Re: mom with LBD

[Guest guest]

Hi, Maureen,

That is great news that the nurse is coming tomorrow. The sooner, the

better! My heart goes out to you trying to deal with your mom and LBD, and

having

to try to explain it all to your young son. It is a hard disease for adults

to understand, much less a six year old. I am the baby of my family, too,

so we have that in common. I wish there was some way to ease you journey with

your mom and LBD, but we are always here for moral support along the way.

Big hugs,

Piper

Caregiver for Dad, , misdiagnosed with Alz. in 1998, diagnosed with

LBD in 2000, passed away from LBD in March 2006.

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[Guest guest]

Maureen, Welcome to both your and your sis.

Good for you. The sooner the better. Start making a list. I always forgot

something. And only remembered it after they went out the door.

Have you and you sis started a journal yet? You may want to. It gets so hard

to remember what is what and a journal really helps.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

mom with LBD

Hello, we just received a phone call from the nurse who was to come on

the 19th of September. She has changed her schedule and will be

visiting our home Tomorrow (Friday 12th) at 9:00 am. Maureen

[Guest guest]

Maureen, I'm thinking a specially built tilt wheel chair might be best for your

mom. I had

an OT create one for Mom, with a sling back to accommodate her hunched back and

head

rest that moved forward to meet her head that was also tilted forward with fixed

neck. We

tried her in one that had a formed posture supported back but it caused a lot of

back pain

for Mom. With the sling back it formed to her hunched back. It was expensive

but she

had benefits that helped pay for it and it was a medical tax write off as well.

I can't

remember but think OHIP paid for part of it. As for finding a used one, I left

both of

Mom's chairs at her nh for other residents to use. Perhaps a nh would have

extra wheelchairs stored to sell, rent, give? In a tilt chair you can position

the chair into a semi

recline that would perhaps enable your mom's head to be more comfortable. Just

a

thought.

>

> Hello, I actually spent the night with my mom last night and stayed in

> her room with her as she has been asking me to do so since moving in.

> We did not have a bad night, but mom sure does alot of talking in her

> sleep. She seems to constantly be calling out to her brother (who

> passed 10 yrs ago) and mother (who passed approx 20 years ago). She

> had me very upset and scared last night cause she said her brother is

> getting restless cause he wants her to come with him?. What more could

> I say other than, " If you feel you want to be with him its ok, and just

> know that we all love you very much and want you to be here with us " .

> I was scared to sleep incase she did go through the night. As my

> sister Carole said the life is gone out of her eyes. I am wanting to

> take a picture of my mom NOW to post on here so everyone can see how

> badly she is hunched over and the fact that she cannot lift her head. I

> thank everyone who has responded to Carole and I since last night, I

> awoke to 27 emails of hope and support and I appreciate all your help.

> We have rented a wheelchair for mom and only have it until mid

> September but we are wanting to purchase one. We are looking to

> purchase a Wheelchair, if anyone has one I am willing to travel from

> Barrie to get it for her. Thanks Maureen

>