me to do
anything at all, and when I do accuses me of taking over things. Best
of all, she brags about waiting until I leave to do things; such as
picking up limbs in the back yard, washing clothes, or smoking with her
oxygen on. I'm worried for her safety and not sure how to proceed.
Advice would be very helpful.

I do so apologize for the really long letter. I've just had another
round with her tonight. All because I wanted to go on a date.

Thanks for your time!
Vicki
Dennis P. Harris - 02 Aug 2006 07:21 GMT
> She will NOT consider that she has a problem. She still thinks she can
> go and do what she wants including driving.

oh, yeah, been there, done that.  the ignorant doctor should have
reported her to DMV so her license was cancelled.  if not, write
him a letter asking him to do so, reminding him that he could be
held liable for NOT doing so.

then, the important thing:  do you have a durable powers of
attorney, one for her health care decisions, and one for her
business affairs?

remember that your mother can no longer reason.  it's not her
talking, it's her brain injury, because dementias are essentially
brain injuries.  you have to do her reasoning for her, even if
she can't understand.  one thing about the demented and mentally
ill is that they have no insight into their condition --- they
are fine, and everyone else is wrong or crazy.

if you don't think that you can cope with this for long, you
should be looking right now for a nice facility for her.  you
will want to find one that will still take medicaid after her
assets are spent down.

if you don't have POA, you should talk to an eldercare lawyer
about getting guardianship.

if she is having delusions ask her doc to prescribe meds to
control them, and make sure that she actually takes them (my
mother tried all kinds of ways to distract caregivers dispensing
meds).

oh, and get a copy of "the 36 hour day" from a bookstore.
ladylove77 - 02 Aug 2006 23:23 GMT
Vicki, it is typical for your mother to blame you for things and have
everything wrong be your fault.  In her mind, it is true and there is no way
to change her mind because her brain is damaged.  It is so hard to realize
that the disease is speaking, not your mom, especially when she says
something hard and mean to you, and you know you don't deserve it.
My feeling is that you should get her to a different doctor who will take
her problems seriously, not just call them memory problems.  Many dementia
patients can hold things together long enough to fool outsiders who aren't
around them long enough to really see what is going on.  A good doctor
should realize that.  If you can get her to a neurologist, that would be
best.
I agree that you do need durable power of attorney both for health care and
finances.  She could lose more than half her assets unless somebody is
watching carefully.
Stay with us and let us know how things go.
Gwen

>> She will NOT consider that she has a problem. She still thinks she can
>> go and do what she wants including driving.
[quoted text clipped - 29 lines]
>
> oh, and get a copy of "the 36 hour day" from a bookstore.
Vicki - 04 Aug 2006 07:17 GMT
> Many dementia patients can hold things together long enough to fool outsiders who    > aren't around them long enough to really see what is going on.  A good doctor
> should realize that.

Yes I most certainly agree with you on this. She is very good at this
and I think this is why we didn't get a better diagnosis at the doctor.
She wouldn't let me talk to him alone at all. She has slipped now
around several of our closest friends and they not understand what is
happening. It really shocked them how quickly she can "cover it up"
when she gets confused. But now others know and no longer think I was
making this up. She has had a rapid decline over the last month. Having
trouble starting and finishing sentences and completing her thoughts. I
never find things in the place she retrieved them from. I just have to
look for them and then put them back where they've been for years.

Thank you so for your suggestions as well.

Vicki
Vicki - 04 Aug 2006 06:53 GMT
Thank you for replying. I have POA, and Health care surrogate papers
and she has a living will specifying her wishes. I had thought about
writing him a detailed letter explaining everything to him. After
reading your response, I will get started on that letter immediately. I
will include copies of my POA and Surrogate papers so he will have them
on file. If he does not do anything, then we will seek another doctor.

Mom is on Medicare and has a supplement and long term care insurance.
Mom also doesn't want to go to the doctor or take any meds. She's
taking Lasix (sp?) now along with potassium, OTC, and magnesium to help
with leg cramps.

I've been thinking about a facility for her or at the very least having
someone sit with her in the evenings when I work. She is doing too much
after I leave for work. I always try to check on her every evening and
different times and will most always catch her out of breath from doing
something she shouldn't. Now she won't tell me what I caught her doing.
I have to figure it out now since it seems to be a game to her.

I have a copy of the book and have been reading it at night.

Thank you for your suggestions. I am thinking it might be time to see
about a facility for her. She's not going to like it, this I know. But
I understand WHY she won't understand. It's the disease and not my mom.

Thanks again!
Vicki

> > She will NOT consider that she has a problem. She still thinks she can
> > go and do what she wants including driving.
[quoted text clipped - 29 lines]
>
> oh, and get a copy of "the 36 hour day" from a bookstore.
Mary_Gordon@tvo.org - 02 Aug 2006 23:57 GMT
Hi Vicki - next steps...make sure you have powers of attorney in place
for both financial and health care decisions for your mother. Encourage
her to review her will and insurance policies to ensure everything is
up to date.

If you live in the US, see a lawyer specializing in estate law and the
elderly, so you can get advice about medicaid and the rules about
qualifying for long term care etc.

Then....get a new doctor. You need a diagnosis. If her current doctor
won't help, go find someone else who will help. I read up on steroid
pyschosis, and she may well have had it. However, my take on that it is
that it's a red herring. She's also got some sort of progressive
dementia such as Alzheimer's, and you need to be ready for what comes
next - so you need to know what you are dealing with. You should also
try and get a good assessment of her deficits done, so you have a good
picture of how impaired she is.

You really are wanting to hold her accountable for her behaviour at
this point - and I think she's past that stage. You can't keep thinking
of herself as unreasonable, controlling, difficult, paranoid - she's
sick, and I doubt very much she can behave any other way with what her
brain allows her to perceive.

Be insistant - go back to the family doctor and get a referral to a
neurologist or geriatric psychiatrist who has a specialty in dementia.
Put what the other guy said or did behind you - the very fact he put
her on Aricept means he was pretty sure it was AD, and he was
irresponsible not to tell you so. Get someone else who will be straight
with you, and help you line up help. She absolutely must not drive,
which is another reason to get an actual diagnosis.

If you have having trouble coping with her now, you will have to find
placement for her before too long. I know you have the idea that you
will look after her - but it isn't realistic, given how stressful you
are finding this stage - to be completely blunt, it gets worse - much
worse. For your own future and sanity, start thinking about the longer
term. You need to be working, and she will need a sitter/daycare or
placement sooner than later - very shortly, she will need 24/7
monitoriing, supervision and support, and you won't be able to have any
life beyond caregiving if you try to do it yourself.

Mary G.
Vicki - 04 Aug 2006 07:12 GMT
Thank all of you for your suggestions.  I've snipped your comments down
and added mine after yours below:

> Then....get a new doctor. You need a diagnosis. If her current doctor
> won't help, go find someone else who will help. I read up on steroid
[quoted text clipped - 4 lines]
> try and get a good assessment of her deficits done, so you have a good
> picture of how impaired she is.

I'm seeing the decline go faster and faster. She is now not able to
balance her checkbook at all. She can enter things but has trouble
adding and subtracting them now. She can't understand her bank
statement is for last month and not this month. She wouldn't enter her
Soc. Security this month because it wasn't on last month's statement. I
tried to explain but she bit my head off so I just entered it into her
checkbook and left it at that. She is exhibiting the issue of not
dressing properly now. She keeps her A/C on 76  or 78 and wears a
winter coat around the house. She says she's freezing all the time.
Temp yesterday was 105 with the heat index. She's also taken to
mumbling when talking and talking to the "air". She also thinks she
sees dust everywhere and that the house is filfthy. It's not dusty here
and I don't see what she's seeing. She thinks it's bad enough she
wanted to have her carpet cleaned just in her bedroom. I managed to
talk her out of that explaining that it wouldn't be good for her
breathing to have it cleaned.

> You really are wanting to hold her accountable for her behaviour at
> this point - and I think she's past that stage. You can't keep thinking
> of herself as unreasonable, controlling, difficult, paranoid - she's
> sick, and I doubt very much she can behave any other way with what her
> brain allows her to perceive.

You are right but I think it's more the fact that I'm in denial about
her condition. I know she has a problem but this is my mother. She
raised me and took care of me and the rest of her family during their
deaths. She's a strong person and has always been so independent. Thank
you for speaking the truth. I will change my perception of the
situations and be more alert to her moods. She has said that she says
things she doesn't mean. She would have never said mean things to
anyone 5-10 years ago. It was never like her to be this way. I will try
hard to remember this too!

> Be insistant - go back to the family doctor and get a referral to a
> neurologist or geriatric psychiatrist who has a specialty in dementia.
[quoted text clipped - 3 lines]
> with you, and help you line up help. She absolutely must not drive,
> which is another reason to get an actual diagnosis.

I will makes some calls when I'm out of the house and see what is
offered around the area.

> If you have having trouble coping with her now, you will have to find
> placement for her before too long. I know you have the idea that you
[quoted text clipped - 5 lines]
> monitoriing, supervision and support, and you won't be able to have any
> life beyond caregiving if you try to do it yourself.

It's not so much coping with it and worried what she will try while I'm
at work. I did think I would look after her until the end. But I had
not planned on Alzheimers or Dementia taking over. I do agree with you,
it's not realistic for me to try to take care of her. There is only 3
of us left now. Myself, my son and my mom. My son is 19, soon to be 20.
He has his friends and his life and I will not take that from him. I am
41 years old with nobody else but those two. I cannot be her full time
caregiver and there will never be anytime to sleep or have any down
time. Over the last few months, my spare time (days off from work) have
been consumed with dr visits and driving her to her appts. I can't do
this full time and work full time as well. I know this, but I just have
to keep reminding myself.

I will keep everyone updated on the progress. Thanks again for your
help.
Vicki
Evelyn Ruut - 04 Aug 2006 12:57 GMT
Vicki,

You have gotten some very good advice, but I wanted to point out (coming in
late to this thread) that if your doctor is not treating her properly, he
may also not have done sufficient diagnostic testing.  The scary thing is
that there ARE other causes of dementia that are not Alzheimers, and some of
them are actually reversible, such as NPH.   Sometimes the person is having
mini-strokes too, which would account for a sudden decline.

I just wanted to say that I feel deeply sorry for your situation, and
remember well how it was when my mother in law, formerly a strong
independent woman, began acting strangely.   Others were in denial about
what we definitely realized were not normal things, thinking her "bad kids
wanted to put the old lady away" when nothing could have been further from
the truth.   Ultimately we took her to live with us and cared for her for a
few years till her illness advanced to where skilled nursing care was
needed.   She died a year ago last April.

So I have been down that road and all of us here have as well.   There is a
website associated with this newsgroup, and I think it is still functional.
Lots of your questions can be answered there.   You might want to bookmark
it and read there for a while.   It is really a wonderful resource.

http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm

Signature

Best Regards,

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

> Thank all of you for your suggestions.  I've snipped your comments down
> and added mine after yours below:
[quoted text clipped - 78 lines]
> help.
> Vicki
Mary_Gordon@tvo.org - 04 Aug 2006 16:12 GMT
Vicki, as Evelyn has pointed out, there ARE a number of causes of
dementia. Dementia is just a term that describes the symptoms of
cognitive decline, memory loss, personality changes, etc.
So, it isn't helpful when a doctor says the person has dementia, since
you can see that for yourself! Saying a person has dementia is like
saying they have a fever - what you want to know is the underlying
CAUSE of the dementia - which could be Alzheimer's, strokes, and a
zillion other things, some of them treatable.

No matter what the cause is, I think you might be helped by reading a
book called the 36 Hour Day, by Mace and Rabin, published by Warner.
Its in paperback, its not expensive, and you can get it from Amazon or
most large bookstores. I think everyone here is in agreement, if you
only buy one book, this is the one, in terms of helping a caregiver.
Very useful information. I had quite a few books when my MIL was
sliding, and this is the one I wore out because it offered the best
information on dealing with behaviors.

Mary
Karla - 05 Aug 2006 18:15 GMT
Vicki - Welcome to the group and as you can see, you came to the right
place! Although I have not posted often (which I know everyone
understands due to the time-consuming nature of dealing with a person
with Alzheimers and all of the ramifications thereof), I also
discovered this group this summer.

To make a long story short, my 84 y/o father has been declining over
the past several years, but in the past few months exhibited such
difficult behaviors (frequent angry outbursts, refusual to acknowledge
limitations with activities such as driving, banking, etc., delusions,
paranoia, etc etc etc) that my mother felt she could no longer deal
with him at home even with help. After an extensive evaluation thru the
Veteran's Administration, he was diagnosed with mid-stage Alzheimer's
and the doctors and social workers recommended immediate placement
following a two-week hospitalization in the psychiatric ICU. The whole
process of getting him evaluated and placed plus all the legal
manuevers (protecting assets and obtaining a legal
guardianship/conservatorship) has been draining. And I'm in the process
of starting a new job/life in a city 100 miles away after 6 years in
graduate school. (I just received my Ph.D. at age 51 and am going to my
first tenure-track professorship at a private college).

The stress has been heavy, but not unbearable, due in part to
tremendous support from family, friends, information online (including
this group) and thru books (yes, the 36 hour day is a must-read), a
local Alzheimer's support group, and wonderful, caring staff in the
facility where we placed him. Dad likes much about the facility (the
food, people, etc.), but our visits always trigger his desire to go
home and he can get very nasty when told he can't go home "yet." This
makes visiting very hard, in addition to the fact that the nursing home
is nearly an hour from where my mom lives and 2 hours from where i live
(she doesn't drive).

Yes, Vicki, count yourself lucky that you've found such a good online
support group. I read the messages almost daily, although I
infrequently have time/energy to post. You are right, caring for your
mom in your home would be effectively denying yourself a life to which
you are entitled. If it is any consolation, we've found that dad
actually behaves better and cooperates with the nursing home staff
better than he did with us. They are experts at what they do - and the
care workers can go home after their shift  - which home caregivers
can't do. So placing the loved one in a facility is often better for
them as well! Thank god for such wonderful places and the compassionate
people who make the care of our loved ones their life's work!

Hang in there,

Karla
Vicki - 05 Aug 2006 18:45 GMT
Well today it's much worse. She wasn't able to remember the year her
husband died and the year her grandson was born. They were both the
same year. She was extremely agitated over a bill she didn't pay. It
was due yet but she felt she was late. I got her calmed down and told
her I would drop it in the night drop at the utility company. She seem
content with that for now. She is still suspicious of the month bills.
She insists they are trying to take all her money. I think it may be
time for me to start handling more of her finances.

Thanks for listening!
Vicki
Mary_Gordon@tvo.org - 07 Aug 2006 02:19 GMT
Vicki,

Quite often the cause of the number problems you will see is a loss of
understanding of sequences. They no longer get the order of numbers,
channels on a dial, days of the week, months of the year etc. So, the
idea that three comes before four or after two, or that seven is a
bigger number than six - just gone entirely. When you don't understand
sequences at all, you can't add or subtract since you don't "get" the
idea of bigger or smaller numbers in a sequence, you can't understand
how to find the right channel on your TV, you can't read a calendar, OR
tell time.

You can demonstrate this with your mother quite easily. Tell her today
is Sunday and ask her what day of the week tomorrow will be - or if its
August, what month was last month. Get a calendar out, and ask her to
show you today - or show her where we are on the calendar and ask her
to show you same day next week, or three days from now. I bet she won't
be able to do it. My mother in law couldn't tell time at all - and even
if she could read the dial, it didn't make sense to her, since she had
no idea if it was 2 o'clock, it was an hour until 3 o'clock, never mind
any "feel" for how long an hour was.

Another thing you will encounter is the gap between being able to read,
and being able to understand what is read. This is why reminder notes
don't work. It isn't about memory problems - the skills involved in
reading comprehension are different than actually just translating the
text into sounds. This is another one you can demonstrate for yourself
by asking your mother to read some text out loud - dollars to donuts
she'll be able to do it - but then ask her to do what it says (i.e.
give her text that says something like "Take the red hat off the table
and put it on your head, then take the blue book from the table and put
it on top of the fridge." I'll bet she won't be able to follow the
instructions - because she can't comprehend what she has read.

M
Dennis P. Harris - 17 Aug 2006 05:31 GMT
> She seem
> content with that for now. She is still suspicious of the month bills.
> She insists they are trying to take all her money. I think it may be
> time for me to start handling more of her finances.

if you have signature authority on her bank account, you should
consider renting a post office box and have all her bills and
bank statements diverted to there, a few every month, starting
with the ones she most objects to.

i know what you mean --- my great aunt in her 90s would refuse to
pay her paperboy, saying the paper never had any news that month!

she also didn't want to pay her gas bill, saying that she never
used the stove or the furnace (which she kept cranked way up
because like many folks that old, she felt cold all the time).
at age 97, she had $250k in the bank and a long paid for house,
but she still wouldn't buy chicken breasts because they were "too
expensive".

my mother just had the bills sent to her, and paid them.  she
didn't notice when the bills didn't arrive, and they no longer
got her upset.  pretty soon, my mom was paying everything and my
great aunt forgot that she ever got any bills.
 
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