Hello Everyone

[Guest guest]

My name is Carole, i live in Port Hope, Ontario. My mother was diagnosed with

LBD approximately a year ago. She is 73.... It took several Dr.s appt to finally

find out what she had. We thought for the longest time she had Alzheimers as she

was forgetting things, losing her balance, not remember what she was going to do

the next day or where she lived. They put her on medications, lots of them,

which left her having hullicinations. She talked about people living between the

floors of her condo. Men coming in and building a house between the floor

boards. Little girls in her closet with candles. Sitting up on the shelves

watching her. Men sitting in chairs watching her. She would be invited over to

our house..and she would literally fill a suitcase with her possessions afraid

the people in the house were going to steal something. She was petrified all the

time, the children in the closest were going to start a fire with the candles

they were carrying while she was visiting with us.

Last summer, she went cottaging with my father, brother and sister in law. She

was invisioning my brother trying to kill her. Saying that while sitting around

the camp fire, he had a Dr.s mask on and that he had anesthetic. They took her

to the cottage to put her to bed for the night. She woke up several times.

Approximately 5 am , my brother and father awoke to Police knocking on the

cottage door. Mom had got out of the cottage, crossed two highways and went to a

neighbours, told them dad and my brother were trying to kill her. She used the

neighbours phone to call 911. The ambulance came, strapped her to a stretcher.

Took her to the hospital and referred her to a Dr ( Neurologist) in Toronto

....he was the one that finally diagnosed her with Lewy Body Disease.

Dad has since retired from his job, to tend care for her. Mom and him are

living with my sister in Barrie. Mom is confused, doesn't realize where she is

living. Keeps telling Dad they need to find a place to live. Mom calls me all

the time saying..they are being mean to her..locking her in the house..not

letting her go out or use the phone. She eats very little. Stares into space,

she fiddles with her buttons on her shirts, saying they need to be mended. She

doesn't sleep, walks the house at night..she also has restless leg syndrome.

She said the sheets are too tight, that Dad is tying her up in the bed..and is

insistant on cutting all the bed sheets to size. It has become compulsive with

her that everything needs to be fixed, cut, sewn or mended.

She falls all the time, walks hunched over, with a shuffle. She is bruised all

the time from her falls. She walks with her eyes closed, needing someone to

always be holding her hands. She spent the weekend with me, and my family and i

couldnt believe how much she has deteriorated. When i try to put on her

slippers, she has difficulty realizing which foot i need her to lift. I touch

the foot i need lifted in order for her brain to connect to the movement. You

can see her desperatly trying to lift her leg but her brain just wont help her.

Its as though there is a lack of connection between her brain and her mobility.

She needs help walking, going to the bathroom, bathing, eating, dressing.

We all want to help her...i have 3 sisters and one brother and we are all very

concerned for her. We my family would like to join your group in hopes that we

can find ways to help her enjoy what years she has left. It is very hard on all

of us seeing Mom like this..sometimes she doesn't remember us. Mom knows that

she's confused. The medications leave her sleepy, and drowsy all the time. We

just all want to make sure we are doing everything right and hope that your

group and members can guide us through this or perhaps guide is in the right

direction to an assocation that could help us make her life more comfortable !

There is no life left in her eyes and i miss her so much !

Carole & Deny Konecny

www.bowbellgoldens.com