Re: How on earth do I cope?

[Guest guest]

Hi ,

My father was also diagnosed this past year, around August. It was a terrible

time, trying to understand what was transpiring for him and making any sense of

his behavior as we waited on a diagnosis and treatment. He was VERY hard on my

Mom, and for whatever reason, partly I'm sure because I wasn't living there (I

live a mile away) I was 'the good guy'...he would call on me for help, or tell

me to bring the police...there was lots of crazy-making behavior. Truly a

frightening time to go through, and I feel for you, totally!

There are a lot of good resources online about LBD, including most especially

this group and the resources it has on it's own yahoo site.

I understand your fear, and that 'out of control' feeling that not only he, but

the rest of you are going through! You will hear and see things that you never

would have believed would come out of your father, as it sounds like you already

have.

You asked a very valid question: " How do I deal with this? " It is truly a

moment by moment, day at a time thing. I imagine there are lucid times as well,

or times that he seems somewhat lucid. Realize at those times that he is

probably terrified himself, because he knows something is wrong and something is

happening. I would recommend not arguing with him, although I can't say that I

have found what many folks in the group say about how he won't listen anyways if

you do...I think either we are very fortunate with Dad, or it is timing and

delivery, but there are times when he really does not mind being corrected and

even seems to seek it. BUT, it can't be done with a raised voice, or in a

manner that might imply he was incompetent in some manner, because as a matter

of course he would be defensive about that. Also, please remember that you, and

anyone else that is dealing with him or living with him, need to get away

sometimes. You need a break for your own mental health.

I'm curious as to what stage you are in the medication regime? We found (again,

we were really quite fortunate) that once good meds were established in his

system, things settled down...it is still a 'new normal', but they settled down.

The doctors also made it clear that THEY were the ones that took his license

away, which helped us to point the finger in their direction so he wouldn't feel

it was a family decision. Much easier to have him angry with someone that he

sees perhaps once a month! I think the suggestions you got for the kill switch

on the car are great; I don't know where you are located and what access you

have to a place that could install such a thing, but another quick response you

could consider in the meantime is to get a hold of his key to the ignition and

just take it in to the hardware store and have them add or alter a notch; it

won't work any more. And if he 'knows' his key from a design on it or

something, he'll still believe he has that power of independence.

I have found as a psychotherapist that dealing with someone that is distressed,

it can really help to de-escalate the situation to talk a little more slowly and

softly as they grow more agitated. You aren't fueling the fire that way. If he

can be distracted to another subject, that would be fantastic, but if he's like

Dad, when he's on an issue, especially in those early days, it was not something

that you could distract him from.

I really feel for you. Another thing you could try with your dad is, in

addition to modulating your voice and responses, walking him through some logic

to try to turn his thinking around. I would do it in pieces that he could

follow (and of course, if he's outraged or something, he's not going to

cooperate). I'm trying to think of examples because it is hard to describe what

I mean. One example...Dad called one morning and said he needed me to do

something that sounded strange, but he needed me to do it right away. He then

told me that I needed to come over and I needed to bring the cops. Well, I was

stunned!!! I woke to the phone ringing, and couldn't find out why from him as

he quickly got off the phone. What to do? Do I ignore it and stay home, or do

I rush over there and feed into a situation...??!?!?! Well, I prayed, honestly,

and felt that I needed to go over there. So I did and he met me at the gate!!

He was watching for me! And he whispered to me " Did you bring the cops?? "

because my Mom was nearby. Rather than say anything that might be offensive or

minimize his importance, I explained simply that I hadn't called them yet

because I just needed to see what was happening and what reason I would be

giving them for coming out to the house. He accepted that and I just headed for

the house and we all went inside and talked it through. As I recall, he felt

Mom was a 'staff' member and that he wanted his gun. EEK! (She had put it

away, but he had surreptitiously been looking for it all morning!) Sounded

really frightening, but after talking some more about it, it came out not that

he wanted to use it, but that he was afraid the 'staff' would use it on him! So

then he wanted the gun and I could take the bullets. Well, ultimately he agreed

that me taking the gun to my house was a really good answer because they

couldn't get it OR the bullets that way (I took it all). But my response as to

why I didn't bring the police was by trying to use a little logic that he could

just be put off with. Or, we worked on who Mom was a lot, especially in those

earlier days. He thought she was at least three people, that she was having an

affair...all kinds of things. So again, I tried to use a bit of logic on

him...when he and I were alone, I suggested we come up with some very specific

questions he could ask her at any time, that only she should know the answers

to. So we did that...over a course of days! And it did not SOLVE the problem

but it diffused it, and gave him some 'ammunition' and safety checks in his

mind. I also would say at times that these people really all were Mom, but that

alone would not resolve his concerns, so I came up with the 'questions' idea.

You see, just one part of the problem it seems many with LBD go through is that

loss of control...they aren't allowed to drive, they aren't sure it's their

house, whatever issue it is (or issues!)...AND they know they aren't fully in

control of themselves, either, and again, that's frightening. I have become a

little more touchy about people joking about how folks with dementia at least

don't know they have it....because I can assure you in our case it was very

clear to Dad that something was terribly wrong at times.

Please see to it that your Mom never lets him drive again, and that something is

done to the vehicle or his keys right away so he never drives again...it is so

terribly dangerous. Those three hours must have had you beside yourself!

Use this group...it's a great resource. I can assure you, you're in lots of

people's thoughts as you deal with this.

Keep writing!

Lori

How on earth do I cope?

I'm a new name around here

My name is , and in late December of 2010, my father was diagnosed with

LBD. It's been a very scary, rough road with him. My father is a master

manipulator, and also extremely belligerent since his diagnoses.

My writing here is mostly to find support and to ask how all of you have coped

with dealing with this disease.

It's been extremely scary.....he has always dealt with depression and became

especially depressed while sick in the hospital. Before he was discharged, I

removed all guns/ammunition/sharp knives/etc from our house, as he has had

suicidal thoughts in the past. We had to take his car keys away and he became

extremely angry, attempting to hide his discharge paperwork that said 'no

driving' and even calling a local tow company to get is car so he could have a

new key made.....things like that.

He has used extremely hurtful words towards all of us (my mother, brother, and

myself), cursing and directly calling all of us names.

I'm away at school full time, but upon returning home this evening I

discovered that my mother caved and gave him his keys back until his next

doctor's appointment. He went tonight to pick up pizza (against everyone's

wishes) and it took him 3 hours to make a 10 minute drive. I'm extremely

worried.

I just......feel so helpless. I know it's the disease talking when he says or

does awful things, but he's always been someone that I haven't really gotten

along with....I have no idea what to do.

How do I deal with this?

[Guest guest]

-

 

I'm so sorry you have had to seek out this group, but so glad you found it! LBD

is a heart- and gut-wrenching disease. I have always said that LBD has brought

out the worst parts of my mom's personality at times. I work in a nursing home

and care for many with dementia, but I can really see a difference between those

with Alzheimer's and LBD. The ones with LBD (my mom included) seem to have more

awareness regarding what is going on with them and that things are just not

right. It's scary for them. My mom sometimes says she is hiding somewhere inside

and just can't get out. It's scary for the caregiver, too, because we want so

much to help and don't always know what to do. We saw many instances like the

ones you describe with your dad. We also had to hide knives, scissors, and

anything we thought might be dangerous. We heard many angry words and witnessed

signs of agression. Starting Namenda and Seroquel has decreased those episodes

tremedously. Namenda

helps with congnition and Seroquel helps with agitation and anxiety.

 

Much thought and care has been put into the files and links sections of the LBD

Yahoo Group--read and learn as much as you can. Never hesitate to ask a question

of this group. You will receive much in the way of wisdom and understanding.

I've said it before and I'll say it again--finding this group when my mom was

first diagnosed saved me and gave me hope during a most difficult time. I hope

your mom and brother will be willing to learn right along side you.

Communication and a united front will be very important.

 

Wishing you peace - Katy, daughter to Jill

[Guest guest]

Hi Dear Lindsey,

Welcome from the state of Texas. To me it's cold here so I can't give you

a big warm Texas greeting. You are in the right place, among the finest

caring people I know.

It is a sure thing that you have been helped a lot already, but I'll add a

word, and read the mail later.

You are very wise in getting rid of all the weapons! Anyone as agitated as

your Dad could very easily use something on any one, or all, of you. I had

to do the same thing.

I feel especially bad for your mother. I was 77 when my husband died. I

kept thinking I can't stand it, but with one day at a time, and a lot of love

I made it.

I can't stress the word LOVE enough. That means showering him with

attention, Hugs and expressions of caring.

My husband gave me his keys. We had talked about it a long time, and he

became

aware that it had to be done. Expressions used were, " You are a very

thoughtful, caring person, and I know you don't want to kill a child. So when

you are ready, I'll do the driving for us. " Etc. Other times, I told him

although he was scaring the daylights out of me, that I knew in time he would

know when it was time to give up his keys. Well, a big SUV came within

inches of hitting him, on his side of the car, when he had run a red light. He

handed me the keys, and never asked for them again. It was time, and he knew

it.

Of course for about three months of my driving with him in the car I would

come home crying. It was awfully hard. Finally, he settled down and let me

drive. I kept reassuring him I had been driving all over the country for

60 years without any accidents, and only a couple of parking tickets.

Your Mom will have to let some things in the house go. Not to worry about

it all.

Do what she can, and you children will have to do the rest. Or, find a

place and place him. If he is a danger to himself and the family then, he has

to be placed.

There again, it is very hard on a patient to be moved around from place to

place. Yet, my husband went on such rampages that I was asked to take him

home. He wound up being in 5 nursing homes for only two weeks or less.

Well the first place lasted about ten months with him pleading and begging me

to take him home. His rampages were so bad I was forced to do something.

I put him in a hospital, and they placed him in another home. My husband

picked up a wheelchair footrest and hit a man in the face with. Of course

the man was bloody, but not too badly hurt. My husband was sent to a psych

hospital who sent him home with me. I begged them to find him another home,

and they said no, that was my job.

For the most part out of the five years that he was the sickest I had him

here with me. He was usually gentle during the day, but come evening he

kicked the walls and hollered for the police. I called the police, and he

calmed right down. I assured him the police was there to check for anyone

lurking around the house. Assuring him made him feel better, and he was ready

for

bed.

The one thing I did do for my husband was give him very nourishing meals.

Cooking three meals a day was very hard. I would make left overs a lot. He

didn't mind, especially if they were mixed with other foods he liked. Yet,

he still lost over 50 lbs. That comes with the territory.

Your mom will need someone to bathe him when he gets to that stage. I just

couldn't do it. If you can get a person to come in to bathe him and

prepare his lunch, and what ever in that area, it will help her a lot.

Right now, the first things needing to be done is all his paperwork in

order. I am sure someone has explained all that to you.

And get a Doctor that knows and understand LBD well. Your Dad can get help

for his depression, and then he will settle down a lot. My Don, took

Zoloft. It worked wonders. What ever works do it!

But, for now LOVE, LOVE, LOVE. Even with all the ugly talk, fill your

hearts with love and show it to him. Be happy around him. We can't imagine what

our loved ones are going through.

You are young and this is bound to be overwhelming to you, as it is to

your mother. You have come to the right place. More help will come to you over

time.

Knowledge is power.

Love a lot,

Imogene

In a message dated 2/12/2011 12:13:29 A.M. Central Standard Time,

horseygal100@... writes:

I'm a new name around here

My name is , and in late December of 2010, my father was diagnosed

with LBD. It's been a very scary, rough road with him. My father is a

master manipulator, and also extremely belligerent since his diagnoses.

My writing here is mostly to find support and to ask how all of you have

coped with dealing with this disease.

It's been extremely scary.....he has always dealt with depression and

became especially depressed while sick in the hospital. Before he was

discharged, I removed all guns/ammunition/sharp knives/etc from our house, as

he

has had suicidal thoughts in the past. We had to take his car keys away and

he became extremely angry, attempting to hide his discharge paperwork that

said 'no driving' and even calling a local tow company to get is car so he

could have a new key made.....things like that.

He has used extremely hurtful words towards all of us (my mother, brother,

and myself), cursing and directly calling all of us names.

I'm away at school full time, but upon returning home this evening I

discovered that my mother caved and gave him his keys back until his next

doctor's appointment. He went tonight to pick up pizza (against everyone's

wishes) and it took him 3 hours to make a 10 minute drive. I'm extremely

worried.

I just......feel so helpless. I know it's the disease talking when he

says or does awful things, but he's always been someone that I haven't really

gotten along with....I have no idea what to do.

How do I deal with this?