New to the board & disease - clueless how to deal with it

[Guest guest]

Hi all,

First of all I am so glad I found this forum. I haven't had a chance

to read many posts (still shell shocked and depressed at the news I

got about my mother's diagnosis yesterday) but it is so heartening to

hear your stories and know that you're getting through this. I am so

overwhelmed at this point that any little bit of hope is literally a

lifeline for me. My heart also goes out to all of you dealing with

this. This is such a horrendous disease both for the person who has it

but almost more so for us who have to deal with its effects.

Especially when we see them at their worst but most others see them

when they're in their " doing perfectly fine " periods.

I'm all that my mother has. I have no siblings and all her siblings

are either dead (4 died from dementia, most likely LBD) and of the 3

remaining alive 2 have dementia with the youngest not showing any

signs (yet). Needless to say I'm doing my damndest to not think about

how such a strong family pattern for dementia might affect my future

health. I don't have any other family for support. I moved in with her

and put my life on hold to help her out after my father was killed in

a car accident and then she started showing dementia signs so I'm

still here and definitely won't be leaving now.

Is anyone else in this situation where they're having to do this all

on their own? Mom's just starting to show signs of behaviour changes

and she fluctuates on her cognition levels (she's still mostly on top

of things which is where I want to keep her for as long as possible).

But her paranoia and aggressive/nasty side is becoming more pronounced

and I'm at a lost at how to deal with it especially when she's in full

denial that she has any problem at all. All the doctors who have

diagnosed her with a problem are wrong according to her. I've poisoned

their minds including the latest neurologist up at s Hopkins who's

tops in his field. She's got it stuck in her mind that everyone should

just leave her alone. That they're all out to get her (with me being

at the top of the list because I won't let her not go to the doctors).

We're going to be starting her on Namenda on Mon. along with her 6mg 2

times a day of Exelon and 50 mg of Zoloft. He says it might help with

her behavior (tho he told her it was to help stop her bowel problems

caused by the Exelon). My cousin said tho that when she had her mother

on Namenda, it made her worse on the confusion. Has anyone found

anything that's helped with the paranoia and aggressiveness?

I know I also need to start getting all the legal stuff in place but I

haven't a clue how to go about it. I'm listed for legal power of

attorney for health but I don't know if that kicks in at this point or

not since she's still so high functioning congitively. Anyone have

experiences with that that might help me start sorting this mess out?

Lastly, does anyone have any suggestions/solutions on how I can keep

my health and sanity? I'm having to deal with my own problems of a

failed spinal fusion in my neck and my reserves are pretty low due to

the pain and lack of sleep. I need to find solutions so I have some

control over this chaos. My business and my pets are depending on me

too. I have to keep it together mentally and physically for all of

them. Anyone have any tips on what I can do to find the strength and

assistance for the problems that I'm now faced with? Y'all are all *I*

have to get us through this. I really need the help. Please. Thank you

for anything you can tell me on how to keep myself from totally

burning out.

[Guest guest]

Hugs to . Hate that you have a need to be part of this group,

but welcome.

Call the neurologist who gave the LBD diagnosis -- what does he/she

recommend for paranoia/aggression. Seroquel works for many, but not

for my Dad. He is on clozural, which his geriatric psychiatrist

says is the gold standard, but it comes with a very low, but very

serious risk to white blood cells. This has worked very well for

Dad. (You may also want to get an appt w/ a geri psychiatrist --

they can have waiting lists, but maybe your neurologist can pull

strings.)

Then get an appointment w/ a social worker who specializes in

geriatrics -- perhaps at s Hopkins? You can also call your

local Area Agency on Aging for advice.

THese are some of the things you need to ask.

-- what support systems are available to you? At what costs?

-- YOur question of POA for medical. Also, you need a POA for

financial.

-- Get to know your mom's financial status. Meet with a financial

advisor/CPA who specializes in seniors (there is a certification

they can get).

--You may want to meet w/ atty who specializes in seniors too.

-- When you know mom's financial status, determine how much support

you can afford. (We made decision to put Dad in a very nice

assisted living that's very close to me. His money SHOULD last

beyond his life expectancy, but if it doesn't, he will likely need

nursing home at that time, and we'll let Medicaid take care of it

then.)

--Get the support in place soon. Your health obviously cannot take

too much of this, and I'm sorry to say, but it will only get more

trying.

-- Maybe talking w/ Alzheimer's Assn can help you find ways to get

your mom to accept her disease. They should have support groups for

both you and for her.

These are my thoughts for now. Hope you find it helpful.

Lori

Detroit

> Hi all,

>

> First of all I am so glad I found this forum. I haven't had a

chance

> to read many posts (still shell shocked and depressed at the news I

> got about my mother's diagnosis yesterday) but it is so heartening

to

> hear your stories and know that you're getting through this. I am

so

> overwhelmed at this point that any little bit of hope is literally

a

> lifeline for me. My heart also goes out to all of you dealing with

> this. This is such a horrendous disease both for the person who

has it

> but almost more so for us who have to deal with its effects.

> Especially when we see them at their worst but most others see them

> when they're in their " doing perfectly fine " periods.

>

> I'm all that my mother has. I have no siblings and all her siblings

> are either dead (4 died from dementia, most likely LBD) and of the

3

> remaining alive 2 have dementia with the youngest not showing any

> signs (yet). Needless to say I'm doing my damndest to not think

about

> how such a strong family pattern for dementia might affect my

future

> health. I don't have any other family for support. I moved in with

her

> and put my life on hold to help her out after my father was killed

in

> a car accident and then she started showing dementia signs so I'm

> still here and definitely won't be leaving now.

>

> Is anyone else in this situation where they're having to do this

all

> on their own? Mom's just starting to show signs of behaviour

changes

> and she fluctuates on her cognition levels (she's still mostly on

top

> of things which is where I want to keep her for as long as

possible).

> But her paranoia and aggressive/nasty side is becoming more

pronounced

> and I'm at a lost at how to deal with it especially when she's in

full

> denial that she has any problem at all. All the doctors who have

> diagnosed her with a problem are wrong according to her. I've

poisoned

> their minds including the latest neurologist up at s Hopkins

who's

> tops in his field. She's got it stuck in her mind that everyone

should

> just leave her alone. That they're all out to get her (with me

being

> at the top of the list because I won't let her not go to the

doctors).

>

> We're going to be starting her on Namenda on Mon. along with her

6mg 2

> times a day of Exelon and 50 mg of Zoloft. He says it might help

with

> her behavior (tho he told her it was to help stop her bowel

problems

> caused by the Exelon). My cousin said tho that when she had her

mother

> on Namenda, it made her worse on the confusion. Has anyone found

> anything that's helped with the paranoia and aggressiveness?

>

> I know I also need to start getting all the legal stuff in place

but I

> haven't a clue how to go about it. I'm listed for legal power of

> attorney for health but I don't know if that kicks in at this

point or

> not since she's still so high functioning congitively. Anyone have

> experiences with that that might help me start sorting this mess

out?

>

> Lastly, does anyone have any suggestions/solutions on how I can

keep

> my health and sanity? I'm having to deal with my own problems of a

> failed spinal fusion in my neck and my reserves are pretty low due

to

> the pain and lack of sleep. I need to find solutions so I have some

> control over this chaos. My business and my pets are depending on

me

> too. I have to keep it together mentally and physically for all of

> them. Anyone have any tips on what I can do to find the strength

and

> assistance for the problems that I'm now faced with? Y'all are all

*I*

> have to get us through this. I really need the help. Please. Thank

you

> for anything you can tell me on how to keep myself from totally

> burning out.

>

>