Re: Randomequine: How on earth do I cope?

[Guest guest]

Hello, sorry I don't know your name.

I am so glad you found this support group. You are in the right place for people

to know what your family is going through. I know I felt lost and alone in

battling this dreaded disease until I found this support group. Everything you

are describing, I have been through.

My husband just passed away in January after about 15 years of having to deal

with extreme behaviors. When I look back, the early stages of LBD began to show

up around 1996 when my husband would tear up the mail and place things in odd

places where they didn't belong and clean drawers and closets out in a frenzy,

he had a caregiver staying with him during the day while I worked full time, the

caregiver allowed him to go out and get the mail and by the time I arrived home

the bills were torn up and all the mail. The caregiver had a hard time believing

my husband had dementia, because of the fluctuating cognition, that is often

called, " Show Time " here, because my husband could seem like he was very normal

in conversation with other people. It was very frustrating in the beginning,

because of the fluctuating cognition and explaining to people that my husband

was confused and delusional. Since most people didn't see that side of him, I

began to think maybe it was me not seeing things correctly. It is a very

frustrating disease to deal with in the beginning.

I had the same problem with the car and I could not sell the car, since I loved

that car and I drove it. The problem with Lewy Body is that they can remember

certain things and my husband WAS NOT going to give up driving, that was his

independence. I found out that I would be liable for him driving knowing he had

dementia if he should take an innocent person's life on the road. It would have

been bad enough if he was killed in an accident, but to take another person's

life and knowing I would be liable for that made me move that much faster to get

him off of the road. The neurologist knew that Jim had Lewy Body, so there would

have been no hiding that I  knew my husband had dementia. I would have been

liable if they sued for my husband taking an innocent life.

Here is what I am talking about when I say, they can remember certain things. My

husband would lay down to take a nap and I would check on him and it would look

like he was soundly sleeping, but everytime I would get in the shower when he

was taking a nap, he would have one ear open to hear the water running and that

is when he would be up and out and I would hear the garage door open, but I was

helpless to run out since I was in the shower. I started putting a robe in the

showerroom and when I heard the garage door open, I ran out with a robe on and

hit the switch for the garage door to close, he continued running the car, I

tried to get in the car to take the keys, but he automatically locked the doors,

so I couldn't get in the car, I had to open the garage door, so exhaust would

not fill the garage and he zipped out so fast, he was gone before I could blink

an eye. One day he was at a busy intersection and he hallucinated that he saw

an

accident and there were people everywhere standing around, so he got out of the

car at the intersection and began walking to see why all the people were

standing around. There were construction workers working on the road near by

that saw my husband walking down the intersection and one of the men approached

him to find out why he was walking down the busy intersection. My husband

explained to him and the guy had my husband get back in the car and followed him

home and told me the story. I called the neurologist as soon as I heard the

story and the neurologist had my husband's license revoked.

When the notice that my husband's license had been revoked arrived in the mail

and I sat down with him and read it to him and he looked at it, he said that

notice didn't mean anything as long as he had his driver's ID, he could drive!

He had that driver's ID so close to him, I could never get hold of it. He

continued to drive away everytime I got into the shower, which was becoming a

rare thing, since I was afraid to get in the shower knowing he would drive away.

One day while he was taking a nap, the car keys fell out of his pocket onto the

floor and I got them. The next day while I was in the shower, I heard the garage

door go up and out he went. They can remember certain things. He remembered to

have the car keys copied everytime he went out, so he had many of them stashed

away and well hidden. I decided to call the Highway Patrol or in some states

they say, State Trooper, I live in California. I explained my dilemma and asked

that they send someone to the house to talk to my husband about the dangers of

him being on the road. They sent a 30ish something guy that almost agreed with

everything my husband said. My husband told him it was his independence and the

officer agreed that he probably would think like that too. Everything my husband

told him, he did not want to offend my husband, and led my husband to believe

that he was on his side and that he could drive. After that the Highway Patrol

knew, so I called them everytime he pulled out of the garage, but they never

found him, my husband would come home before they found him and I would call and

let them know. Soon after my husband was in a minor accident and clipped a car

pulling out of their driveway when my husband came around a turn. Thankfully, no

one was hurt, but the guy my husband clipped was not happy. Our insurance had to

pay for the repairs and all the while I was telling a friend of my battle with

the car and she said when the car goes in for repairs have a   " Kill Switch "

installed. Our car did not have one, but all the newer cars I believe do. In the

late 90s it only cost $5.00 to have it installed and it took less than 15

minutes to put it in. It is a small device about the size of a thumb under the

steering wheel and when removed the car can not run. It plugs into a port. My 

husband could not see it and the day I brought the car home from repairs, I

removed the " Kill Switch " and he went out as usual while I was in the shower and

the car would not start, so he ran back in and said he needed to call the tow

truck, the car was not working. I said, " But I just drove it home and it worked

fine, let me try it. " He got in the car and I pretended I was fixing a loose

wire under the steering wheel. In his right mind, he would know I know nothing

about car wires, but I plugged in the " Kill Switch " at that time and the car

started. I had to play the loose wire game with him for about 2 weeks and then

he gave up, since I was the only one that could start the car and he never drove

again after that. He always wanted a key, so I gave him old keys that didn't go

to anything and he was satisfied just to have a key.

My husband when delusional would curse at me, but I learned not to take it

personally, it is the disease talking and not my husband, and I could let it

roll off my back. They do not want to be that way, as much as you do not. They

can not help themselves. You must remember that they are not themselves anymore

and not take things they say so personally when it is hurtful. My husband would

accuse me everytime I went out the door to go grocery shopping that I was

leaving to meet my lover. Sure, it hurt at first, but we needed food and I had

to learn to ignore his words. I knew I was doing nothing wrong, so his words

could no longer hurt me.

You will find that you can identify here with so many people and your family

will find out you are not alone in this battle and if you take the advice and

knowledge of the people that have been through this before you, it will help a

great deal. Some things may not work for your dad, but you can take a little

advice from this person and that person and add your own creative ideas how to

settle something and it will work out for you.

Hang in there, You are in my thoughts.

Take Care,

Jan Colello

San Francisco Bay Area, CA

husband, Jim, dx w/LBD 2003

Deceased January 22, 2011

________________________________

To: LBDcaregivers

Sent: Fri, February 11, 2011 8:24:48 PM

Subject: 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?

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