Annette - Re newbie

[Guest guest]

Hi Annette, welcome to our group of caring people.

I have noticed that, almost without exception, everyone who initially posts

apologises for rambling. I want to tell you that your apology is really not

necessary. One of the great things about this group is we can all identify with

the need to " ramble " and are interested in what you have to say and you can

ramble anytime you feel the need to do so.

I do identify with all you say. My mum, Jo, was Dx with LBD about 10 months ago

and, looking back, she had had the symptoms long before. I have lived with Mum

and cared for her full time since January this year. I am lucky my

circumstances are such that I can do this. I also get lots of relief from my

sister and two brothers. It is difficult seeing your mom gradually become

someone else, and I find myself yearning for the days when Mum was well.

I liken looking after mum to looking after a child, the depressing part is

knowing it is pointless trying to teach her things as she is just going to get

worse. I know this might not help but realise it is the reality of the

situation. I arranged for her to go to Adult Daycare and remember the first

time I dropped her off there; it was like taking a child to school for the first

time. Reminded me of the first time she took me to school 40 years ago.

Mum has four grandchildren and they all love her unconditionally and enjoy

spending time with her, with all her eccentricities. We also realise we can't

leave her on her own with her grandchildren, but that is OK.

It is important, nay vital, that your mom's husband gets all the support and

relief he needs while caring for your mom, and hopefully the community support

available will live up to expectations. I know here in New Zealand the

community support is wonderful.

LBD, often referred to here as The Beast, is difficult to deal with. The things

mum says and does are not things that are part of her personality, and I believe

it is the beast that says and does these things, not mum. I also get an

occasional glimpse of the mum that I knew and find these times very rewarding.

She does like to reminisce and if you could get your mom onto talking and

experiencing good things from the past that may help.

I recommend you look out for a book, called, " The 36 Hour Day " , written by

L Mace and V Rabins and published by The s Hopkins University Press,

ISBN 0-446-61041-0. I have this book and refer to it frequently. It has real

life examples of events that occur, and advice as to how to handle these events.

Annette, it is not an easy time for you and my heart and thoughts go out to you.

newbie

Hi everyone,I have been listening in on your conversations for a few months

now and have finally decided to say hello. My mom was diagnosed with LBD after

a very unfortunate introduction to neuroleptics. She was basically on

everything she should not have been on and ended up in the psych ward of our

local hospital - incoherent, unresponsive and looking like she was going to

die. I cannot tell you how I felt at that time. I was pregnant with my second

child and either wanted my mom to die or get really better. I did not want a

mom who did not know me or my children. She was then transferred to the

provincial mental health centre and was properly diagnosed....they stopped all

neuroleptics and nursed her back to health and to us. A couple of weeks ago

she was admitted to a long term nursing care facility and we thought our lives

would calm down. Well , on a weekend pass to her husband's house she decided

she would not go back.. It would have taken physical force to take her

back and I just couldn't do it. She is now living with her husband again who

is quite a bit older and I'm not sure if he can handle it but I have to let him

try. I have requested help from our community care agency to give him some

caregiver relief and I hope it will be enough. I have a toddler and a baby and

am not able to take care of my mom but I feel so responsible for her. I am her

power of attorney and know that one day I will have to send her back to the

nursing home. I am not looking forward to that day. I just spent the last week

with my mom at my house and I felt that I was looking after three kids. I love

my mom and want to do the best for her but I do not have the energy to do it

all. Her hallucinations have died down but her memory and her reasoning are

brutal. Her problem solving and direction taking are very poor and her sense of

time, money and decency are practically gone.. I just miss my mom and wish I

had someone besides my husband to help me take care

of my kids. My kids love her but I cannot leave them alone with their granny

and it hurts...

Anyway...sorry for the rambling, I've had a couple of glasses of wine and I

just needed to get this off my chest....

Annette in Ajax, Ontario, Canada

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