Re: Frustrated, tired, depressed and upset.

[Guest guest]

kerry,

i can complete understand what you are going thru, as my dad and i had a lot of

battles. and you just have to pick and chose your battles. if it is about his

saf=ey fight the fight if it really doesnt matter than let it go.

my dad was 6'4 and in the begining about 220 lbs. so wrestling with him wasnt

good, adn i have a 10 lb weight restriciyton which made it tough too

so how we won our battles was give dad choices either way i would win n teh

choice but he felt like he had a choice.

for ex, dad, do you want me help you to the bathroom now or after you finish

your drink.

or dad , do you want donnie to help you shower, before or after lunch.

either way i woudlget what i wanted us helping him but he would have a choice,

you have to reason with him like you would a toddler, yes even blackmail.

dad, do you want some cookies, ok first let me help you to the bathroom.

i hope some of these ideas help, hugs, sharon m

---- kerry1897 wrote:

My father was diagnosed with LBD Apr'06, and we moved him here to

live with us in June. He had terrible hallucinations, and is on 1/2

of .25 mg tablet Seroquel at night, which really helps.

Physically he's OK. He can walk, shower, feed himself, etc. He's

always been thin, and he certainly has lost a lot of strength, but no

more than would be expected of an 83 yr old.

Sometimes when he needs help and I offer it he completely refuses. I

understand he doesn't want to lose control, but I just want to keep

him safe and organised. We've had arguments, where he just keeps

insisting, sets his mouth and lifts his chin. I know you say there's

no point in arguing, but when it comes to his safety and well-being,

what can I do?

My husband says let him do it his own way and he'll learn, but that's

not the case. Packing a bag (he visits a lady friend every 6 weeks or

so) and doing his banking are the usual sore points. He'll let me

help him pack a bag - I'll lay everything on the bed, asking his

approval of each item, then put it in the bag the night before. The

next day, he'll come out of his room with a bag he's packed himself,

and won't let me check to see he's got everything, or, he'll unpack

the original bag and re-pack it with too much of one item, and none

of another. So far he's forgotten cellphone, underwear, socks, jeans

and coats on his trips.

He walks around with a minimum of $500 in his wallet, but pays for

everything with his Visa. Then he keeps all the receipts because he

wants to 'balance' them. He used to be an accountant. He admits he

can't balance anything and can't add up. The other day he looked at

his accounts on-line (yes, he can still do that!) and freaked out

because his balance was low. He was looking at the account number,

and thought it was his balance. He can't handle the bank machine, but

insists on doing it himself, which usually leads to mistakes, or

forgetting his card.

He has all his medications in a container, and I know he forgets to

take them sometimes, but he won't let me help him with that, either.

I don't mind helping, I want to help, but when he argues and insists,

I don't know what to do. Sometimes I'm so angry I have to leave the

house for a walk to cool down.

I know he is in a much better condition than a lot of people here,

but it's wearing me out, and not doing much for my marriage, either.

If I had known what it was going to be like, I would never have

suggested he live with us. There - I've said it, and now I feel

guilty. Where do all you caregivers get your strength from?

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

Kerry 1897, I don't know your name. So I used part of your ID. Sorry.

You have your father, and you are still his little girl to him. I have my

husband and sometimes I believe he thinks I am a babbling idiot. Yesterday, he

left me bawling while trying to drive the car. None of us are perfect, and

although we love and care with all our hearts, we have our moments of breaking.

You have heard that caregivers have more health problems than the patient,

well, now you know why, and that many marriages are strained to the breaking

point. Now you know why there, also. Do not let those things happen.

My suggestion is as your husband suggested, and let your father find out for

himself, and ask for help. Let the chips fall where they may, unless he is

in real danger to himself or someone else. He may feel as if you are

smothering him, and it makes him feel unable to cope, he wants to hang onto

coping by

himself. And, he is fighting his lack of independence. He may not care to be

organized, and find it constricting, so just let things go that can be let

go.

You may want to buy another bag that looks just like the one he has, and do

a switcheroo when he packs his. Find a reason to have his attention diverted,

and do a switch. But, be sure to keep the well packed bag in a hidden place

all ready and waiting. When he is leaving, find a way to switch.

My MIL had the biggest mess you ever saw, and I left it alone. All those

bags were her private world. You wouldn't believe the mess in them. Dirty, very

soiled night gowns, and street clothes, all wadded in every bag as full as

could possibly be. There were all kind of little treasures mixed with her dirty

clothes. I asked if I could wash her clothes, and she became very defensive

about them. So, wear them! It doesn't hurt me. When something is left laying

I would wash it. And eventually I found ways to get around her. As I said

above.

Confronting him will not help as you well know, but playing a few games of

which he is unaware will keep the peace.

Imogene

In a message dated 9/3/2006 1:59:30 PM Central Daylight Time,

kerry1897@... writes:

My father was diagnosed with LBD Apr'06, and we moved him here to

live with us in June. He had terrible hallucinations, and is on 1/2

of .25 mg tablet Seroquel at night, which really helps.

Physically he's OK. He can walk, shower, feed himself, etc. He's

always been thin, and he certainly has lost a lot of strength, but no

more than would be expected of an 83 yr old.

Sometimes when he needs help and I offer it he completely refuses. I

understand he doesn't want to lose control, but I just want to keep

him safe and organised. We've had arguments, where he just keeps

insisting, sets his mouth and lifts his chin. I know you say there's

no point in arguing, but when it comes to his safety and well-being,

what can I do?

My husband says let him do it his own way and he'll learn, but that's

not the case. Packing a bag (he visits a lady friend every 6 weeks or

so) and doing his banking are the usual sore points. He'll let me

help him pack a bag - I'll lay everything on the bed, asking his

approval of each item, then put it in the bag the night before. The

next day, he'll come out of his room with a bag he's packed himself,

and won't let me check to see he's got everything, or, he'll unpack

the original bag and re-pack it with too much of one item, and none

of another. So far he's forgotten cellphone, underwear, socks, jeans

and coats on his trips.

He walks around with a minimum of $500 in his wallet, but pays for

everything with his Visa. Then he keeps all the receipts because he

wants to 'balance' them. He used to be an accountant. He admits he

can't balance anything and can't add up. The other day he looked at

his accounts on-line (yes, he can still do that!) and freaked out

because his balance was low. He was looking at the account number,

and thought it was his balance. He can't handle the bank machine, but

insists on doing it himself, which usually leads to mistakes, or

forgetting his card.

He has all his medications in a container, and I know he forgets to

take them sometimes, but he won't let me help him with that, either.

I don't mind helping, I want to help, but when he argues and insists,

I don't know what to do. Sometimes I'm so angry I have to leave the

house for a walk to cool down.

I know he is in a much better condition than a lot of people here,

but it's wearing me out, and not doing much for my marriage, either.

If I had known what it was going to be like, I would never have

suggested he live with us. There - I've said it, and now I feel

guilty. Where do all you caregivers get your strength from?

[Guest guest]

Kerry -- I wish I had more advice for you -- my mom is in a nursing

home. I truly don't know how the caregivers on this board does it. My

mother had difficulties in the beginning when she was still on her own,

but luckily she asked for help -- I don't know what I would have done

had she not wanted the help. It was difficult enough taking her away

from her home, her dog, her life even with her knowing that she

needed/wanted the help, I don't know how you're doing it with an

unwilling participant. Just know that I feel for you and YOU'RE DOING A

GREAT JOB! But, you have to think of yourself too. You have to have

some " me time " or you'll wear yourself out. Then noone will be able to

help your dad. And when/if the time comes that you can't handle things -

don't feel guilty having him go to an assisted living / nursing home.

I know my mom is much better off where she is than if either me or my

sister cared for her. She's getting lots of TLC where she is.

[Guest guest]

Kerry,

I don't have any words of wisdom for you, but I do understand what you are going

through. We were able to keep Dad home until he passed away Dec. 05. He went

through a time just like you are talking about. Fortunately for us, my mother

was still alive, so we were able to trade off caregiving and dealing with Dad's

behaviors.

We hired a caregiver 5 hours a day. Dad was not about to admit he needed any

help, so we convinced him that the caregiver was to help out Mama (with her

consent and collusion). I handled the financial side while Mama and the

caregiver dealt with the rest. We live in a small town, so all of Dad's doctors

knew me. We were able to get them to tell him things that he wouldn't take from

us.

Dad went through a period were he accused everyone (including Mama) of stealing

from him. On more than one occasion, he threatened to call the police, but we

were able to convince him not to. The only fallout from this period was that my

son (who was 15 at the time and is high functioning autistic) became scared of

his grandfather and refused to be around him when I wasn't present.

As time went on, Dad's delusions became more creative and less tied to reality.

I captured several of these in a blog http://lifewithdad.blogspot.com/ . The

blog says " Alzheimer's " rather than LBD because that was the diagnosis we had at

the time I started posting. We never got a formal LBD dx, but Dad's progression

fit LBD better than any other of the dementias. My last post is November 28,

2005. Dad passed away on December 2, 2005.

My mother had a hard time dealing with all of these delusions. She never

understood that they were a part of the disease and that Dad wasn't lying. We

had to teach her to laugh at what he said rather than argue with him.

Margee

--

LO--Dad

Passed away 12-2-05

[Guest guest]

Thank you all for your advice. I will try to be less concerned with the

unimportant things, and concentrate on the meds and money situation. Dad gave me

POA last October, quite voluntarily. Maybe now is the time to invoke it.

I am also going to try a daily walk (for me) while the weather is good, just

to relax.

I read this board every day, and am learning so much.

---------------------------------

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[Guest guest]

Hi,

Just a note about financial POA.

When my dad signed his POA, the lawyer told us to go ahead to the

bank and get it on file. So the two of us went and set it up at the

bank without incident, even though I did not use it right away (I

just helped him).

Recently, I sent a copy of this POA (only signed about 1 1/2 years

ago to get one of his addresses changed for a stock he owned. They

wouldn't accept it..said it had to be signed within the last 6

months. I consulted with a laywer who advised me that in Fla, POA

are not limited by time, but none the less it was a hassle dealing

with the transfer agent. I ended up just getting my father to sign

the change of address form, but I was surprised that the POA was not

accepted but glad he could still sign his name.

So I would suggest that you and your father have the power

established at the bank or whereever, even though you may not

actually use it there for a while.

Also, regarding the medicines:

For many years my father was aided by a " spreadsheet " that I set up

that listed his medicines down the side and the day of the month

along the top. I had them grouped by time of day that he took them

(am, afternoon & bed). He would put a check in the box when he took

each pill. This worked for a couple of years, then he would forget

to check them off, etc. After that we went to the pill boxes, which

I would set up for him. If the pills were still there...they hadn't

been taken. This way he didn't have to deal with the bottles.

Getting away for a walk is a great idea and if you can squeeze a

funny movie in somewhere, a laugh is good for the soul. Wishing you

the best.

Daughter of Bill, 91

>

> Thank you all for your advice. I will try to be less concerned

with the unimportant things, and concentrate on the meds and money

situation. Dad gave me POA last October, quite voluntarily. Maybe

now is the time to invoke it.

> I am also going to try a daily walk (for me) while the weather

is good, just to relax.

> I read this board every day, and am learning so much.

>

>

> ---------------------------------

> The best gets better. See why everyone is raving about the All-new

Yahoo! Mail.

>

>

[Guest guest]

kerry,

please feel free to vent here, this is a great outlet for you as well as a great

place to learn alot, we have many people here taht have lost their loved ones,

that continue to post to help others, and then there are many that are somewhere

along the roller coaster ride of lbd. please be sure to ask about anthing that

concerns you becxuase i am sure it will be on teh mind of someone else as well.

no topic is ever taboo.

i think you are right to begin to invoke POA, although it will be tough for him

to accept it and yes he will get very ugly and angry at you but try hard to

remember taht it si the lbd dad that is angry not your dad. you have to try to

understand that he is 2 differnt people now, your dad who you will probably

enventaully lose him totally. as the lbd dad will come out. it was very tough

with my dad, his lbd side hated me, hated me as much as my dad loved me so

anytime something was wrong it was alwyas my fault. he even tried to become my

pimp. and that hurt to teh core. you may slowly want to begin to take care of

financial business if you havent already because his lbd mind will do things he

wouldnt do in the past. janet colello's husband destroyed alot of legal

paperwork before she realized it and that was a heartache for her.

you may start with something as simple as here let me put the stamps on those

envelops for you tah way you can be sure the bills are being paid properly. it

is terrible thing to do, but you may save yourself some major heart and legal

aches later.

good luck and hugs, sharon m

---- Sharman Minus wrote:

Thank you all for your advice. I will try to be less concerned with the

unimportant things, and concentrate on the meds and money situation. Dad gave me

POA last October, quite voluntarily. Maybe now is the time to invoke it.

I am also going to try a daily walk (for me) while the weather is good, just

to relax.

I read this board every day, and am learning so much.

---------------------------------

The best gets better. See why everyone is raving about the All-new Yahoo! Mail.

[Guest guest]

I just read some of Margee's blog, and laughed out loud. She makes a nerve

twanging, repetetive behavior sound funny!

My Dad watches a lot of TV, especially sport. We are waiting for the hockey

season to start, as that is his favorite sport. When it comes to sport, he never

forgets anything. He can recount a recent game with all the right plays and

Russian player's names, faultlessly. But ask him to tell you what happened

yesterday and he won't have a clue. It seems if it isn't something he really

likes, he just doesn't make the effort to pay attention. He used to be like this

before LBD, but now it's worse.

In fact, I find a lot of his behaviors similar to what he was like before, but

exagerrated. For instance, it was a family joke that Dad could never find

anything, even if it was staring him in the face, and this is still true. It was

the time he went into the ensuite off his bedroom, came out and asked where the

toilet was that really floored me. This is not a large room, and nothing is

hidden away.

That was the first time he came to visit us by himself, after my Mum died in

2000. They had been here before, and stayed in that room. Looking back, I see a

lot of hints towards LBD. It was at that time he told me about seeing 'ghosts'

at night.

Can he have a mild version of LBD for the past 5-6 years, and only need

medical help now? Why would it suddenly take a turn for the worse?

Kerry1897

---------------------------------

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[Guest guest]

kerry,

hello again,

you asked if someone could have a mild version of lbd, i think the ansewr would

be yes, they can have it for years before anyone diangoses it, and many times

our loved ones would be accused of 'faking it' my dad tried for 5 years to get

his disease diagosed, they did tons of mris' on his, nothing abnormal detected,

he had many physicals, noone could explain his falls, adn his hallucintaions,

it wasnt until 5 yrears after that did the parkinson symptroms set in and then

he as diagnosed by a weekend on call doctor not even our own physicians. but

looking back now, i can see dad had the disease since at least yearly 1990;s .

lbd ers can be accused of faking it, becuase they do 'showtinme' where for a

while like a friends visit, doctor appt phone call, etc, can be perfrectly

normal but then the situation return to normal and the light switch goes back

off.

as what could have triggered the worsening, did he have surgery, or anesthesia?

did something happen extremely stressful?? did he get sicka nd take some

medicines, there are so many things taht can trigger it, and then there are so

many unknown reasons too. so it is hard to say, good luck and hugs, sharon m

---- Sharman Minus wrote:

I just read some of Margee's blog, and laughed out loud. She makes a nerve

twanging, repetetive behavior sound funny!

My Dad watches a lot of TV, especially sport. We are waiting for the hockey

season to start, as that is his favorite sport. When it comes to sport, he never

forgets anything. He can recount a recent game with all the right plays and

Russian player's names, faultlessly. But ask him to tell you what happened

yesterday and he won't have a clue. It seems if it isn't something he really

likes, he just doesn't make the effort to pay attention. He used to be like this

before LBD, but now it's worse.

In fact, I find a lot of his behaviors similar to what he was like before, but

exagerrated. For instance, it was a family joke that Dad could never find

anything, even if it was staring him in the face, and this is still true. It was

the time he went into the ensuite off his bedroom, came out and asked where the

toilet was that really floored me. This is not a large room, and nothing is

hidden away.

That was the first time he came to visit us by himself, after my Mum died in

2000. They had been here before, and stayed in that room. Looking back, I see a

lot of hints towards LBD. It was at that time he told me about seeing 'ghosts'

at night.

Can he have a mild version of LBD for the past 5-6 years, and only need

medical help now? Why would it suddenly take a turn for the worse?

Kerry1897

---------------------------------

All new Yahoo! Mail -

---------------------------------

Get a sneak peak at messages with a handy reading pane.

[Guest guest]

I concur that LBD can be mild for years without anyone picking up on the

problem.

I know now that my LO had it since 1995, or even 1994, after that big open

heart surgery. It was just little things, that happened. Not being able to

use numbers at work, which he did all day long for years. And, he couldn't use

the check book.

Then in 2005 he couldn't figure out how to install a light fixture. He

worked with electricity for years, for goodness sakes! He asked for my help,

and

it took us a week, because of the heat, and our health. I started keeping a

few notes. There were other situations like that, but the clincher was when he

saw a leopard in our hall, and he was wide awake.

That is when I talked with him calmly and lovingly one evening while we had

a glass of wine. To make my point that he needed to see a doctor, I showed

him my notes. He saw the doctor, but was diagnosed with Alzheimer's. This year

he was diagnosed with LBD.

So for my darling husband it has been eleven years. I can name the things

that occurred that point to LBD, all those years ago.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 9/4/2006 7:59:00 PM Central Daylight Time,

margee20@... writes:

---- Sharman Minus <_kerry1897@..._ (mailto:kerry1897@...) > wrote:

<snip>

Can he have a mild version of LBD for the past 5-6 years, and only need

medical help now? Why would it suddenly take a turn for the worse?

Kerry1897

<snip>

To answer your question if there is such a thing as mild LBD:

Yes, I think my Dad had a mild version of LBD for at least 5 years before

any " real " dementia showed up. If you had a chance to read my too long post Re:

Your Dad's Passing, you can see that I first saw signs in my Dad in

1992--only because I knew him so well and getting lost was so not like him. It

was 5

years before there were enough symptoms to get a diagnosis of anything.

Margee

[Guest guest]

Hi Kerry - I'm writing to encourage you a bit in your struggles w/ your dad,

since I am also caring for my 80 yr old father w/ LBD (though he is in his own

home, not mine). As important as keeping them safe is, I sometimes end up

letting Dad 'do it his way' -- like not insisting on the oxygen this weekend.

Then last night he ended up so weak he couldn't get out of bed for dinner, and

asked me to call the Dr. Ended up improving SO MUCH after 2 hrs. on the oxygen

and I felt so guilty that he wouldn't have gotten so bad if I had insisted

sooner he put it on. He was unhappy about having to wear it today. " Yesterday I

was just tired " was his comment; as if he didn't remember being so weak and

asking me to call the Dr.! Maybe it will help him know how important the oxygen

is -- but more than likely, he'll continue to hate using it and take it off

whenever no one is around to insist. Same kind of issues w/ him using the walker

-- he is too proud to use it 90% of the time -- esp.

if I say he should. I wish I had suggestions re: the $ issues -- thankfully Dad

asked me to take that over a couple years ago. Now he looks for his money clip,

then says he " never buys anything anyway, so why worry about it? " (he isn't

driving, thankfully) But if he can't find $ handy, he frets.

Where do others get the strength to care for LO's? My strength comes from God,

and he has given me the desire to make these times about DAD and not about ME.

There are so many big things connected w/ his health that I can't fix, but so

many little things that make him happy, which are not that hard to do. I try to

focus on those, and pray for wisdom on dealing w/ the big issues and where/when

to go to battle over an issue. It's got to be so hard to be losing yourself

(which is what I think Dad feels he's doing) that any little things I can do to

give him joy is worth it.

I'm rambling, I know -- but wanted to tell you to keep on with the little

things, and try not to force your Dad to do things your way. He may come to ask

for more help when he feels you aren't smothering him (as my Dad says so often).

Hugs, Susie1

Susie1 - thankful for each good day w/ 80 yr old Dad (dx probable LBD June 06;

dx PD Aug 05; still lives alone)

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small

Business.

[Guest guest]

---- Sharman Minus wrote:

<snip>

Can he have a mild version of LBD for the past 5-6 years, and only need

medical help now? Why would it suddenly take a turn for the worse?

Kerry1897

<snip>

To answer your question if there is such a thing as mild LBD:

Yes, I think my Dad had a mild version of LBD for at least 5 years before any

" real " dementia showed up. If you had a chance to read my too long post Re:

Your Dad's Passing, you can see that I first saw signs in my Dad in 1992--only

because I knew him so well and getting lost was so not like him. It was 5 years

before there were enough symptoms to get a diagnosis of anything.

Margee

[Guest guest]

Margee: Did you have an autopsy done on your father

so you knew if he had LBD?

--- Margee wrote:

> Kerry,

>

> I don't have any words of wisdom for you, but I do

> understand what you are going through. We were able

> to keep Dad home until he passed away Dec. 05. He

> went through a time just like you are talking about.

> Fortunately for us, my mother was still alive, so

> we were able to trade off caregiving and dealing

> with Dad's behaviors.

>

> We hired a caregiver 5 hours a day. Dad was not

> about to admit he needed any help, so we convinced

> him that the caregiver was to help out Mama (with

> her consent and collusion). I handled the financial

> side while Mama and the caregiver dealt with the

> rest. We live in a small town, so all of Dad's

> doctors knew me. We were able to get them to tell

> him things that he wouldn't take from us.

>

> Dad went through a period were he accused everyone

> (including Mama) of stealing from him. On more than

> one occasion, he threatened to call the police, but

> we were able to convince him not to. The only

> fallout from this period was that my son (who was 15

> at the time and is high functioning autistic) became

> scared of his grandfather and refused to be around

> him when I wasn't present.

>

> As time went on, Dad's delusions became more

> creative and less tied to reality. I captured

> several of these in a blog

> http://lifewithdad.blogspot.com/ . The blog says

> " Alzheimer's " rather than LBD because that was the

> diagnosis we had at the time I started posting. We

> never got a formal LBD dx, but Dad's progression fit

> LBD better than any other of the dementias. My last

> post is November 28, 2005. Dad passed away on

> December 2, 2005.

>

> My mother had a hard time dealing with all of these

> delusions. She never understood that they were a

> part of the disease and that Dad wasn't lying. We

> had to teach her to laugh at what he said rather

> than argue with him.

>

> Margee

> --

> LO--Dad

> Passed away 12-2-05

>

>

__________________________________________________