Re: What should I expect as LDB progresses?

[Guest guest]

Sorry to hear about your father.  I remember when our granddaughter was your

childrens age, she was afraid of my husband. He didn't sit staight, smile much

and walked funny. The hardest was that we couldn't let him pick her up as he was

not stable himself.  We talked alot with her and since we only saw her twice a

year so grew out of that. She is eight now and knows he won't get better. The

truth is the best so they don't ask questions in front of him. That is my

experience.

________________________________

To: LBDcaregivers

Sent: Tue, May 31, 2011 8:37:29 AM

Subject: What should I expect as LDB progresses?

 

Hi-

A brief history.

My dad was diagnoed at 62yr with parkinsons ayr ago, about 6 mo ago my

stepmother and I self diagnosed LBD. About 3 weeks ago he had a break down,

resulting in hospitilation. He went to the Univ of Miami and had a full work up.

It was discovered that he does not have parkinsons, he is in the late stages of

LBD. The docs think it first presented about 4 yrs ago from family history and

stories. He is moving to a nursing home today. The doctors agree that he needs

24 hour secure care as he acts out his dreams and hallucinations. He is becoming

a danger to himself and my stepmom so can not stay at home. He does not know

where he is going, just that he is moving today. I live in London, he lives in

Flordia. I will be out to visit for the summer with the kids, 3 and 2 yrs old. I

am still getting to grips with everything, done tons of research, Guess my

questions are - How to tell him why he is in a nursing home? How to prepare the

children for why Poppi has changed and why he might think my daughter is me? AND

really wonding how this will end? Will it be the sames as those with parkinsons

as well? He is progessing so fast mentally, he can still walk and dress and eat.

But really going down hill mentally. Sorry if I am rambling, just looking for

some first hand advice. He has had very bad reactions to drugs and currenly is

only on Chlonazepam 3 times a day.

Thanks for your support

[Guest guest]

Hello ,

I hope your dad’s move went well. Sorry I didn’t read this email before the

move occurred. Many of us tell our loved ones that the doctor has said things

must be done this way whenever a tricky situation arises. It takes the pressure

off and adds a little more weight.

Sending you and your family strength.

Courage

From: rayner.erin

Sent: Tuesday, May 31, 2011 9:37 AM

To: LBDcaregivers

Subject: What should I expect as LDB progresses?

Hi-

A brief history.

My dad was diagnoed at 62yr with parkinsons ayr ago, about 6 mo ago my

stepmother and I self diagnosed LBD. About 3 weeks ago he had a break down,

resulting in hospitilation. He went to the Univ of Miami and had a full work up.

It was discovered that he does not have parkinsons, he is in the late stages of

LBD. The docs think it first presented about 4 yrs ago from family history and

stories. He is moving to a nursing home today. The doctors agree that he needs

24 hour secure care as he acts out his dreams and hallucinations. He is becoming

a danger to himself and my stepmom so can not stay at home. He does not know

where he is going, just that he is moving today. I live in London, he lives in

Flordia. I will be out to visit for the summer with the kids, 3 and 2 yrs old. I

am still getting to grips with everything, done tons of research, Guess my

questions are - How to tell him why he is in a nursing home? How to prepare the

children for why Poppi has changed and why he might think my daughter is me? AND

really wonding how this will end? Will it be the sames as those with parkinsons

as well? He is progessing so fast mentally, he can still walk and dress and eat.

But really going down hill mentally. Sorry if I am rambling, just looking for

some first hand advice. He has had very bad reactions to drugs and currenly is

only on Chlonazepam 3 times a day.

Thanks for your support

[Guest guest]

Sorry to have to tell you, you will not know what to expect, and as someone

reported recently, if you have seen one person with LBD, Leona: Caregiver

for husband Ray, age 68, diagnosed 2/04 with Parkinson's Disease. Changed

doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter

what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing Home in Oswego,

NY, 1 hour from home. So far, so good! Hardest thing I have ever done in my

life, however. 3/19/09 transferred to Samaritan Keep NH in Watertown, NY

closer to home. He passed peacefully at 5:18 am on April 14, 2009. I am

handling it OK.

you have seen one person with LBD because everyone is different and

unpredictable. There is no pat answer to how he will proceed under the

throes of LBD. There is a list on the LBD files which gives you stages and

a list of symptoms that people see. I can tell you this much about your

children and your father. The children (my grandchildren were a toddler and

younger when PaPa was sick and in a nursing home) but the oldest at 2 and 3

knew that grandpa wasn't like everyone else even when she was too young to

explain. They loved him and doted on him even though sometimes their noise

would upset him. One day he went out the door unattended and Caitlin at 3

came running and yelling " PaPa out, Papa out the door " Nobody had ever told

her that PaPa shouldn't go out the door alone but she knew. They will be

perceptive and you can tell them when they get old enough to understand. It

was amazing to me what they realized. Good luck and I hope your summer is a

pleasant one. If he is like a lot of LBD patients, he will want to go home,

even when he is there. God has the timeline. Love, Leona

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

Please read the " Welcome New Members " message which is posted here regularly. I

don't want to alarm you but Clonazepam is a benzodiazepine derivative. It has an

extremely long half-life in the elderly. Withdrawal is also slow and difficult

to manage.

>

> Hi-

> A brief history.

> My dad was diagnoed at 62yr with parkinsons ayr ago, about 6 mo ago my

stepmother and I self diagnosed LBD. About 3 weeks ago he had a break down,

resulting in hospitilation. He went to the Univ of Miami and had a full work

up. It was discovered that he does not have parkinsons, he is in the late

stages of LBD. The docs think it first presented about 4 yrs ago from family

history and stories. He is moving to a nursing home today. The doctors agree

that he needs 24 hour secure care as he acts out his dreams and hallucinations.

He is becoming a danger to himself and my stepmom so can not stay at home. He

does not know where he is going, just that he is moving today. I live in

London, he lives in Flordia. I will be out to visit for the summer with the

kids, 3 and 2 yrs old. I am still getting to grips with everything, done tons

of research, Guess my questions are - How to tell him why he is in a nursing

home? How to prepare the children for why Poppi has changed and why he might

think my daughter is me? AND really wonding how this will end? Will it be the

sames as those with parkinsons as well? He is progessing so fast mentally, he

can still walk and dress and eat. But really going down hill mentally. Sorry

if I am rambling, just looking for some first hand advice. He has had very bad

reactions to drugs and currenly is only on Chlonazepam 3 times a day.

> Thanks for your support

>

>

[Guest guest]

Update: Thanks for all your support and advice.  Dad moved to the nursing home

well.  He has slept through the night for the last two nights,  something he has

not done in a while.  He has only asked once to 'get me out of this *******

place' but soon settled down.  He can find his room and is now using a walker

which seems to help.  On the meds frount,  he has cut out his night does,  and I

do understand Benzos are not the best,  but this one seems to be the only thing

he can tolorate.  It really helps with his REm sleep disorder and helped with

this last breakdown.  I will be out there in a week and hope to talk with my

stepmom and the doctors about other options on the med frount. 

thanks again

[Guest guest]

Hi

I am really sorry to hear that your father has LBD. It must be very hard to

keep in touch with what is happening to him when you live so far away from

Florida.

It is great to hear that you are doing lots of research. I also found it

very helpful to accumulate as much knowledge as I could about LBD, though at

times I found that reading too much information about where the disease was

heading became stressful. It was sometimes hard to reach a balance.

The following quote came from someone in the MSA support group. I found it

to be very wise advice:

" Try not to worry over what may be coming next but simply grow into each new

experience and it will naturally become the new normal. "

Wishing you all the best as you face these new experiences.

Elaine (61) from Sydney Australia

Carer for husband Jim (82) who was offically diagnosed LBD Oct 2009, but

symptoms began at least 5 years before.

Jim died peacefully in hospital on 12th February 2011.