Jim

[Guest guest]

I'm on that emotional roller coaster again.

I went in early to visit Jim, they did have him out of bed in his wheelchair,

but he looked horrible. He has lost so much weight. The nurses say he isn't

eating and having a hard time swallowing. I bring him food everyday and let him

eat when he wakes up. He eats for me, but I do think that he is asperating it. I

usually just bring in thick soups now. He then feels sick and wants to vomit,

but doesn't.

He told me today he is dying and that he thought he was going to die

yesterday. His eyes are so red on the lids and inside and they are tearing all

the time. He does have Blepheritis, but I think this is something different. He

says his eyes hurt and his eye medication is not working for him. He is talking

more to me than in a long time.

He is apologizing for being sick, which broke my heart. I told him it's Lewy

Body and not his fault that he is so sick. I think he forgot about Lewy Body and

was somehow relieved to think that he wasn't the cause of being sick. He smiled.

He still has all that congestion in his chest, it sounds awful. Poor guy.

I think I have to come to accept that things may not go so well for Jim this

time. I had high hopes that he would come out of this. As Sandie has said,

" Where there is life, there is hope. " I'm not giving up on him, but I think I

have to be realistic that he might not make it, since he seems to have a sense

of dying too.

I feel so sad for Jim, but he told me today how much he appreciates all that I

have done for him and the fact that he has noticed this and let me know made my

heart soar. It is like his mind has become so clear suddenly.

It is like everyone has mentioned here, that they know what is going on with

them and around them. How sad that they can feel all this happening to them. I

wish he did not have to suffer and I hope he is not scared. I don't think he is

scared, he doesn't show it if he is. He is more concerned about me. What a sweet

heart to be concerned about me at this point.

Well, guess I am venting and needing support at the same time. I am so mad at

this dreaded disease and what it is doing to Jim and me.

Thanks for being here and listening. Jan

__________________________________________________

[Guest guest]

Oh Janet....how I wish it could be different. I'm so sorry he is

miserable...if he truly feels awful...it must be time. It's hard for

you but now comes the part where you have to except his thoughts about

passing. I know how you feel...I know how you feel...so sad but soon

he will be free. Carol sent me a beautiful piece on dying...I'll go

see if I can find it. I wish we could be there with you....but you

know we are all there with you...on your shoulder and near your heart.

Sara in NC

[Guest guest]

Janet,

This e mail is so incredibly sad.

I will pray for you and your husband., for good

outcome.

The fact that even in such bad health that he is

in, he has been able to communicate so much.,

to thank you, to know things are not looking good for

him.

My mother communicating skills would not allow her

to communicate that well even if she wanted to.

Hugs

Maggie

--- Janet Colello wrote:

> I'm on that emotional roller coaster again.

> I went in early to visit Jim, they did have him

> out of bed in his wheelchair, but he looked

> horrible. He has lost so much weight. The nurses say

> he isn't eating and having a hard time swallowing. I

> bring him food everyday and let him eat when he

> wakes up. He eats for me, but I do think that he is

> asperating it. I usually just bring in thick soups

> now. He then feels sick and wants to vomit, but

> doesn't.

> He told me today he is dying and that he thought

> he was going to die yesterday. His eyes are so red

> on the lids and inside and they are tearing all the

> time. He does have Blepheritis, but I think this is

> something different. He says his eyes hurt and his

> eye medication is not working for him. He is talking

> more to me than in a long time.

> He is apologizing for being sick, which broke my

> heart. I told him it's Lewy Body and not his fault

> that he is so sick. I think he forgot about Lewy

> Body and was somehow relieved to think that he

> wasn't the cause of being sick. He smiled.

> He still has all that congestion in his chest, it

> sounds awful. Poor guy.

> I think I have to come to accept that things may

> not go so well for Jim this time. I had high hopes

> that he would come out of this. As Sandie has said,

> " Where there is life, there is hope. " I'm not

> giving up on him, but I think I have to be realistic

> that he might not make it, since he seems to have a

> sense of dying too.

> I feel so sad for Jim, but he told me today how

> much he appreciates all that I have done for him and

> the fact that he has noticed this and let me know

> made my heart soar. It is like his mind has become

> so clear suddenly.

> It is like everyone has mentioned here, that they

> know what is going on with them and around them. How

> sad that they can feel all this happening to them. I

> wish he did not have to suffer and I hope he is not

> scared. I don't think he is scared, he doesn't show

> it if he is. He is more concerned about me. What a

> sweet heart to be concerned about me at this point.

> Well, guess I am venting and needing support at

> the same time. I am so mad at this dreaded disease

> and what it is doing to Jim and me.

> Thanks for being here and listening. Jan

>

>

> __________________________________________________

>

[Guest guest]

Jan,

I just can't believe you don't have some way to contact Kaiser! It isn't alway

going to be during the week and at their convience that things happen.

I misunderstand your last message with the " when he was at home " I was thinking

I missed something. Sorry.

I hope there is a way to get to Hospice. It will make him comfortable if you

decide to do that. If you can't call Kaiser, Hospice should be able to do so.

Or the nh for that matter.

I am giving lots of big hugs from here and sending them off to you.

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.

Re: Jim

Janet,

This e mail is so incredibly sad.

I will pray for you and your husband., for good

outcome.

The fact that even in such bad health that he is

in, he has been able to communicate so much.,

to thank you, to know things are not looking good for

him.

My mother communicating skills would not allow her

to communicate that well even if she wanted to.

Hugs

Maggie

--- Janet Colello wrote:

> I'm on that emotional roller coaster again.

> I went in early to visit Jim, they did have him

> out of bed in his wheelchair, but he looked

> horrible. He has lost so much weight. The nurses say

> he isn't eating and having a hard time swallowing. I

> bring him food everyday and let him eat when he

> wakes up. He eats for me, but I do think that he is

> asperating it. I usually just bring in thick soups

> now. He then feels sick and wants to vomit, but

> doesn't.

> He told me today he is dying and that he thought

> he was going to die yesterday. His eyes are so red

> on the lids and inside and they are tearing all the

> time. He does have Blepheritis, but I think this is

> something different. He says his eyes hurt and his

> eye medication is not working for him. He is talking

> more to me than in a long time.

> He is apologizing for being sick, which broke my

> heart. I told him it's Lewy Body and not his fault

> that he is so sick. I think he forgot about Lewy

> Body and was somehow relieved to think that he

> wasn't the cause of being sick. He smiled.

> He still has all that congestion in his chest, it

> sounds awful. Poor guy.

> I think I have to come to accept that things may

> not go so well for Jim this time. I had high hopes

> that he would come out of this. As Sandie has said,

> " Where there is life, there is hope. " I'm not

> giving up on him, but I think I have to be realistic

> that he might not make it, since he seems to have a

> sense of dying too.

> I feel so sad for Jim, but he told me today how

> much he appreciates all that I have done for him and

> the fact that he has noticed this and let me know

> made my heart soar. It is like his mind has become

> so clear suddenly.

> It is like everyone has mentioned here, that they

> know what is going on with them and around them. How

> sad that they can feel all this happening to them. I

> wish he did not have to suffer and I hope he is not

> scared. I don't think he is scared, he doesn't show

> it if he is. He is more concerned about me. What a

> sweet heart to be concerned about me at this point.

> Well, guess I am venting and needing support at

> the same time. I am so mad at this dreaded disease

> and what it is doing to Jim and me.

> Thanks for being here and listening. Jan

>

>

> __________________________________________________

>

[Guest guest]

Dear Jan,

Sometimes when things are stabilized I feel so strong, but it is

amazing how quickly things change and how fragile life is.

I'm glad that Jim has been able to share his thoughts with you and

you know how much he appreciates and loves you. Still it is

heartbreaking.

I wish you strength in the days to come. I hope you can get Hospice

to help you both in this part of your journey together. I'm sure

that Jim is comforted just knowing how much you care for him.

I will keep you both in my prayers.

Daughter of Bill, 91

>

> I'm on that emotional roller coaster again.

[Guest guest]

Jan,

My heart breaks for you. I know this is a very difficult time for you. I'm

praying that God will come along side of you and give you strength and peace to

handle whatever happens. You need all the love and support you can get during

this roller coaster ride.

Margee

[Guest guest]

Jan -- As always, you & Jim are in my thoughts & prayers. I'm glad that

you are having this time with Jim. I'm also glad that Jim is able to

communicate with you how he feels.

[Guest guest]

I might have to get the nh home Hospice, but then I don't think I can bring Jim

home, he will have to stay there, but it is better for his comfort whatever

happens I suppose.

Donna Mido wrote: Jan,

I just can't believe you don't have some way to contact Kaiser! It isn't alway

going to be during the week and at their convience that things happen.

I misunderstand your last message with the " when he was at home " I was thinking

I missed something. Sorry.

I hope there is a way to get to Hospice. It will make him comfortable if you

decide to do that. If you can't call Kaiser, Hospice should be able to do so. Or

the nh for that matter.

I am giving lots of big hugs from here and sending them off to you.

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.

Re: Jim

Janet,

This e mail is so incredibly sad.

I will pray for you and your husband., for good

outcome.

The fact that even in such bad health that he is

in, he has been able to communicate so much.,

to thank you, to know things are not looking good for

him.

My mother communicating skills would not allow her

to communicate that well even if she wanted to.

Hugs

Maggie

--- Janet Colello wrote:

> I'm on that emotional roller coaster again.

> I went in early to visit Jim, they did have him

> out of bed in his wheelchair, but he looked

> horrible. He has lost so much weight. The nurses say

> he isn't eating and having a hard time swallowing. I

> bring him food everyday and let him eat when he

> wakes up. He eats for me, but I do think that he is

> asperating it. I usually just bring in thick soups

> now. He then feels sick and wants to vomit, but

> doesn't.

> He told me today he is dying and that he thought

> he was going to die yesterday. His eyes are so red

> on the lids and inside and they are tearing all the

> time. He does have Blepheritis, but I think this is

> something different. He says his eyes hurt and his

> eye medication is not working for him. He is talking

> more to me than in a long time.

> He is apologizing for being sick, which broke my

> heart. I told him it's Lewy Body and not his fault

> that he is so sick. I think he forgot about Lewy

> Body and was somehow relieved to think that he

> wasn't the cause of being sick. He smiled.

> He still has all that congestion in his chest, it

> sounds awful. Poor guy.

> I think I have to come to accept that things may

> not go so well for Jim this time. I had high hopes

> that he would come out of this. As Sandie has said,

> " Where there is life, there is hope. " I'm not

> giving up on him, but I think I have to be realistic

> that he might not make it, since he seems to have a

> sense of dying too.

> I feel so sad for Jim, but he told me today how

> much he appreciates all that I have done for him and

> the fact that he has noticed this and let me know

> made my heart soar. It is like his mind has become

> so clear suddenly.

> It is like everyone has mentioned here, that they

> know what is going on with them and around them. How

> sad that they can feel all this happening to them. I

> wish he did not have to suffer and I hope he is not

> scared. I don't think he is scared, he doesn't show

> it if he is. He is more concerned about me. What a

> sweet heart to be concerned about me at this point.

> Well, guess I am venting and needing support at

> the same time. I am so mad at this dreaded disease

> and what it is doing to Jim and me.

> Thanks for being here and listening. Jan

>

>

> __________________________________________________

>

[Guest guest]

Hi Margee,

Good to hear from you. This whole thing with Jim has my spirits up one day

that I might see some positive things going on with him and then down a day

later, it's like he is set back and seems so helpless and needy. How he can

change so drastically. One day he'll be sitting up in his wheelchair and eating

some food and the next day not able to sit up at all with no appetite for food.

And helpless and needy.

I have a flight scheduled for Houston on January 10, but I may cancel it if

Jim does not seem any better by then. I was going to visit my cousins and then

onto Florida for the LBD Symposium, but I will cancel that too. Hope you are

well. HAPPY NEW YEAR! Jan

wrote:

Jan,

My heart breaks for you. I know this is a very difficult time for you. I'm

praying that God will come along side of you and give you strength and peace to

handle whatever happens. You need all the love and support you can get during

this roller coaster ride.

Margee

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