- Ont.

[Guest guest]

-

Yes, for sure. And, with my dad's experiences

my hope has always been to help atleast one

person on their journey. Life is full of learning

so if there is knowledge in my dad's experiences

I hope and pray someone will find use in it.

Thank yo for writing . Stay strong.

Hugs-

Sandie

dad, Merle, passed from LBD 9-20-02, age 65

-- Re: :-)

Sandie,

Your story reflects the difference a few years can make in developing this

awful condition.

Awareness is key, sharing and finding what does and does not work. Let's

hope the gains

made in the past few years continue! I wish I knew then what I know now for

my mom.

, Oakville Ont.

Mom 92, 13 years " Parkinsons "

3 1/2 years ago LBD diagnosis, evident much longer in hindsight.

Encouraged to give up her licence 6 years ago.

Eltroxin, Tylenol 1g 3 times a day

Off Aricept since Feb./06

On " gentle care " June 30/06, spoon-fed pureed foods, swallowing very

compromised

> A few more details about yesterday...

>

> Mom picked up everything I said to the social worker when we stopped

> at the front desk. She never does this, as though she can't

> comprehend our fast talk. Every comment/question I had for the social

> worker, mom participated.

>

> * Asked the time of the BBQ they're having next week - mom wanted to

> know about it too and looked at the flyer.

> * Before I could ask my questions mom made her important needs

> addressed by letting him know that her eye hurts really, really bad.

> I think it's awesome that she was able to verbalize that she was in

> pain so that they don't brush it off -- she cried for them and now

> they know they need to make her feel better real FAST.

> * I asked if the social worker would like mom's dentist x-rays for

> her files -- and mom asked what's that? I explained it was her x-rays

> and she expressed that she didn't want anything done to her teeth. We

> confirmed that we weren't going to do anything, that we wanted to

> make sure she was OK by having the Xray but we would not do anything.

> Which confirms that although before she can't express herself, she

> does pick up what is going on around her. She understood that the

> dentist wanted to know if we wanted all her teeth extracted b/c of

> 50% bone loss and bad gums and get her dentures (the family already

> decided NO - but mom wasn't aware of our decision b/c it was

> discussed without her presence via email) - and she was now able to

> express that NO she doesn't want anything done.

> * I gave the social worker a check for mom's personal needs account

> and she wanted to know what that check was all about and we had to

> explain that it was for the hair dresser and podiatrist appointments.

> The social worker asked if mom would like her hair done and she

> expressed not today... and he asked if next week would be good and

> she expressed, yes, next week was a good time.

>

> LOL -- it was amazing to have these conversations with the head

> nurse, social worker, front desk attendant, mom, myself -- all

> together. We all made decisions together.

>

> The nurses must think I was insane when I passed by them on my way to

> the kitchen to let them know that mom wanted jugo de naranja!! LOL

> I kept saying she ASKED for naranja - orange juice in Spanish. I

> think they think that I'm making this up! LOL It was awesome!

>

> I brought mom a smoothie b/c she's into healthy foods. And she took a

> sip, winced and told me " I don't care for that at all. " LOL And I

> tried it and it was pretty nasty so her facial expression and comment

> was dead on.

>

> Hope I see the same tomorrow!! I hope, I hope, I hope!!

>

>

>

>

>