Update on Mom

[Guest guest]

Jannis and Jan and all the rest here:

Realizing you are in the end stages is difficult but it does help you deal

with what is ahead. None of the stages are easy and certainly this one is

where you are facing the reality that you have been resisting during these

years. Knowing that you are doing the best you can for them during their

illness is a comfort now and later on. Please try to keep upbeat and make

the best of those wonderful moments when lucidity appears. For those who are

just beginning this journey, all our hearts and prayers go with you. Love,

Leona

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.

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

want to live without.'

[Guest guest]

Thanks, everyone, for your words of support.  It is quite a battle dealing with

all the issues going on here.  It's so good to know that there are others who

have faced what we're going through and who can understand.

 

I think of ways that things could be handled more easily and better for Mom, but

then I have to battle Dad to implement them.  He's very stubborn and very

resistant, and while I know that he would like for things to change, he knows

they won't.  However, if he does nothing to change the routines, then he thinks

everything's okay. 

 

For example, Mom should be in her hospital bed full-time.  I've told him, the

hospice nurse has told him, the social worker has told him, and yet he props her

up in a recliner because " that's what Mama wants " .  It makes it ten times more

difficult to get her up and down for toileting and doesn't support her the way

she needs to be supported, but she's resistant and he caves in. 

 

I don't know what the solution is, and he has total control over what happens

with her.  He won't sign a power of attorney for her, but only for himself. 

 

Siblings are useless.  In the past year, my sister has been here on Christmas,

Easter, Mother's Day, Father's Day and Mom's birthday.  Each time she's stayed

less than two hours.  My brother has been here Christmas, Mother's Day, and

Mom's birthday.   They both live less than 10 minutes away.  I called my sister

to discuss a problem we were having here, and she said, " well, I can come over

for a few minutes tomorrow night, I guess, and have a talk with Dad.  But you're

there...why can't you just handle it? "

 

I hung up on her. 

 

Dad gets depressed because they don't come over, and then gets angry because I

AM here.  Tells you who never was the favorite child, huh?  *LOL*

 

Oh, well...

 

Life marches on, and we just have to stay in formation, don't we?

 

Jannis

Daughter of , 82

End stages of LBD