Re: visited Mom today

[Guest guest]

Dear Debbie:

It is so difficult to see our LO's going this way. I believe that they can

understand more than they can communicate. I always felt that my dad was

trapped in his body. He could not make the words, but he understood. If we

asked

him if he knew what we were saying he cold nod yes. Whenever he tried to talk

to us and we tried to guess and guessed wrong he would say no. Then he would

get extremelly frustrated and give up.

They really like to hear about our love for them. You are doing the right

thing by talking to your mom and telling her about your love for her. Tell her

stories about the grandchildren. They seem to be very in tune with their

accomplishments. I would not say much about how you miss her, it may make her

sad. You may remind her of all the good times and the joys you shared. Take

the

lead on keeping everything in a mood of enjoying the precious time you have

together. Give her a message of strength and love. That she gave you all you

need to go on, that you will take care of her needs now and she does not have

to worry about you, you family and your future, and you will be there to look

out for her and be with her as much as you can.

You are a very loving daughter and I am sure your mom appreciates all you do

for her. I lost my dad in August. He had a stroke 5 weeks before he died and

everything went so fast. Before the stroke he was ambulatory, talking and

making sense most of the time. In 3 weeks he was in a coma, came back and then

his body really weakened and he passed in the evening. We weren't there for

him. He knew what we were doing for him and asked for what he wanted as long

as he could. I am sure your mom is aware of your presence, hears you and can

make sense of most of what you say. They just tend to drift off and wake up

all the time. God bless you all, take care, hugs,

Josie

[Guest guest]

Debbie,

My heart is going out to you and your family. Your post made me very sad.

I am sending you a huge comforting hug and much strength.

Please check in with us periodically so that we know how it goes for you and

so that we can give you buckets of support.

Courage

visited Mom today

>

>

>I saw my Mom today. her eyes were open when I got there and she seemed to

be awake and maybe recognized me? she seemed like she was trying to talk but

all that came out was " ahhhhhhh " it was sad to see but I'm glad she was at

least awake enough to give me that...hardly anyone has seen her awake in so

long. I told her how much I loved her (I always do) and how much I missed

her and not being able to do all the things we all used to do

together....vacations, shopping, chatting , baking , just telling stories

etc....that I wished she could be there to play with the kids or just watch

them do the things they do. I told her I wished she could be there to help

me buy cute things for Meghan and help me dress her up (she LOVED putting me

in dresses etc when I was little and I remember her being upset when I got

old enough to say " no more dresses " and ruined her fun!)

>

> I also told her that although we all missed having her with us SO much

that we were doing ok (I certainly can't say I " m doing GREAT) and that we

wanted her to be ok and that if there was some place she needed to go now to

be more comfortable that we'd be ok, that she didn't need to worry about us.

I've heard stories of loved ones staying because they felt they needed to

be there for the people around them. (Donna from this group had also sent me

some articles on " end of life " etc) I just don't want her to be scared or

suffering and it's so hard to tell what she's feeling/thinking. I was a

sobbing wreck by the time I left. She seemed to be back sleeping by the time

I got most of that out, but would open her eyes each time I " d kiss her

goodbye, so I hope she heard some of it. so hard to tell if she understands

what we tell her or even knows us..? I try to talk with the assumption that

some of it is getting through . I truly believe that it is...I want her to

know that we're there with her and she's not alone. I'm going to visit her

again this week during the morning (typically this used to be her " best "

most alert time) when my son Ben is in preschool, then I'll only have my 21

month old with me.

>

>thanks for listening.

>

>Debbie

>

>PS I dont' post here much but I do read through your posts in the digests.

I know there seem to be more LO's in the early stages of this terrible

disease than the point where my Mom is. My Mom was diagnosed with LBD

about 1 1/2 yrs ago but really started showing signs that something wasn't

right about 5 yrs ago this Spring. Her rapid decline started just after my

DD was born so that will be 2 yrs this May/June.

>

>

>

[Guest guest]

Hello Debbie,

I have thought of your message all day. I truly believe that your

Mom knowes what you are saying. What a wonderful message and gift

for you to give your Mom. I know how hard it must be with small

children for you to deal with this. Eight years ago, my son was 28

days old and my Dad had a brain anyrism (sp?). It took all of my

strength. He eventually recoverd and now has LBD. My kids are now 8

and 6 (identical twin girls). I think you did the right thing and I

look up to you. I hope that I have your strength and courage once my

Dad is at the latter stage. My family has never been good at

expressing ourselves.

Robin

---

In LBDcaregivers , " Debbie " <dega.greene@v...> wrote:

>

>

> I saw my Mom today. her eyes were open when I got there and she

seemed to be awake and maybe recognized me? she seemed like she was

trying to talk but all that came out was " ahhhhhhh " it was sad to

see but I'm glad she was at least awake enough to give me

that...hardly anyone has seen her awake in so long. I told her how

much I loved her (I always do) and how much I missed her and not

being able to do all the things we all used to do

together....vacations, shopping, chatting , baking , just telling

stories etc....that I wished she could be there to play with the

kids or just watch them do the things they do. I told her I wished

she could be there to help me buy cute things for Meghan and help me

dress her up (she LOVED putting me in dresses etc when I was little

and I remember her being upset when I got old enough to say " no more

dresses " and ruined her fun!)

>

> I also told her that although we all missed having her with us SO

much that we were doing ok (I certainly can't say I " m doing GREAT)

and that we wanted her to be ok and that if there was some place she

needed to go now to be more comfortable that we'd be ok, that she

didn't need to worry about us. I've heard stories of loved ones

staying because they felt they needed to be there for the people

around them. (Donna from this group had also sent me some articles

on " end of life " etc) I just don't want her to be scared or

suffering and it's so hard to tell what she's feeling/thinking. I

was a sobbing wreck by the time I left. She seemed to be back

sleeping by the time I got most of that out, but would open her eyes

each time I " d kiss her goodbye, so I hope she heard some of it. so

hard to tell if she understands what we tell her or even knows us..?

I try to talk with the assumption that some of it is getting

through . I truly believe that it is...I want her to know that we're

there with her and she's not alone. I'm going to visit her again

this week during the morning (typically this used to be her " best "

most alert time) when my son Ben is in preschool, then I'll only

have my 21 month old with me.

>

> thanks for listening.

>

> Debbie

>

> PS I dont' post here much but I do read through your posts in the

digests. I know there seem to be more LO's in the early stages of

this terrible disease than the point where my Mom is. My Mom was

diagnosed with LBD about 1 1/2 yrs ago but really started showing

signs that something wasn't right about 5 yrs ago this Spring. Her

rapid decline started just after my DD was born so that will be 2

yrs this May/June.

>

>

>