Re: To Carole - Re: Hello Everyone

[Guest guest]

Dear Carole,

 We're so sorry you had to find us, but this is definitely a great place to be

for those of us with loved ones who have LBD. I am not reading my e-mails in

chrono order, so am wondering: did our site moderator send you the list

of links to all the info we maintain? If not, she surely will, as she keeps a

close eye out for newcomers.

 

LBD is a nasty disease, but many can be helped for long periods of time. My mom

was diagnosed over 5 years ago, but seems to have had it at least 7. The keys

seem to be: a doctor who is familiar with LBD, as treatment for this disease is

not the same as for Alzheimer's; proper medication; family education; and

knowledge of the resources for help in your community.

 

The links will send (sorry I can't do so: lots of firewalls on my work

computer) list the medications LBD experts recommend as the front-line and

supportive treatments. Our loved ones can generally be helped with memory,

cognition, confusion, hallucinations and delusions. My mom, too, called me all

the time with similar concerns - and while she still has LBD, most of the

symptoms have been treated with the proper meds.

 

Please let us know what meds your mom is on and what's available in her

community so your dad can get support if and when he wants it.

 

Your parents - and you - are in my prayers.

 

Lin

 

Subject: Re: Hello Everyone

To: LBDcaregivers

Date: Thursday, September 11, 2008, 3:24 AM

Dear Carole,

My father is from Toronto and he was diagnosed a year ago with LBD.

He is 84 years old.

My sister and I have gone thru all the ropes with this disease and

have acquired quite a bit of experience in all the aspects of care

(legal, financial, OHIP, CCAC, medications, specialists, etc.) for a

loved one with LBD in Ontario.

If you have any questions or need any specific advice, please let me

know and I will be glad to share with you all our findings.

You are not alone and you will find valuable info and warm support in

this group.

Our thoughts and prayers are with you.

Shomy.

>

> 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

>

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