What Is It Like?

[Guest guest]

Hello all,

I would like to share a letter my sister sent out today to me and

our three siblings. It's in regard to our Mom who has had a LBD

diagnosis since 1999. I live two hours away from Mom and I guess I

just was wondering how we'll know that she's at the end. I want to

be there at that moment and yet I worry... what will it be like for

her to die from this disease? Have those of you who have been in

this group for a while seen any commonality in your experiences of

the actual moment of passing? Any advice would be very much

appreciated.

Thank you.

Anne

" This is not an easy letter to write, but I do think it is

important. When I was speaking to Dr. M, he kept referring to

Mom's condition as " end stage dementia " . I finally asked him what

exactly this meant and he responded with " this will most likely be

fatal within 1 to 6 months " . I asked Dr. W what she thought and

she told me if Mom has another infection such as pneumonia or

bladder we could be looking at months. I then went on the computer

and looked up end stage dementia as well as Lewy Body Dementia and

these sites really described exactly what is happening to Mom right

now.

Bill, and Josie attended the training/evaluation with Mom on

Saturday. Although the suction machine hadn't arrived yet, she gave

them a run down on how to use it. She warned this could make Mom

vomit and told them how to handle it. A physical therapist came on

Monday and stretched Mom and said she looked good and is not

contracting. Medicare will pay for 3-4 more visits. A nurse also

came out and put two duoderm pads on Mom's pressure sores which she

will return to change in 3 days. She also suggested Mom have a

catheter to avoid any wetness, this is most likely why her sores

healed in the hospital and were re opened two days after returning

home. Mom is sleeping a lot and not eating very well. I believe

hospice can be brought in when Mom stops eating.

I spoke with Fr. today and asked him to give Mom the anointing

of the sick and a small speck of communion. He was very kind and

said he would be there within 20 minutes. Mom has been on the

prayer list at my church for over a month.

Bill has decided to stop his duties as Mom's caregiver. He is very

willing to continue to help with doctors appointments, visiting and

errands; but watching this decline has become too difficult for him.

, I would like to send you a check so you have the ability to

fly down to see Mom whenever you like. I will check what no advance

notice airfare would cost from Portland to LA or Burbank and send

you a check. I just need a verification of your address.

I also want to apologize for anything I have said or done to hurt

any of you. I want to clear the air and be able to stand bedside

with all my siblings in peace, supporting and loving Mom as she

enters Heaven. I can't imagine a more spiritual time than when God

calls Mom's soul to be with Him. We would be privileged to be a

part of this and it would honor Mom if we could do it peacefully.

Maura