Re: Re: Hi All

[Guest guest]

Thank you Leona,

I have read and tried to prepare myself for this time, but I am feeling helpless

and there is nothing I can do, but be there for Jim. It's very hard to watch

him

shut down. He has lost so much weight, I don't think there is enough strength in

him to fight this anymore. He has been such a fighter and overcame so many

obstacles that could have brought  him down. It's hard to see him this way. I

was with him until midnight last evening/this morning.

It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic as

of last night that covers both, but he would not swallow the medication. Leona,

only a week ago he was eating his entire meals. I don't know if it is false

hope, but I am wishing that it is just that he feels so lousy he won't swallow,

but if he gets some antibiotic, he will start to feel better and swallow again,

but maybe I am just having false hope and this is it. I just can't get a grip on

this. No matter how much I have prepared for this moment, it is like I am having

a bad dream. Jim told me he was dying last night in a whispery voice. I feel

numb just thinking about the loss. A lab tech was in and did a blood test on Jim

yesterday to see if there is an infection in the blood. Jim is my hero, he is so

brave. This dreaded disease tears me apart.

I need to hear from people like you that have gone through this and survived. I

just can't imagine my life without Jim, but I know I will get through this and

move on, I just don't know how yet.

Thank you so much, I appreciate hearing from you.

Love and Hugs,

Jan

Leona, this is so true:

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

to live without. "

________________________________

To: LBDcaregivers

Sent: Sat, January 15, 2011 10:27:52 AM

Subject: Re: Hi All

 

Jan: I have been where you are and feel that I know what you are going

through. My oldest daughter told me the other day that she thought Dad knew

that he was ready to go and just quit eating. I felt it was just the course

of the LBD and it was his time to go. Either way, I am sure Ray wouldn't

have wanted to continue any longer in the shape he was in. Comfort yourself

with the knowledge that you have done every thing you could to care for him,

show your love for him in every way you could and advocated for him

everytime the opportunity arose. We lived our vows to the end. We also

realize that he will be in a better place and when we meet them again, they

will no longer be sick! As you have had the strength to suffer along with

him every step of the way, you will find the strength to find your way

through the end time. It has been two years this spring and the tears came

back as I read your post because the things you are seeing, are the things I

saw as he faded away. Now, I think often of the things he said and did. I

smile often as I tell a story or remember a good time we had. You may find

as I did, that I did a lot of my grieving long before he died. Once I

realized there were no miracle drugs, or treatments or cures --that he was

on steep slope fading away, I cried and grieved him 6 months before he died.

I did not know that is what was going on, but afterward, I realized and

really handled everything very well. Jan, please know that you and Jim are

in my prayers and thoughts as you continue down this difficult road. God

Bless you both!! 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]

Jan,

Can you get them to bring in a speech pathologist asap to help figure out how

Jim can swallow (and eat and drink) more safely? Or has this already been done?

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Janet Colello

Sent: Saturday, January 15, 2011 11:16 AM

To: LBDcaregivers

Subject: Re: Re: Hi All

Thank you Leona,

I have read and tried to prepare myself for this time, but I am feeling helpless

and there is nothing I can do, but be there for Jim. It's very hard to watch him

shut down. He has lost so much weight, I don't think there is enough strength in

him to fight this anymore. He has been such a fighter and overcame so many

obstacles that could have brought him down. It's hard to see him this way. I

was with him until midnight last evening/this morning.

It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic as

of last night that covers both, but he would not swallow the medication. Leona,

only a week ago he was eating his entire meals. I don't know if it is false

hope, but I am wishing that it is just that he feels so lousy he won't swallow,

but if he gets some antibiotic, he will start to feel better and swallow again,

but maybe I am just having false hope and this is it. I just can't get a grip on

this. No matter how much I have prepared for this moment, it is like I am having

a bad dream. Jim told me he was dying last night in a whispery voice. I feel

numb just thinking about the loss. A lab tech was in and did a blood test on Jim

yesterday to see if there is an infection in the blood. Jim is my hero, he is so

brave. This dreaded disease tears me apart.

I need to hear from people like you that have gone through this and survived. I

just can't imagine my life without Jim, but I know I will get through this and

move on, I just don't know how yet.

Thank you so much, I appreciate hearing from you.

Love and Hugs,

Jan

Leona, this is so true:

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

to live without. "

________________________________

From: Leona Chereshnoski <lchere@... <mailto:lchere%40hughes.net> >

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Sent: Sat, January 15, 2011 10:27:52 AM

Subject: Re: Hi All

Jan: I have been where you are and feel that I know what you are going

through. My oldest daughter told me the other day that she thought Dad knew

that he was ready to go and just quit eating. I felt it was just the course

of the LBD and it was his time to go. Either way, I am sure Ray wouldn't

have wanted to continue any longer in the shape he was in. Comfort yourself

with the knowledge that you have done every thing you could to care for him,

show your love for him in every way you could and advocated for him

everytime the opportunity arose. We lived our vows to the end. We also

realize that he will be in a better place and when we meet them again, they

will no longer be sick! As you have had the strength to suffer along with

him every step of the way, you will find the strength to find your way

through the end time. It has been two years this spring and the tears came

back as I read your post because the things you are seeing, are the things I

saw as he faded away. Now, I think often of the things he said and did. I

smile often as I tell a story or remember a good time we had. You may find

as I did, that I did a lot of my grieving long before he died. Once I

realized there were no miracle drugs, or treatments or cures --that he was

on steep slope fading away, I cried and grieved him 6 months before he died.

I did not know that is what was going on, but afterward, I realized and

really handled everything very well. Jan, please know that you and Jim are

in my prayers and thoughts as you continue down this difficult road. God

Bless you both!! 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]

Hi Dorothy,

The speech pathologist already evaluated Jim last summer and put him on pureed

foods, before that he was on mechanical soft foods. He was already on thickened

liquids. They had a meeting with me last week and said to get him a sippy cup,

so he won't aspirate, but he had a hard time with a sippy cup, because it is

also made not to spill when it tips over so if it is tipped up to drink, he

can't get anything out of it unless he sucks on the tip, but he doesn't suck. I

went back to the old way using an actual cup, but now he is not drinking or

eating. He either holds it in his mouth or spits it out. I can't get it into

him.

Jan

________________________________

To: LBDcaregivers

Sent: Sat, January 15, 2011 2:24:20 PM

Subject: RE: Re: Hi All

 

Jan,

Can you get them to bring in a speech pathologist asap to help figure out how

Jim can swallow (and eat and drink) more safely? Or has this already been done?

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Janet Colello

Sent: Saturday, January 15, 2011 11:16 AM

To: LBDcaregivers

Subject: Re: Re: Hi All

Thank you Leona,

I have read and tried to prepare myself for this time, but I am feeling helpless

and there is nothing I can do, but be there for Jim. It's very hard to watch him

shut down. He has lost so much weight, I don't think there is enough strength in

him to fight this anymore. He has been such a fighter and overcame so many

obstacles that could have brought him down. It's hard to see him this way. I

was with him until midnight last evening/this morning.

It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic as

of last night that covers both, but he would not swallow the medication. Leona,

only a week ago he was eating his entire meals. I don't know if it is false

hope, but I am wishing that it is just that he feels so lousy he won't swallow,

but if he gets some antibiotic, he will start to feel better and swallow again,

but maybe I am just having false hope and this is it. I just can't get a grip on

this. No matter how much I have prepared for this moment, it is like I am having

a bad dream. Jim told me he was dying last night in a whispery voice. I feel

numb just thinking about the loss. A lab tech was in and did a blood test on Jim

yesterday to see if there is an infection in the blood. Jim is my hero, he is so

brave. This dreaded disease tears me apart.

I need to hear from people like you that have gone through this and survived. I

just can't imagine my life without Jim, but I know I will get through this and

move on, I just don't know how yet.

Thank you so much, I appreciate hearing from you.

Love and Hugs,

Jan

Leona, this is so true:

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

to live without. "

________________________________

From: Leona Chereshnoski <lchere@... <mailto:lchere%40hughes.net> >

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Sent: Sat, January 15, 2011 10:27:52 AM

Subject: Re: Hi All

Jan: I have been where you are and feel that I know what you are going

through. My oldest daughter told me the other day that she thought Dad knew

that he was ready to go and just quit eating. I felt it was just the course

of the LBD and it was his time to go. Either way, I am sure Ray wouldn't

have wanted to continue any longer in the shape he was in. Comfort yourself

with the knowledge that you have done every thing you could to care for him,

show your love for him in every way you could and advocated for him

everytime the opportunity arose. We lived our vows to the end. We also

realize that he will be in a better place and when we meet them again, they

will no longer be sick! As you have had the strength to suffer along with

him every step of the way, you will find the strength to find your way

through the end time. It has been two years this spring and the tears came

back as I read your post because the things you are seeing, are the things I

saw as he faded away. Now, I think often of the things he said and did. I

smile often as I tell a story or remember a good time we had. You may find

as I did, that I did a lot of my grieving long before he died. Once I

realized there were no miracle drugs, or treatments or cures --that he was

on steep slope fading away, I cried and grieved him 6 months before he died.

I did not know that is what was going on, but afterward, I realized and

really handled everything very well. Jan, please know that you and Jim are

in my prayers and thoughts as you continue down this difficult road. God

Bless you both!! 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]

Lorraine,

Though you have not been through the experience I am having, you are making it

on the other side of Lewy. I hope I can have that strength. I have had many

turning points in my life and I know I have the strength to get through them,

but I just am not feelin' it at this time.

Thank you for the encouragement. Just hearing from people that have been there,

done that and got through it is awesome. It gives me encouragement, thank you

for being here for me.

Jan

________________________________

To: LBDcaregivers

Sent: Sat, January 15, 2011 9:43:37 PM

Subject: Re: Hi All

 

Jan, you are the picture of courage and perseverance. I lost my husband suddenly

so I have not had the same experience but I am making it on the other side of

Lewy.

Lorraine

>

> Dear friends,

> I started in this group in 2003 and was a regular until 2006 when Jim went

into

>

> a nursing home. Some of you know me and some of you don't. I answer a few

posts

>

> now and then and I lurk and try to keep up on the latest news.

> Jim is not doing well. He has swallowing issues and has stopped eating and has

> lost a lot of weight. He also has horrible congestion. I hate winters and

> sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but

>they

>

> are not sure. They faxed the information to the doctor. I have a feeling it

>will

>

> not be treated since Jim put in his Health Directive many years ago when he

was

>

> in good health and sound mind that he did not want to be treated for Pneumonia

> if he had severe dementia and it was to prolong his life and last May

when Jim

> was in the hospital with Aspiration Pneumonia, it was treated and Jim's

>daughter

>

> with the POA for Jim's health and the nurse decided not to treat it next

> time. Jim's daughter usually follows his wishes in the Health Directive.

I have

>

> been able to request treatment in the past for Jim, but his daughter has the

> last word on the decisions. 

> I will call in Hospice if it will not be treated.

> My emotions are all over the place seeing Jim like this. I have prepared and

> known his time would come, but truly I don't know how you can prepare for

> something like this. I will be scared and lost without him. How do you get

> through it?! I want to hang onto him, but he is losing the battle, I can sense

> it. He has been a fighter and come through so many times that I thought I was

> going to lose him, but this time I don't think there is any  turning back. He

>is

>

> very weak from all the loss of weight.

> Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into

> full bloom in 2000, the neurologist was not familiar with Lewy Body at that

> time.

> For those that remember I had an interview back in August by an interviewer

for

>

> a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with

the

> article this month, but it is in Dutch, because the interviewer was from

> Amsterdam. I have a resident's daughter at the nursing home translating it for

> me, they are from Amsterdam. It is 3 pages long. I tried the online

translation

>

> to English, but the English is very poor that it is almost as bad as trying to

> read the Dutch. Hahahaha  After it is translated, I will scan a copy to

>

>

> and hopefully, she can get it across to all of you.

> Last July the interviewer contacted the LBDA, as you might remember, and

>

> and put the word out that he would be in the San Francisco Bay Area

>and

>

> needed someone that he could interview in August on Capgras for the

> " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted

> him and said I could do it, so he met me at the nursing home where my husband

>is

>

> residing. The interview was 2  1/2 hours long. He was very easy to talk to,

he

> had his tape recorder and asked questions and I would answer and ramble on.

LOL

>

> I told him Capgras was a symptom within Lewy Body that some have and some

> don't and that it doesn't vary that much or happen everyday and that I could

>not

>

> make a page for him in the magazine with just Capgras alone. I told him about

> Lewy Body too, so he could connect it with Capgras, but I am not sure how the

> article came out since he was assigned to do Capgras only and I have a feeling

> he made some of the Lewy Body issues into Capgras issues to fill the pages.

>I'll

>

> know after it is translated how he told the story.

> Jan Colello

> San Francisco Bay Area, California

> husband, Jim dx w/LBD 2003

>

>

>

>

>

[Guest guest]

I am so appreciative and feel the strength you all are giving me to make it

through this.

Thank you so much for being here.

Hugs,

Jan

________________________________

To: LBDcaregivers

Sent: Sun, January 16, 2011 10:16:33 AM

Subject: Re: Hi All

 

Jan, it is obvious how many here are with you in spirit. Hold onto that

knowledge. And please take care of you too as you will need much strength

getting through this terrible time.

>

> Hi Sandie,

> I left Jim at midnight tonight and haven't gone to bed yet and it is 5:30AM. I

> can't sleep, I am so worried about Jim. Sandie, Jim is so weak, he has no fat

>on

>

> him, he is all bones. I can't even describe it, it is so sad to see. I am in

> such deep sorrow. Jim has always been a fighter and bounced back many times

>when

>

> I thought he was down, but this time I hate what I am sensing. He has never

>been

>

> this weak or all bones, he has always had some amount of strength, but the

> strength is not there now. He is giving up. I panicked tonight at the nursing

> home. He would not wake up and did not respond when I yelled his name over

and

>

> over. Even in his down times before when he heard my voice, he would respond

in

>

> some way by opening his eyes or moving a hand, but nothing this time. I didn't

> want to leave him tonight.

> I am confused, are you saying to give Jim an empty cup or spoon/fork? He is so

> weak, I don't think he would hold either one. I can try it today when I visit.

>

> Tonight and last night, he would not swallow his antibiotic, but I did get him

> to swallow half of it on both nights. Do you think half is enough to help him

a

>

> little. He would fall asleep and not finish it. I give him a little at a time,

> so he doesn't hold it in his mouth or spit it out. He seems to swallow if a

> little bit at a time is given. It takes so long with a little at a time that

he

>

> falls asleep before it is gone. Maybe there is hope with only half given each

> night. With LBD Less is Best : ) Oh, I wish!!!

>

> I was so %^ & **(((* & & mad tonight. The floor nurse told me they gave Jim an

> ennama that morning. The first few years they were giving Jim an ennema and

>they

>

> flushed everything he had out of him and now he is so thin, any nutrients he

>had

>

> in him is gone.

> In the beginning years, they flushed the sodium out of him with ennamas and he

> was hospitalized with hyponatremia a sodium deficiency. Arghhhhhhhh!!!!! I

> couldn't believe they would do that to him. I requested that they only use a

> suppository after that and it has always worked for him, so I don't understand

> this making him have diarrhea and not having anything in him when he is

already

>

> emaciated.

>

> Well, now it is 6AM, I should just stay up and surprise them early today at

the

>

> nursing home. I can hardly keep my eyes open now though. I think I need to get

> some sleep.

> Thanks Sandie for your suggestion and the prayers. I know from experience that

> the prayers are answered and I am so thankful for them.

> Huge Hugs,

> Jan

>

>

>

>

> ________________________________

>

> To: LBDcaregivers

> Sent: Sun, January 16, 2011 5:26:09 AM

> Subject: Re: Re: Hi All

>

>  

> Jan- Have you tried offering an empty utensil between bites or even a couple

> times in a row. Even an empty glass after liquids are offered. Sometimes this

> triggers swallowing. Although we lost parents and not a spouse, we were both

> caregivers in the LBD journey. You are a strong person and have many people

> sending prayers for more strength. I am sure your bag of goodies has brought

>Jim

>

> through many struggles before and will help him as he goes through these days

> ahead. Your heart is bigger than the state of California and the love you have

> for Jim is an example for the rest of us to follow. I have never forgotten

> hearing Jim's voice when we were in Ann Arbor, Michigan. Almost 3 years later

I

>

> am still grateful you honored us with Jim speaking to us. You are in our

hearts

>

> and prayers, always have been. I have sent up many prayers for you and Jim

>since

>

> reading your post on this thread and will continue to do so. Big hugs from

>Iowa-

>

> S

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

> mum, Jo, (New Zealand) passed from LBD 4-29-07, age 78

>

> ----- Re: Hi All

>

> Jan: I have been where you are and feel that I know what you are going

> through. My oldest daughter told me the other day that she thought Dad knew

> that he was ready to go and just quit eating. I felt it was just the course

> of the LBD and it was his time to go. Either way, I am sure Ray wouldn't

> have wanted to continue any longer in the shape he was in. Comfort yourself

> with the knowledge that you have done every thing you could to care for him,

> show your love for him in every way you could and advocated for him

> everytime the opportunity arose. We lived our vows to the end. We also

> realize that he will be in a better place and when we meet them again, they

> will no longer be sick! As you have had the strength to suffer along with

> him every step of the way, you will find the strength to find your way

> through the end time. It has been two years this spring and the tears came

> back as I read your post because the things you are seeing, are the things I

> saw as he faded away. Now, I think often of the things he said and did. I

> smile often as I tell a story or remember a good time we had. You may find

> as I did, that I did a lot of my grieving long before he died. Once I

> realized there were no miracle drugs, or treatments or cures --that he was

> on steep slope fading away, I cried and grieved him 6 months before he died.

> I did not know that is what was going on, but afterward, I realized and

> really handled everything very well. Jan, please know that you and Jim are

> in my prayers and thoughts as you continue down this difficult road. God

> Bless you both!! 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]

Hi Jan- I am so sorry for what you are seeing and feeling. Feeling like I have

been there, done that. My dad couldn't stand so we never knew what weight he

was down to but my guess what ever bones weighed in a man of his height is what

he weighed in the end. So as I sit here with a visual of my dad my heart breaks

for you. I'm sorry I didn't explain myself very well earlier. When feeding

Jim, offer an empty spoon or fork between bites. As if feeding him food with

nothing on it. I was told that in physical therapy for my dad and it worked

when dad was pooling food or liquids in his mouth. It triggered swallowing. If

Jim is truly not eating anything and has nothing in his mouth then the empty

utensil wouldn't be necessary. Same with a cup. I would give my dad a drink

then would offer an empty cup between drinks. Made my dad swallow what was in

his mouth. Then I got to the point of using a straw. I would plug the end we

usually would drink out of which would keep liquid in the end that was in the

cup. Take it out of the cup and slowly drain it in my dad's mouth, might work

for Jim. There is something powerful in a woman's intuition Jan. I do

appreciate in some of your posts how you are holding onto hope, still. I have

always said as long as there is life, there is hope. I feel if Jim is getting

some of the antibiotic in him it has to be better than none. He isn't using up

energy so what little he is getting has to be helping. That's my opinion

anyhow. I hope you are getting some rest even if it's just relaxing in a chair

with your feet up for a while. Remember you still need to take care of you in

all of this caregiving. We need you to remain healthy!! Big hugs right back,

holding you and Jim close in our hearts and prayers- S

----- Re: Hi All

Jan: I have been where you are and feel that I know what you are going

through. My oldest daughter told me the other day that she thought Dad knew

that he was ready to go and just quit eating. I felt it was just the course

of the LBD and it was his time to go. Either way, I am sure Ray wouldn't

have wanted to continue any longer in the shape he was in. Comfort yourself

with the knowledge that you have done every thing you could to care for him,

show your love for him in every way you could and advocated for him

everytime the opportunity arose. We lived our vows to the end. We also

realize that he will be in a better place and when we meet them again, they

will no longer be sick! As you have had the strength to suffer along with

him every step of the way, you will find the strength to find your way

through the end time. It has been two years this spring and the tears came

back as I read your post because the things you are seeing, are the things I

saw as he faded away. Now, I think often of the things he said and did. I

smile often as I tell a story or remember a good time we had. You may find

as I did, that I did a lot of my grieving long before he died. Once I

realized there were no miracle drugs, or treatments or cures --that he was

on steep slope fading away, I cried and grieved him 6 months before he died.

I did not know that is what was going on, but afterward, I realized and

really handled everything very well. Jan, please know that you and Jim are

in my prayers and thoughts as you continue down this difficult road. God

Bless you both!! 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]

Thank you so much Ron, it really means a lot to hear from you. I so much

appreciate your words. I truly don't know how you all before me got through

this. It's like a nightmare for me and I want to wake up. I'm so unfocused right

now and running in circles. I feel so helpless, there is nothing I can do, but

be there for Jim.

Thanks again!

Jan

________________________________

To: LBDcaregivers

Sent: Sun, January 16, 2011 1:05:33 PM

Subject: Re: Hi All

 

Dear Jan, truly heartbreaking to hear this..You have been a wonderful fighter

for your dear Jim..A true inspiration to us all.Sending prayers up for you and

Jim for strength to endure the coming days and hopes that things turn for the

better.You are in our thoughts Ron

>

> Dear friends,

> I started in this group in 2003 and was a regular until 2006 when Jim went

into

>

> a nursing home. Some of you know me and some of you don't. I answer a few

posts

>

> now and then and I lurk and try to keep up on the latest news.

> Jim is not doing well. He has swallowing issues and has stopped eating and has

> lost a lot of weight. He also has horrible congestion. I hate winters and

> sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but

>they

>

> are not sure. They faxed the information to the doctor. I have a feeling it

>will

>

> not be treated since Jim put in his Health Directive many years ago when he

was

>

> in good health and sound mind that he did not want to be treated for Pneumonia

> if he had severe dementia and it was to prolong his life and last May

when Jim

> was in the hospital with Aspiration Pneumonia, it was treated and Jim's

>daughter

>

> with the POA for Jim's health and the nurse decided not to treat it next

> time. Jim's daughter usually follows his wishes in the Health Directive.

I have

>

> been able to request treatment in the past for Jim, but his daughter has the

> last word on the decisions. 

> I will call in Hospice if it will not be treated.

> My emotions are all over the place seeing Jim like this. I have prepared and

> known his time would come, but truly I don't know how you can prepare for

> something like this. I will be scared and lost without him. How do you get

> through it?! I want to hang onto him, but he is losing the battle, I can sense

> it. He has been a fighter and come through so many times that I thought I was

> going to lose him, but this time I don't think there is any  turning back. He

>is

>

> very weak from all the loss of weight.

> Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into

> full bloom in 2000, the neurologist was not familiar with Lewy Body at that

> time.

> For those that remember I had an interview back in August by an interviewer

for

>

> a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with

the

> article this month, but it is in Dutch, because the interviewer was from

> Amsterdam. I have a resident's daughter at the nursing home translating it for

> me, they are from Amsterdam. It is 3 pages long. I tried the online

translation

>

> to English, but the English is very poor that it is almost as bad as trying to

> read the Dutch. Hahahaha  After it is translated, I will scan a copy to

>

>

> and hopefully, she can get it across to all of you.

> Last July the interviewer contacted the LBDA, as you might remember, and

>

> and put the word out that he would be in the San Francisco Bay Area

>and

>

> needed someone that he could interview in August on Capgras for the

> " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted

> him and said I could do it, so he met me at the nursing home where my husband

>is

>

> residing. The interview was 2  1/2 hours long. He was very easy to talk to,

he

> had his tape recorder and asked questions and I would answer and ramble on.

LOL

>

> I told him Capgras was a symptom within Lewy Body that some have and some

> don't and that it doesn't vary that much or happen everyday and that I could

>not

>

> make a page for him in the magazine with just Capgras alone. I told him about

> Lewy Body too, so he could connect it with Capgras, but I am not sure how the

> article came out since he was assigned to do Capgras only and I have a feeling

> he made some of the Lewy Body issues into Capgras issues to fill the pages.

>I'll

>

> know after it is translated how he told the story.

> Jan Colello

> San Francisco Bay Area, California

> husband, Jim dx w/LBD 2003

>

>

>

>

>

[Guest guest]

Jan I remember when mamma was there and I know there are no words to describe

what you are going through.The grief, sadness, confusion from lost sleep but

mostly the helplessness.Theres no love greater than yours and Jims and you ARE

doing everything you can to make him more comfortible.We cant fix this disease

or take it away and thats something that weighs on us...I hurt with you right

now.We are here for you now and in the coming days just as you have been for so

many of us over the years.I know we had our misunderstandings in the past but

please know your loved and cared for deeply.Sending up prayers and holding you

close in our thoughts. (((((((hugs)))))))))) Ron

________________________________

To: LBDcaregivers

Sent: Sun, January 16, 2011 4:40:50 PM

Subject: Re: Re: Hi All

Thank you so much Ron, it really means a lot to hear from you. I so much

appreciate your words. I truly don't know how you all before me got through

this. It's like a nightmare for me and I want to wake up. I'm so unfocused right

now and running in circles. I feel so helpless, there is nothing I can do, but

be there for Jim.

Thanks again!

Jan

________________________________

To: LBDcaregivers

Sent: Sun, January 16, 2011 1:05:33 PM

Subject: Re: Hi All

Dear Jan, truly heartbreaking to hear this..You have been a wonderful fighter

for your dear Jim..A true inspiration to us all.Sending prayers up for you and

Jim for strength to endure the coming days and hopes that things turn for the

better.You are in our thoughts Ron

>

> Dear friends,

> I started in this group in 2003 and was a regular until 2006 when Jim went

into

>

>

> a nursing home. Some of you know me and some of you don't. I answer a few

posts

>

>

> now and then and I lurk and try to keep up on the latest news.

> Jim is not doing well. He has swallowing issues and has stopped eating and has

> lost a lot of weight. He also has horrible congestion. I hate winters and

> sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but

>they

>

> are not sure. They faxed the information to the doctor. I have a feeling it

>will

>

> not be treated since Jim put in his Health Directive many years ago when he

was

>

>

> in good health and sound mind that he did not want to be treated for Pneumonia

> if he had severe dementia and it was to prolong his life and last May when Jim

> was in the hospital with Aspiration Pneumonia, it was treated and Jim's

>daughter

>

> with the POA for Jim's health and the nurse decided not to treat it next

> time. Jim's daughter usually follows his wishes in the Health Directive. I

have

>

>

> been able to request treatment in the past for Jim, but his daughter has the

> last word on the decisions.

> I will call in Hospice if it will not be treated.

> My emotions are all over the place seeing Jim like this. I have prepared and

> known his time would come, but truly I don't know how you can prepare for

> something like this. I will be scared and lost without him. How do you get

> through it?! I want to hang onto him, but he is losing the battle, I can sense

> it. He has been a fighter and come through so many times that I thought I was

> going to lose him, but this time I don't think there is any turning back. He

>is

>

> very weak from all the loss of weight.

> Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into

> full bloom in 2000, the neurologist was not familiar with Lewy Body at that

> time.

> For those that remember I had an interview back in August by an interviewer

for

>

>

> a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the

> article this month, but it is in Dutch, because the interviewer was from

> Amsterdam. I have a resident's daughter at the nursing home translating it for

> me, they are from Amsterdam. It is 3 pages long. I tried the online

translation

>

>

> to English, but the English is very poor that it is almost as bad as trying to

> read the Dutch. Hahahaha After it is translated, I will scan a copy to

>

>

> and hopefully, she can get it across to all of you.

> Last July the interviewer contacted the LBDA, as you might remember, and

>

>

> and put the word out that he would be in the San Francisco Bay Area

>and

>

> needed someone that he could interview in August on Capgras for the

> " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted

> him and said I could do it, so he met me at the nursing home where my husband

>is

>

> residing. The interview was 2 1/2 hours long. He was very easy to talk to, he

> had his tape recorder and asked questions and I would answer and ramble on.

LOL

>

>

> I told him Capgras was a symptom within Lewy Body that some have and some

> don't and that it doesn't vary that much or happen everyday and that I could

>not

>

> make a page for him in the magazine with just Capgras alone. I told him about

> Lewy Body too, so he could connect it with Capgras, but I am not sure how the

> article came out since he was assigned to do Capgras only and I have a feeling

> he made some of the Lewy Body issues into Capgras issues to fill the pages.

>I'll

>

> know after it is translated how he told the story.

> Jan Colello

> San Francisco Bay Area, California

> husband, Jim dx w/LBD 2003

>

>

>

>

>

[Guest guest]

Thank you, it means so much to me.

Hugs back to you,

Jan

________________________________

To: LBDcaregivers

Sent: Sun, January 16, 2011 2:06:57 PM

Subject: Re: Re: Hi All

 

Jan I remember when mamma was there and I know there are no words to describe

what you are going through.The grief, sadness, confusion from lost sleep but

mostly the helplessness.Theres no love greater than yours and Jims and you ARE

doing everything you can to make him more comfortible.We cant fix this disease

or take it away and thats something that weighs on us...I hurt with you right

now.We are here for you now and in the coming days just as you have been for so

many of us over the years.I know we had our misunderstandings in the past but

please know your loved and cared for deeply.Sending up prayers and holding you

close in our thoughts. (((((((hugs)))))))))) Ron

________________________________

To: LBDcaregivers

Sent: Sun, January 16, 2011 4:40:50 PM

Subject: Re: Re: Hi All

Thank you so much Ron, it really means a lot to hear from you. I so much

appreciate your words. I truly don't know how you all before me got through

this. It's like a nightmare for me and I want to wake up. I'm so unfocused right

now and running in circles. I feel so helpless, there is nothing I can do, but

be there for Jim.

Thanks again!

Jan

________________________________

To: LBDcaregivers

Sent: Sun, January 16, 2011 1:05:33 PM

Subject: Re: Hi All

Dear Jan, truly heartbreaking to hear this..You have been a wonderful fighter

for your dear Jim..A true inspiration to us all.Sending prayers up for you and

Jim for strength to endure the coming days and hopes that things turn for the

better.You are in our thoughts Ron

>

> Dear friends,

> I started in this group in 2003 and was a regular until 2006 when Jim went

into

>

>

>

> a nursing home. Some of you know me and some of you don't. I answer a few

posts

>

>

>

> now and then and I lurk and try to keep up on the latest news.

> Jim is not doing well. He has swallowing issues and has stopped eating and has

> lost a lot of weight. He also has horrible congestion. I hate winters and

> sickness! An X-Ray was taken yesterday and it shows probable pneumonia, but

>they

>

> are not sure. They faxed the information to the doctor. I have a feeling it

>will

>

> not be treated since Jim put in his Health Directive many years ago when he

was

>

>

>

> in good health and sound mind that he did not want to be treated for Pneumonia

> if he had severe dementia and it was to prolong his life and last May when Jim

> was in the hospital with Aspiration Pneumonia, it was treated and Jim's

>daughter

>

> with the POA for Jim's health and the nurse decided not to treat it next

> time. Jim's daughter usually follows his wishes in the Health Directive. I

have

>

>

>

> been able to request treatment in the past for Jim, but his daughter has the

> last word on the decisions.

> I will call in Hospice if it will not be treated.

> My emotions are all over the place seeing Jim like this. I have prepared and

> known his time would come, but truly I don't know how you can prepare for

> something like this. I will be scared and lost without him. How do you get

> through it?! I want to hang onto him, but he is losing the battle, I can sense

> it. He has been a fighter and come through so many times that I thought I was

> going to lose him, but this time I don't think there is any turning back. He

>is

>

> very weak from all the loss of weight.

> Jim was diagnosed in 2003 with Lewy Body Dementia, but it actually came into

> full bloom in 2000, the neurologist was not familiar with Lewy Body at that

> time.

> For those that remember I had an interview back in August by an interviewer

for

>

>

>

> a Dutch magazine on Jim's Capgras Syndrome, the magazine did come out with the

> article this month, but it is in Dutch, because the interviewer was from

> Amsterdam. I have a resident's daughter at the nursing home translating it for

> me, they are from Amsterdam. It is 3 pages long. I tried the online

translation

>

>

>

> to English, but the English is very poor that it is almost as bad as trying to

> read the Dutch. Hahahaha After it is translated, I will scan a copy to

>

>

> and hopefully, she can get it across to all of you.

> Last July the interviewer contacted the LBDA, as you might remember, and

>

>

>

> and put the word out that he would be in the San Francisco Bay Area

>and

>

> needed someone that he could interview in August on Capgras for the

> " Psychologie " Magazine in Amsterdam. I guess I was the only one that contacted

> him and said I could do it, so he met me at the nursing home where my husband

>is

>

> residing. The interview was 2 1/2 hours long. He was very easy to talk to, he

> had his tape recorder and asked questions and I would answer and ramble on.

LOL

>

>

>

> I told him Capgras was a symptom within Lewy Body that some have and some

> don't and that it doesn't vary that much or happen everyday and that I could

>not

>

> make a page for him in the magazine with just Capgras alone. I told him about

> Lewy Body too, so he could connect it with Capgras, but I am not sure how the

> article came out since he was assigned to do Capgras only and I have a feeling

> he made some of the Lewy Body issues into Capgras issues to fill the pages.

>I'll

>

> know after it is translated how he told the story.

> Jan Colello

> San Francisco Bay Area, California

> husband, Jim dx w/LBD 2003

>

>

>

>

>

[Guest guest]

Jan I know you are doing all you can. Is someone feeding him and doing all the

work of getting the food/drink to his mouth so he can put his energy to

eating/swallowing? I’m curious, did they ask you to get a sippy cup so it

doesn’t spill if tipped over or because they thought he would be able to

better suck the fluid out safely? If it’s the former reason it sounds like

they are leaving him on his own to eat/drink and that, as was explained to us,

is the foremost reason people with these swallowing difficulties lose so much

weight and aspirate. It takes a lot of energy to concentrate and get the food

managed in the mouth and a good swallow and then even a second or third swallow

to clear around the airway so there isn’t residual around the edge of the

windpipe that can fall in. I imagine he is very weak even more so with the

infections. Can he manage a swallow if thickened liquid is spooned in?

I’ll share what we are doing just in case it provides something of use to you.

We are doing is pureeing food or cooking soft (soft mechanical diet) and someone

has to take a spoon of food the right size, feed her, encourage to chew as

needed, keeping a hand lightly on the back of the neck to 1) prevent the head

from going back and 2) encourage chin downward for the swallow, then getting her

to say something (asking a question what’s the dog doing, what does the food

taste like, etc.) to be sure the airway does not have the gurgly or raspy sound

(other than normal). And then going to the next bite or drink. About 50% of

the time we have to get another swallow to clear the airway because the flap

that seals over the windpipe during a swallow does not seal off entirely and

leaves a residual around the edge of the airpipe. We have been using a straw

for liquids but she is not doing well with it – the liquids go back into the

cup, so now back to thickened liquids out of a cup with a thin rim (easier on

the mouth) but she cannot manage it so we are holding it and she is free to

concentrate on the swallow part.

Current speech pathologist told me that people will often stop eating/drinking

if they are having too much trouble with aspiration/choking especially if they

are left on their own to eat/drink. I’m not at all sure what level of care

a facility would provide with eating/drinking and perhaps this amount of

assistance is more than they provide.

If he cannot swallow at all a sippy cup will not help things. I would ask for

the sp to re evaluate things asap and figure out what’s going on.

I’m sorry, I know you are going through hell right now and wish there was

something more I could offer.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Janet Colello

Sent: Sunday, January 16, 2011 3:41 AM

To: LBDcaregivers

Subject: Re: Re: Hi All

Hi Dorothy,

The speech pathologist already evaluated Jim last summer and put him on pureed

foods, before that he was on mechanical soft foods. He was already on thickened

liquids. They had a meeting with me last week and said to get him a sippy cup,

so he won't aspirate, but he had a hard time with a sippy cup, because it is

also made not to spill when it tips over so if it is tipped up to drink, he

can't get anything out of it unless he sucks on the tip, but he doesn't suck. I

went back to the old way using an actual cup, but now he is not drinking or

eating. He either holds it in his mouth or spits it out. I can't get it into

him.

Jan

________________________________

From: dsinouye <fullcircle@... <mailto:fullcircle%40sonic.net> >

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Sent: Sat, January 15, 2011 2:24:20 PM

Subject: RE: Re: Hi All

Jan,

Can you get them to bring in a speech pathologist asap to help figure out how

Jim can swallow (and eat and drink) more safely? Or has this already been done?

Dorothy

From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ]

On

Behalf Of Janet Colello

Sent: Saturday, January 15, 2011 11:16 AM

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Subject: Re: Re: Hi All

Thank you Leona,

I have read and tried to prepare myself for this time, but I am feeling helpless

and there is nothing I can do, but be there for Jim. It's very hard to watch him

shut down. He has lost so much weight, I don't think there is enough strength in

him to fight this anymore. He has been such a fighter and overcame so many

obstacles that could have brought him down. It's hard to see him this way. I

was with him until midnight last evening/this morning.

It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic as

of last night that covers both, but he would not swallow the medication. Leona,

only a week ago he was eating his entire meals. I don't know if it is false

hope, but I am wishing that it is just that he feels so lousy he won't swallow,

but if he gets some antibiotic, he will start to feel better and swallow again,

but maybe I am just having false hope and this is it. I just can't get a grip on

this. No matter how much I have prepared for this moment, it is like I am having

a bad dream. Jim told me he was dying last night in a whispery voice. I feel

numb just thinking about the loss. A lab tech was in and did a blood test on Jim

yesterday to see if there is an infection in the blood. Jim is my hero, he is so

brave. This dreaded disease tears me apart.

I need to hear from people like you that have gone through this and survived. I

just can't imagine my life without Jim, but I know I will get through this and

move on, I just don't know how yet.

Thank you so much, I appreciate hearing from you.

Love and Hugs,

Jan

Leona, this is so true:

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

to live without. "

________________________________

From: Leona Chereshnoski <lchere@... <mailto:lchere%40hughes.net>

<mailto:lchere%40hughes.net> >

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com>

Sent: Sat, January 15, 2011 10:27:52 AM

Subject: Re: Hi All

Jan: I have been where you are and feel that I know what you are going

through. My oldest daughter told me the other day that she thought Dad knew

that he was ready to go and just quit eating. I felt it was just the course

of the LBD and it was his time to go. Either way, I am sure Ray wouldn't

have wanted to continue any longer in the shape he was in. Comfort yourself

with the knowledge that you have done every thing you could to care for him,

show your love for him in every way you could and advocated for him

everytime the opportunity arose. We lived our vows to the end. We also

realize that he will be in a better place and when we meet them again, they

will no longer be sick! As you have had the strength to suffer along with

him every step of the way, you will find the strength to find your way

through the end time. It has been two years this spring and the tears came

back as I read your post because the things you are seeing, are the things I

saw as he faded away. Now, I think often of the things he said and did. I

smile often as I tell a story or remember a good time we had. You may find

as I did, that I did a lot of my grieving long before he died. Once I

realized there were no miracle drugs, or treatments or cures --that he was

on steep slope fading away, I cried and grieved him 6 months before he died.

I did not know that is what was going on, but afterward, I realized and

really handled everything very well. Jan, please know that you and Jim are

in my prayers and thoughts as you continue down this difficult road. God

Bless you both!! 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]

Thank you Dorothy, but Jim is in the final stages where he can not swallow. He

has been on pureed for about a year and on thickened liquids. I was giving Jim

liquids with a syringe that I bought in the baby aisle at the pharmacy used to

give babies liquid medication to get liquids in him and he was swallowing it,

but I was told by the staff at the nursing home, I could not use the syringe and

they suggested to get a sippy cup. I laughed at that, because I told them Jim

can not even suck on a straw, how is he going to use a sippy cup? You can't tip

it to drink, it is made purposely not to spill when tipped.

Jim has stopped eating all together, he does drink a little from a cup or I

still sneak the syringe in and give him sips from that. I can control a little

drip at a time into his mouth with the syringe. Jim is not swallowing his

antibiotic for Pneumonia and it is worse.

Jim is all bones now and very weak.

I appreciate all you suggestions, but they will not work for Jim since he can no

longer swallow at all and will hold the food in his mouth or spit it out, but

now he is too weak to even open his mouth for food, but he will sip from a cup a

little.

The staff at the facility would feed the people that need to be fed, I believe

they may have aspirated Jim, because they are on a schedule to get the people

fed and out and sometimes give them too much at a time. I have seen it. I always

made sure to be with Jim for dinner and help him, but I could not be there for

breakfast and lunch.

I appreciate your concern and your help.

Jan

________________________________

To: LBDcaregivers

Sent: Sun, January 16, 2011 5:14:32 PM

Subject: RE: Re: Hi All

 

Jan I know you are doing all you can. Is someone feeding him and doing all the

work of getting the food/drink to his mouth so he can put his energy to

eating/swallowing? I’m curious, did they ask you to get a sippy cup so it

doesn’t spill if tipped over or because they thought he would be able to

better

suck the fluid out safely? If it’s the former reason it sounds like they are

leaving him on his own to eat/drink and that, as was explained to us, is the

foremost reason people with these swallowing difficulties lose so much weight

and aspirate. It takes a lot of energy to concentrate and get the food managed

in the mouth and a good swallow and then even a second or third swallow to clear

around the airway so there isn’t residual around the edge of the windpipe that

can fall in. I imagine he is very weak even more so with the infections. Can he

manage a swallow if thickened liquid is spooned in?

I’ll share what we are doing just in case it provides something of use to you.

We are doing is pureeing food or cooking soft (soft mechanical diet) and someone

has to take a spoon of food the right size, feed her, encourage to chew as

needed, keeping a hand lightly on the back of the neck to 1) prevent the head

from going back and 2) encourage chin downward for the swallow, then getting her

to say something (asking a question what’s the dog doing, what does the food

taste like, etc.) to be sure the airway does not have the gurgly or raspy sound

(other than normal). And then going to the next bite or drink. About 50% of the

time we have to get another swallow to clear the airway because the flap that

seals over the windpipe during a swallow does not seal off entirely and leaves a

residual around the edge of the airpipe. We have been using a straw for liquids

but she is not doing well with it – the liquids go back into the cup, so now

back to thickened liquids out of a cup with a thin rim (easier on the mouth) but

she cannot manage it so we are holding it and she is free to concentrate on the

swallow part.

Current speech pathologist told me that people will often stop eating/drinking

if they are having too much trouble with aspiration/choking especially if they

are left on their own to eat/drink. I’m not at all sure what level of care a

facility would provide with eating/drinking and perhaps this amount of

assistance is more than they provide.

If he cannot swallow at all a sippy cup will not help things. I would ask for

the sp to re evaluate things asap and figure out what’s going on.

I’m sorry, I know you are going through hell right now and wish there was

something more I could offer.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Janet Colello

Sent: Sunday, January 16, 2011 3:41 AM

To: LBDcaregivers

Subject: Re: Re: Hi All

Hi Dorothy,

The speech pathologist already evaluated Jim last summer and put him on pureed

foods, before that he was on mechanical soft foods. He was already on thickened

liquids. They had a meeting with me last week and said to get him a sippy cup,

so he won't aspirate, but he had a hard time with a sippy cup, because it is

also made not to spill when it tips over so if it is tipped up to drink, he

can't get anything out of it unless he sucks on the tip, but he doesn't suck. I

went back to the old way using an actual cup, but now he is not drinking or

eating. He either holds it in his mouth or spits it out. I can't get it into

him.

Jan

________________________________

From: dsinouye <fullcircle@... <mailto:fullcircle%40sonic.net> >

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Sent: Sat, January 15, 2011 2:24:20 PM

Subject: RE: Re: Hi All

Jan,

Can you get them to bring in a speech pathologist asap to help figure out how

Jim can swallow (and eat and drink) more safely? Or has this already been done?

Dorothy

From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ]

On

Behalf Of Janet Colello

Sent: Saturday, January 15, 2011 11:16 AM

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Subject: Re: Re: Hi All

Thank you Leona,

I have read and tried to prepare myself for this time, but I am feeling helpless

and there is nothing I can do, but be there for Jim. It's very hard to watch him

shut down. He has lost so much weight, I don't think there is enough strength in

him to fight this anymore. He has been such a fighter and overcame so many

obstacles that could have brought him down. It's hard to see him this way. I

was with him until midnight last evening/this morning.

It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic as

of last night that covers both, but he would not swallow the medication. Leona,

only a week ago he was eating his entire meals. I don't know if it is false

hope, but I am wishing that it is just that he feels so lousy he won't swallow,

but if he gets some antibiotic, he will start to feel better and swallow again,

but maybe I am just having false hope and this is it. I just can't get a grip on

this. No matter how much I have prepared for this moment, it is like I am having

a bad dream. Jim told me he was dying last night in a whispery voice. I feel

numb just thinking about the loss. A lab tech was in and did a blood test on Jim

yesterday to see if there is an infection in the blood. Jim is my hero, he is so

brave. This dreaded disease tears me apart.

I need to hear from people like you that have gone through this and survived. I

just can't imagine my life without Jim, but I know I will get through this and

move on, I just don't know how yet.

Thank you so much, I appreciate hearing from you.

Love and Hugs,

Jan

Leona, this is so true:

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

to live without. "

________________________________

From: Leona Chereshnoski <lchere@... <mailto:lchere%40hughes.net>

<mailto:lchere%40hughes.net> >

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com>

Sent: Sat, January 15, 2011 10:27:52 AM

Subject: Re: Hi All

Jan: I have been where you are and feel that I know what you are going

through. My oldest daughter told me the other day that she thought Dad knew

that he was ready to go and just quit eating. I felt it was just the course

of the LBD and it was his time to go. Either way, I am sure Ray wouldn't

have wanted to continue any longer in the shape he was in. Comfort yourself

with the knowledge that you have done every thing you could to care for him,

show your love for him in every way you could and advocated for him

everytime the opportunity arose. We lived our vows to the end. We also

realize that he will be in a better place and when we meet them again, they

will no longer be sick! As you have had the strength to suffer along with

him every step of the way, you will find the strength to find your way

through the end time. It has been two years this spring and the tears came

back as I read your post because the things you are seeing, are the things I

saw as he faded away. Now, I think often of the things he said and did. I

smile often as I tell a story or remember a good time we had. You may find

as I did, that I did a lot of my grieving long before he died. Once I

realized there were no miracle drugs, or treatments or cures --that he was

on steep slope fading away, I cried and grieved him 6 months before he died.

I did not know that is what was going on, but afterward, I realized and

really handled everything very well. Jan, please know that you and Jim are

in my prayers and thoughts as you continue down this difficult road. God

Bless you both!! 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]

jan,

if they wont move the jerk, will they move jim instead??? they hsould out of

respect, and also since you have been there for several yaers now. 

praying for you, looked of r you last nite on ym,  but was so tired i couldnt

wait up.    take careof yourself my firend, that is an odrer.   hugs.

sharon

Come check out our new website. where you can get Food, Toys, & Tweets

for your Furries & Beaks. Want to host a Pawty and earn free stuff?

or become a Personal Pet Advisor? contact us and we will help you.  This is

sooo much fun!!!!

     www.petlane.com/pawstively_de_lick_cious

Subject: Re: Re: Hi All

To: LBDcaregivers

Date: Tuesday, January 18, 2011, 8:14 AM

 

Isnt there something like an Ombudsman or someone who you can complain to to get

this man moved to another room? That adds so much to the stress level for you

and for Jim. I can't begin to imagine having to listen to that in the best of

times. I'm so sorry.

Kathy

Re: Hi All

>

> Jan: I have been where you are and feel that I know what you are going

> through. My oldest daughter told me the other day that she thought Dad knew

> that he was ready to go and just quit eating. I felt it was just the course

> of the LBD and it was his time to go. Either way, I am sure Ray wouldn't

> have wanted to continue any longer in the shape he was in. Comfort yourself

> with the knowledge that you have done every thing you could to care for him,

> show your love for him in every way you could and advocated for him

> everytime the opportunity arose. We lived our vows to the end. We also

> realize that he will be in a better place and when we meet them again, they

> will no longer be sick! As you have had the strength to suffer along with

> him every step of the way, you will find the strength to find your way

> through the end time. It has been two years this spring and the tears came

> back as I read your post because the things you are seeing, are the things I

> saw as he faded away. Now, I think often of the things he said and did. I

> smile often as I tell a story or remember a good time we had. You may find

> as I did, that I did a lot of my grieving long before he died. Once I

> realized there were no miracle drugs, or treatments or cures --that he was

> on steep slope fading away, I cried and grieved him 6 months before he died.

> I did not know that is what was going on, but afterward, I realized and

> really handled everything very well. Jan, please know that you and Jim are

> in my prayers and thoughts as you continue down this difficult road. God

> Bless you both!! 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]

praying more today for you adn jim,  hugs sharon   ps dont forget ot take

care of yourself andbe safe driving hugs. sharon

Come check out our new website. where you can get Food, Toys, & Tweets

for your Furries & Beaks. Want to host a Pawty and earn free stuff?

or become a Personal Pet Advisor? contact us and we will help you.  This is

sooo much fun!!!!

     www.petlane.com/pawstively_de_lick_cious

Subject: Re: Re: Hi All

To: LBDcaregivers

Date: Tuesday, January 18, 2011, 12:38 PM

 

Hi ,

I remember talking about the birthdays last year and that will be the same

age as I will be, only I am dyslexic this year and will be 36!

I just got a call from the nursing home and Jim is not responding or opening his

mouth at all. I need to go in and see him, but it is so sad to see. I hate

seeing this, but I need to be with him. It's so hard not being able to do

anything for him, but sit back and let it all take it's course. I am hoping it

doesn't all end on my birthday, it would be even more sad to have that hanging

on my birthday.

Thanks for keeping in touch. I don't know what I would do without you all here

for me.

Love and Hugs

________________________________

To: LBDcaregivers

Sent: Tue, January 18, 2011 9:33:00 AM

Subject: Re: Hi All

 

Jan, I was thinking the same thing! How could you remember 's birthday

during this agonizing time? You are incredible. Yes, his birthday is next week,

Wed, 63. I was thinking of all that you are going through and what is ahead with

your birthday coming up. I hope you can celebrate somehow, if not on Fri, in the

near future. I will pass your birthday wishes on.

Take care Jan. Thinking of you constantly. This is the hardest part, when eating

ceases. You will know you tried valiantly to get the antibiotic in and didn't

give up. Have no regrets about that.

Love

> >

> > Thank you Dorothy, but Jim is in the final stages where he can not swallow.

>He

>

>

> > has been on pureed for about a year and on thickened liquids. I was giving

>Jim

>

>

> > liquids with a syringe that I bought in the baby aisle at the pharmacy used

>to

>

>

> > give babies liquid medication to get liquids in him and he

was

>swallowing it,

>

> >

> > but I was told by the staff at the nursing home, I could not use the syringe

> >and

> >

> > they suggested to get a sippy cup. I laughed at that, because I told them

Jim

>

> > can not even suck on a straw, how is he going to use a sippy cup? You can't

>tip

>

> >

> > it to drink, it is made purposely not to spill when tipped.

> >

> > Jim has stopped eating all together, he does drink a little from a cup or I

> > still sneak the syringe in and give him sips from that. I can control a

>little

>

>

> > drip at a time into his mouth with the syringe. Jim is not swallowing his

> > antibiotic for Pneumonia and it is worse.

> > Jim is all bones now and very weak.

> > I appreciate all you suggestions, but they will not work for Jim since he

can

>

> >no

> >

> > longer swallow at all and will hold the food in his mouth or spit it out,

but

>

> > now he is too weak to even open his mouth for food, but he will sip from a

>cup

>

> >a

> >

> > little.

> > The staff at the facility would feed the people that need to be fed, I

>believe

>

>

> > they may have aspirated Jim, because they are on a schedule to get the

people

>

> > fed and out and sometimes give them too much at a time. I have seen it. I

> >always

> >

> > made sure to be with Jim for dinner and help him, but I could not be there

>for

>

>

> > breakfast and lunch.

> > I appreciate your concern and your help.

> > Jan

> >

> >

> >

> >

> > ________________________________

> > From: dsinouye <fullcircle@>

> > To: LBDcaregivers

> > Sent: Sun, January 16, 2011 5:14:32 PM

> > Subject: RE: Re: Hi All

> >

> >  

> > Jan I know you are doing all you can. Is someone feeding him and doing all

>the

>

>

> > work of getting the food/drink to his mouth so he can put his energy to

> > eating/swallowing? I’m curious, did they ask you to get a

sippy cup so

>it

>

> > doesn’t spill if tipped over or because they thought he

would be able

>to

>

> >better

> >

> > suck the fluid out safely? If it’s the former reason it

sounds like

>they are

>

>

> > leaving him on his own to eat/drink and that, as was explained to us, is the

> > foremost reason people with these swallowing difficulties lose so much

weight

>

> > and aspirate. It takes a lot of energy to concentrate and get the food

>managed

>

>

> > in the mouth and a good swallow and then even a second or third swallow to

> >clear

> >

> > around the airway so there isn’t residual around the edge

of the

>windpipe

>

> >that

> >

> > can fall in. I imagine he is very weak even more so with the infections. Can

>he

>

> >

> > manage a swallow if thickened liquid is spooned in?

> >

> >

> > I’ll share what we are doing just in case it provides

something of use

>to

>

> >you.

> >

> > We are doing is pureeing food or cooking soft (soft mechanical diet) and

> >someone

> >

> > has to take a spoon of food the right size, feed her, encourage to chew as

> > needed, keeping a hand lightly on the back of the neck to 1) prevent the

head

>

> > from going back and 2) encourage chin downward for the swallow, then getting

> >her

> >

> > to say something (asking a question what’s the dog doing,

what does

>the food

>

>

> > taste like, etc.) to be sure the airway does not have the gurgly or raspy

>sound

>

> >

> > (other than normal). And then going to the next bite or drink. About 50% of

>the

>

> >

> > time we have to get another swallow to clear the airway because the flap

that

>

> > seals over the windpipe during a swallow does not seal off entirely and

>leaves

>

> >a

> >

> > residual around the edge of the airpipe. We have been using a straw for

>liquids

>

> >

> > but she is not doing well with it †" the liquids go back into the

cup, so

>now

>

>

> > back to thickened liquids out of a cup with a thin rim (easier on the mouth)

> >but

> >

> > she cannot manage it so we are holding it and she is free to concentrate on

>the

>

> >

> > swallow part.

> >

> >

> > Current speech pathologist told me that people will often stop

>eating/drinking

>

>

> > if they are having too much trouble with aspiration/choking especially if

>they

>

>

> > are left on their own to eat/drink. I’m not at all sure

what level of

>care a

>

>

> > facility would provide with eating/drinking and perhaps this amount of

> > assistance is more than they provide.

> >

> >

> > If he cannot swallow at all a sippy cup will not help things. I would ask

for

>

> > the sp to re evaluate things asap and figure out what’s

going on.

> >

> > I’m sorry, I know you are going through hell right now and

wish there

>was

>

> > something more I could offer.

> >

> > Dorothy

> >

> > From: LBDcaregivers [mailto:LBDcaregivers ]

On

>

> > Behalf Of Janet Colello

> > Sent: Sunday, January 16, 2011 3:41 AM

> > To: LBDcaregivers

> > Subject: Re: Re: Hi All

> >

> > Hi Dorothy,

> > The speech pathologist already evaluated Jim last summer and put him on

>pureed

>

>

> > foods, before that he was on mechanical soft foods. He was already on

>thickened

>

> >

> > liquids. They had a meeting with me last week and said to get him a sippy

>cup,

>

>

> > so he won't aspirate, but he had a hard time with a sippy cup, because it is

> > also made not to spill when it tips over so if it is tipped up to drink, he

> > can't get anything out of it unless he sucks on the tip, but he doesn't

suck.

>I

>

> >

> > went back to the old way using an actual cup, but now he is not drinking or

> > eating. He either holds it in his mouth or spits it out. I can't get it into

> > him.

> > Jan

> >

> > ________________________________

> > From: dsinouye <fullcircle@ <mailto:fullcircle%40sonic.net> >

> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> > Sent: Sat, January 15, 2011 2:24:20 PM

> > Subject: RE: Re: Hi All

> >

> > Jan,

> >

> > Can you get them to bring in a speech pathologist asap to help figure out

how

>

> > Jim can swallow (and eat and drink) more safely? Or has this already been

>done?

>

> >

> >

> > Dorothy

> >

> > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> > [mailto:LBDcaregivers

><mailto:LBDcaregivers%40yahoogroups.com>

>

> >]

> >

> > On

> >

> > Behalf Of Janet Colello

> > Sent: Saturday, January 15, 2011 11:16 AM

> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> > Subject: Re: Re: Hi All

> >

> > Thank you Leona,

> > I have read and tried to prepare myself for this time, but I am feeling

> >helpless

> >

> >

> >

> > and there is nothing I can do, but be there for Jim. It's very hard to watch

> >him

> >

> >

> >

> > shut down. He has lost so much weight, I don't think there is enough

strength

>

> >in

> >

> >

> >

> > him to fight this anymore. He has been such a fighter and overcame so many

> > obstacles that could have brought him down. It's hard to see him this way. I

> > was with him until midnight last evening/this morning.

> > It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic

>as

>

>

> > of last night that covers both, but he would not swallow the medication.

>Leona,

>

> >

> > only a week ago he was eating his entire meals. I don't know if it is false

> > hope, but I am wishing that it is just that he feels so lousy he won't

>swallow,

>

> >

> > but if he gets some antibiotic, he will start to feel better and swallow

>again,

>

> >

> > but maybe I am just having false hope and this is it. I just can't get a

grip

>

> >on

> >

> >

> >

> > this. No matter how much I have prepared for this moment, it is like I am

> >having

> >

> >

> >

> > a bad dream. Jim told me he was dying last night in a whispery voice. I feel

> > numb just thinking about the loss. A lab tech was in and did a blood test on

> >Jim

> >

> >

> >

> > yesterday to see if there is an infection in the blood. Jim is my hero, he

is

>

> >so

> >

> >

> >

> > brave. This dreaded disease tears me apart.

> > I need to hear from people like you that have gone through this and

survived.

>I

>

> >

> > just can't imagine my life without Jim, but I know I will get through this

>and

>

>

> > move on, I just don't know how yet.

> > Thank you so much, I appreciate hearing from you.

> > Love and Hugs,

> > Jan

> >

> > Leona, this is so true:

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

>want

>

> >

> > to live without. "

> >

> > ________________________________

> > From: Leona Chereshnoski <lchere@ <mailto:lchere%40hughes.net>

> > <mailto:lchere%40hughes.net> >

> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> > <mailto:LBDcaregivers%40yahoogroups.com>

> >

> > Sent: Sat, January 15, 2011 10:27:52 AM

> > Subject: Re: Hi All

> >

> > Jan: I have been where you are and feel that I know what you are going

> > through. My oldest daughter told me the other day that she thought Dad knew

> > that he was ready to go and just quit eating. I felt it was just the course

> > of the LBD and it was his time to go. Either way, I am sure Ray wouldn't

> > have wanted to continue any longer in the shape he was in. Comfort yourself

> > with the knowledge that you have done every thing you could to care for him,

> > show your love for him in every way you could and advocated for him

> > everytime the opportunity arose. We lived our vows to the end. We also

> > realize that he will be in a better place and when we meet them again, they

> > will no longer be sick! As you have had the strength to suffer along with

> > him every step of the way, you will find the strength to find your way

> > through the end time. It has been two years this spring and the tears came

> > back as I read your post because the things you are seeing, are the things I

> > saw as he faded away. Now, I think often of the things he said and did. I

> > smile often as I tell a story or remember a good time we had. You may find

> > as I did, that I did a lot of my grieving long before he died. Once I

> > realized there were no miracle drugs, or treatments or cures --that he was

> > on steep slope fading away, I cried and grieved him 6 months before he died.

> > I did not know that is what was going on, but afterward, I realized and

> > really handled everything very well. Jan, please know that you and Jim are

> > in my prayers and thoughts as you continue down this difficult road. God

> > Bless you both!! 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]

Hi All,

My mom has also started having problems with swallowing lately.

And her doctor told me that we have to consider placing PEG

into her stomach in the very near future to protect her from having

aspiration pnemonia. I am wondering why it is not used in USA.

I wish you all strength in this journey.

Ferhan

________________________________

To: LBDcaregivers

Sent: Tue, January 18, 2011 11:59:13 PM

Subject: Re: Re: Hi All - Jan

 

Hi, Jan,

My heart aches for you. When my dad reached the stage where he no longer

could swallow, gave me the tip about using something cold to help

Dad swallow his medicine. Seroquel was the only medicine that was helpful to

Dad by that time and 's tip worked like a charm for him. I would

get Dad those Frostys from 's, and stick the pill in a tiny bite which

he would take. The consistency is somewhere between a milk shake and ice

cream which he seemed to have an easier time with.

My thoughts and prayers are with you and Jim. I know how difficult this

time is for you. You have been an amazing advocate and caregiver for Jim,

and you will always draw peace from that.

Sending you big hugs with all my love,

Piper

[Guest guest]

hi,

 

peg tube is used her in teh usa, hon, but often family members opt not to use it

since their loved ones have no quiality of life.  my daddy said he didtn want

to be fed that way if he couldnt eat, he didnt want to live. 

i have seen people in nurshing homes where thy have thte peg tube in, just to

let htem live,  the man i am thinking about had few visitors, couldnt walk,

couldnt talk, or commnicate adn just liad in bed hollering 'mama  mama'   so

sad.

on the other hand, if the patient was able to have a quality of life but just

not eat, i would go for it.  but thats just my opinon

 

hugs sharon

 

 

Subject: Re: Re: Hi All

To: LBDcaregivers

Date: Tuesday, January 18, 2011, 6:48 PM

 

Hi All,

My mom has also started having problems with swallowing lately.

And her doctor told me that we have to consider placing PEG

into her stomach in the very near future to protect her from having

aspiration pnemonia. I am wondering why it is not used in USA.

I wish you all strength in this journey.

Ferhan

________________________________

To: LBDcaregivers

Sent: Tue, January 18, 2011 11:59:13 PM

Subject: Re: Re: Hi All - Jan

 

Hi, Jan,

My heart aches for you. When my dad reached the stage where he no longer

could swallow, gave me the tip about using something cold to help

Dad swallow his medicine. Seroquel was the only medicine that was helpful to

Dad by that time and 's tip worked like a charm for him. I would

get Dad those Frostys from 's, and stick the pill in a tiny bite which

he would take. The consistency is somewhere between a milk shake and ice

cream which he seemed to have an easier time with.

My thoughts and prayers are with you and Jim. I know how difficult this

time is for you. You have been an amazing advocate and caregiver for Jim,

and you will always draw peace from that.

Sending you big hugs with all my love,

Piper

[Guest guest]

we do not have advanced directives here and my mom never had a chance to tell

us

about her wishes. she never realized she was sick. she always thought she was

perfectly fine. here in turkey, the relatives of the patient are asked to

decide

about the treatment if the patient is mentally ill. and i think it would be

horrible to watch her stop eating and drinking, lose weight and die in front of

my eyes. i would be happy to be with her a little longer. so i will definitely

let them put in the tubes. but you are right, nursing home is not the place for

a patient in that condition. that's way i think of keeping her at home till the

last moment.   

________________________________

To: LBDcaregivers

Sent: Wed, January 19, 2011 4:09:07 AM

Subject: Re: Hi All

 

We do have this here. It is used if the person has not requested 'no feeding

tubes.' That's why people here have Advanced Directives. All of us need to

decide how much intervention we want just to maintain the physical body when the

natural process of death is occurring. For myself, I have an advanced directive

that says no feeding tubes. I watched my friend's wife die with a feeding tube.

It was placed and she had another two years of life but the years were in a

nursing home and there was little pleasure in her life. She laid there and was

kept alive. She never ate again and she never really had any quality of life. At

the end, she was aspirating her own saliva so they had patches behind her ears

to dry out her mouth so there was no saliva. Eventually she died. I watched her

wither away and I knew I would not want that. Has your mother had a chance to

tell you what her wishes are?

>

> Hi All,

> My mom has also started having problems with swallowing lately.

> And her doctor told me that we have to consider placing PEG

> into her stomach in the very near future to protect her from having

> aspiration pnemonia. I am wondering why it is not used in USA.

> I wish you all strength in this journey.

> Ferhan

>

>

>

> ________________________________

>

> To: LBDcaregivers

> Sent: Tue, January 18, 2011 11:59:13 PM

> Subject: Re: Re: Hi All - Jan

>

>  

> Hi, Jan,

>

> My heart aches for you. When my dad reached the stage where he no longer

> could swallow, gave me the tip about using something cold to help

> Dad swallow his medicine. Seroquel was the only medicine that was helpful to

> Dad by that time and 's tip worked like a charm for him. I would

> get Dad those Frostys from 's, and stick the pill in a tiny bite which

> he would take. The consistency is somewhere between a milk shake and ice

> cream which he seemed to have an easier time with.

>

> My thoughts and prayers are with you and Jim. I know how difficult this

> time is for you. You have been an amazing advocate and caregiver for Jim,

> and you will always draw peace from that.

>

> Sending you big hugs with all my love,

>

> Piper

>

>

>

>

[Guest guest]

Hi Ferhan,

We are dealing with this stage too but told a feeding tube etc is a lot of

trouble to maintain and has it’s own unique problems so going through the

speech pathologist and soon a modified barium swallow test to see if and what we

can keep aspiration from happening. I have to tell you so far we are doing very

good! My mil has clear lungs and is recovered finally from the pneumonia. I

have been learning so very much and I’ve been making sure anyone who might

want to feed my MIL is trained and passes muster by the speech pathologist while

we have access to her. Have you tried this yet? My mil lives at home with us

and because someone here mentioned it, I asked about home care services when

she was sick this last time. It’s been very helpful and I highly recommend it

for anyone who’s loved one is living at home. We have had access to not only

an excellent speech pathologist, but also physical therapist, occupational

therapist (they identify and help obtain equipment that will make them more

comfortable and safe), a person who comes and bathes her and a social worker.

They will send a podiatrist also to take care of her problem nails so she can

walk better which is wonderful as it’s been very hard to get over to the next

town where there is one who accepts medicare. We have access to the speech

pathologist as long as she is in home care and we’re told anytime things

change and we need help again we can request to be readmitted and have her come

out again. The OT is working on a better hospital bed for her and getting two

bars installed in the bathroom and has brought a few small things to us that

have helped make life much easier.

I cannot say how well a speech pathologist would work for someone in a facility

however. I can’t imagine they would be able to devote near as much time and

detailed attention as we have received at home. The peg has problems with

maintenance and keeping clean and irritation of surrounding tissue and also

sometimes there’s problems with patients picking at them.

Hope you find some good solutions J

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Ferhan Dayigil Ziyal

Sent: Tuesday, January 18, 2011 4:49 PM

To: LBDcaregivers

Subject: Re: Re: Hi All

Hi All,

My mom has also started having problems with swallowing lately.

And her doctor told me that we have to consider placing PEG

into her stomach in the very near future to protect her from having

aspiration pnemonia. I am wondering why it is not used in USA.

I wish you all strength in this journey.

Ferhan

________________________________

From: " ppark4915@... <mailto:ppark4915%40aol.com> " <ppark4915@...

<mailto:ppark4915%40aol.com> >

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Sent: Tue, January 18, 2011 11:59:13 PM

Subject: Re: Re: Hi All - Jan

Hi, Jan,

My heart aches for you. When my dad reached the stage where he no longer

could swallow, gave me the tip about using something cold to help

Dad swallow his medicine. Seroquel was the only medicine that was helpful to

Dad by that time and 's tip worked like a charm for him. I would

get Dad those Frostys from 's, and stick the pill in a tiny bite which

he would take. The consistency is somewhere between a milk shake and ice

cream which he seemed to have an easier time with.

My thoughts and prayers are with you and Jim. I know how difficult this

time is for you. You have been an amazing advocate and caregiver for Jim,

and you will always draw peace from that.

Sending you big hugs with all my love,

Piper

[Guest guest]

Ferhan,

My mil also let it be known she did not want to be kept alive with feeding tubes

or ventilator. I’m glad she let us know. This is another reason why we are

working with the speech pathologist/therapist to make eating safer and still

keep it enjoyable for her. It’s a quality of life thing too. From what I

have seen when it gets to the point that a person cannot eat or drink at all

there’s a great amount of other suffering going on that isn’t easily

managed.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Ferhan Dayigil Ziyal

Sent: Tuesday, January 18, 2011 7:09 PM

To: LBDcaregivers

Subject: Re: Re: Hi All

we do not have advanced directives here and my mom never had a chance to tell us

about her wishes. she never realized she was sick. she always thought she was

perfectly fine. here in turkey, the relatives of the patient are asked to decide

about the treatment if the patient is mentally ill. and i think it would be

horrible to watch her stop eating and drinking, lose weight and die in front of

my eyes. i would be happy to be with her a little longer. so i will definitely

let them put in the tubes. but you are right, nursing home is not the place for

a patient in that condition. that's way i think of keeping her at home till the

last moment.

________________________________

From: nandelfisch <nandelfisch@... <mailto:nandelfisch%40yahoo.com> >

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Sent: Wed, January 19, 2011 4:09:07 AM

Subject: Re: Hi All

We do have this here. It is used if the person has not requested 'no feeding

tubes.' That's why people here have Advanced Directives. All of us need to

decide how much intervention we want just to maintain the physical body when the

natural process of death is occurring. For myself, I have an advanced directive

that says no feeding tubes. I watched my friend's wife die with a feeding tube.

It was placed and she had another two years of life but the years were in a

nursing home and there was little pleasure in her life. She laid there and was

kept alive. She never ate again and she never really had any quality of life. At

the end, she was aspirating her own saliva so they had patches behind her ears

to dry out her mouth so there was no saliva. Eventually she died. I watched her

wither away and I knew I would not want that. Has your mother had a chance to

tell you what her wishes are?

>

> Hi All,

> My mom has also started having problems with swallowing lately.

> And her doctor told me that we have to consider placing PEG

> into her stomach in the very near future to protect her from having

> aspiration pnemonia. I am wondering why it is not used in USA.

> I wish you all strength in this journey.

> Ferhan

>

>

>

> ________________________________

>

> To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> Sent: Tue, January 18, 2011 11:59:13 PM

> Subject: Re: Re: Hi All - Jan

>

> Â

> Hi, Jan,

>

> My heart aches for you. When my dad reached the stage where he no longer

> could swallow, gave me the tip about using something cold to help

> Dad swallow his medicine. Seroquel was the only medicine that was helpful to

> Dad by that time and 's tip worked like a charm for him. I would

> get Dad those Frostys from 's, and stick the pill in a tiny bite which

> he would take. The consistency is somewhere between a milk shake and ice

> cream which he seemed to have an easier time with.

>

> My thoughts and prayers are with you and Jim. I know how difficult this

> time is for you. You have been an amazing advocate and caregiver for Jim,

> and you will always draw peace from that.

>

> Sending you big hugs with all my love,

>

> Piper

>

>

>

>

[Guest guest]

That guy is a real nightmare! I have had patience with him, but at this point I

have none. I requested the nurse keep him out in the hall tonight, so I could

speak with Jim and bring that guy in later, so they did and I had some good

quality time with Jim.

The nursing home yesterday morning called and said Jim would not respond to them

and I thought that meant he was comatose. I went in to see Jim and talked to him

and he opened one eye and moved his lips...No words or noises, but he responded

to my voice. That was such a gift and then he closed his eye and didn't respond

anymore. Jim's daughter and her daughter came in, but he did not respond to

them.

I am thankful for my time with Jim through this illness. The Lord allowed us to

reach our 20th anniversary last month. And I believe I was given some extended

bonus time with him, since there were so many other times I thought I was losing

Jim and he would pull through. He fought a good fight each time and this is

his

last battle.

God Bless Jim! He Is My Hero.

 

________________________________

To: LBDcaregivers

Sent: Tue, January 18, 2011 11:18:31 AM

Subject: Re: Hi All

 

Dear Jan,

What an awful situation Jim is in with his roommate - it sounds like a real

nightmare...

I just keep sending up lots of prayers for your strength, and for Jim's.

Sending hugs and love from NY,

Helene

> >

> > Thank you Dorothy, but Jim is in the final stages where he can not swallow.

>He

>

>

> > has been on pureed for about a year and on thickened liquids. I was giving

>Jim

>

>

> > liquids with a syringe that I bought in the baby aisle at the pharmacy used

>to

>

>

> > give babies liquid medication to get liquids in him and he

was

>swallowing it,

>

> >

> > but I was told by the staff at the nursing home, I could not use the syringe

> >and

> >

> > they suggested to get a sippy cup. I laughed at that, because I told them

Jim

>

> > can not even suck on a straw, how is he going to use a sippy cup? You can't

>tip

>

> >

> > it to drink, it is made purposely not to spill when tipped.

> >

> > Jim has stopped eating all together, he does drink a little from a cup or I

> > still sneak the syringe in and give him sips from that. I can control a

>little

>

>

> > drip at a time into his mouth with the syringe. Jim is not swallowing his

> > antibiotic for Pneumonia and it is worse.

> > Jim is all bones now and very weak.

> > I appreciate all you suggestions, but they will not work for Jim since he

can

>

> >no

> >

> > longer swallow at all and will hold the food in his mouth or spit it out,

but

>

> > now he is too weak to even open his mouth for food, but he will sip from a

>cup

>

> >a

> >

> > little.

> > The staff at the facility would feed the people that need to be fed, I

>believe

>

>

> > they may have aspirated Jim, because they are on a schedule to get the

people

>

> > fed and out and sometimes give them too much at a time. I have seen it. I

> >always

> >

> > made sure to be with Jim for dinner and help him, but I could not be there

>for

>

>

> > breakfast and lunch.

> > I appreciate your concern and your help.

> > Jan

> >

> >

> >

> >

> > ________________________________

> > From: dsinouye <fullcircle@>

> > To: LBDcaregivers

> > Sent: Sun, January 16, 2011 5:14:32 PM

> > Subject: RE: Re: Hi All

> >

> >  

> > Jan I know you are doing all you can. Is someone feeding him and doing all

>the

>

>

> > work of getting the food/drink to his mouth so he can put his energy to

> > eating/swallowing? I’m curious, did they ask you to get a

sippy cup so

>it

>

> > doesn’t spill if tipped over or because they thought he

would be able

>to

>

> >better

> >

> > suck the fluid out safely? If it’s the former reason it

sounds like

>they are

>

>

> > leaving him on his own to eat/drink and that, as was explained to us, is the

> > foremost reason people with these swallowing difficulties lose so much

weight

>

> > and aspirate. It takes a lot of energy to concentrate and get the food

>managed

>

>

> > in the mouth and a good swallow and then even a second or third swallow to

> >clear

> >

> > around the airway so there isn’t residual around the edge

of the

>windpipe

>

> >that

> >

> > can fall in. I imagine he is very weak even more so with the infections. Can

>he

>

> >

> > manage a swallow if thickened liquid is spooned in?

> >

> >

> > I’ll share what we are doing just in case it provides

something of use

>to

>

> >you.

> >

> > We are doing is pureeing food or cooking soft (soft mechanical diet) and

> >someone

> >

> > has to take a spoon of food the right size, feed her, encourage to chew as

> > needed, keeping a hand lightly on the back of the neck to 1) prevent the

head

>

> > from going back and 2) encourage chin downward for the swallow, then getting

> >her

> >

> > to say something (asking a question what’s the dog doing,

what does

>the food

>

>

> > taste like, etc.) to be sure the airway does not have the gurgly or raspy

>sound

>

> >

> > (other than normal). And then going to the next bite or drink. About 50% of

>the

>

> >

> > time we have to get another swallow to clear the airway because the flap

that

>

> > seals over the windpipe during a swallow does not seal off entirely and

>leaves

>

> >a

> >

> > residual around the edge of the airpipe. We have been using a straw for

>liquids

>

> >

> > but she is not doing well with it †" the liquids go back into the

cup, so

>now

>

>

> > back to thickened liquids out of a cup with a thin rim (easier on the mouth)

> >but

> >

> > she cannot manage it so we are holding it and she is free to concentrate on

>the

>

> >

> > swallow part.

> >

> >

> > Current speech pathologist told me that people will often stop

>eating/drinking

>

>

> > if they are having too much trouble with aspiration/choking especially if

>they

>

>

> > are left on their own to eat/drink. I’m not at all sure

what level of

>care a

>

>

> > facility would provide with eating/drinking and perhaps this amount of

> > assistance is more than they provide.

> >

> >

> > If he cannot swallow at all a sippy cup will not help things. I would ask

for

>

> > the sp to re evaluate things asap and figure out what’s

going on.

> >

> > I’m sorry, I know you are going through hell right now and

wish there

>was

>

> > something more I could offer.

> >

> > Dorothy

> >

> > From: LBDcaregivers [mailto:LBDcaregivers ]

On

>

> > Behalf Of Janet Colello

> > Sent: Sunday, January 16, 2011 3:41 AM

> > To: LBDcaregivers

> > Subject: Re: Re: Hi All

> >

> > Hi Dorothy,

> > The speech pathologist already evaluated Jim last summer and put him on

>pureed

>

>

> > foods, before that he was on mechanical soft foods. He was already on

>thickened

>

> >

> > liquids. They had a meeting with me last week and said to get him a sippy

>cup,

>

>

> > so he won't aspirate, but he had a hard time with a sippy cup, because it is

> > also made not to spill when it tips over so if it is tipped up to drink, he

> > can't get anything out of it unless he sucks on the tip, but he doesn't

suck.

>I

>

> >

> > went back to the old way using an actual cup, but now he is not drinking or

> > eating. He either holds it in his mouth or spits it out. I can't get it into

> > him.

> > Jan

> >

> > ________________________________

> > From: dsinouye <fullcircle@ <mailto:fullcircle%40sonic.net> >

> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> > Sent: Sat, January 15, 2011 2:24:20 PM

> > Subject: RE: Re: Hi All

> >

> > Jan,

> >

> > Can you get them to bring in a speech pathologist asap to help figure out

how

>

> > Jim can swallow (and eat and drink) more safely? Or has this already been

>done?

>

> >

> >

> > Dorothy

> >

> > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> > [mailto:LBDcaregivers

><mailto:LBDcaregivers%40yahoogroups.com>

>

> >]

> >

> > On

> >

> > Behalf Of Janet Colello

> > Sent: Saturday, January 15, 2011 11:16 AM

> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> > Subject: Re: Re: Hi All

> >

> > Thank you Leona,

> > I have read and tried to prepare myself for this time, but I am feeling

> >helpless

> >

> >

> >

> > and there is nothing I can do, but be there for Jim. It's very hard to watch

> >him

> >

> >

> >

> > shut down. He has lost so much weight, I don't think there is enough

strength

>

> >in

> >

> >

> >

> > him to fight this anymore. He has been such a fighter and overcame so many

> > obstacles that could have brought him down. It's hard to see him this way. I

> > was with him until midnight last evening/this morning.

> > It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic

>as

>

>

> > of last night that covers both, but he would not swallow the medication.

>Leona,

>

> >

> > only a week ago he was eating his entire meals. I don't know if it is false

> > hope, but I am wishing that it is just that he feels so lousy he won't

>swallow,

>

> >

> > but if he gets some antibiotic, he will start to feel better and swallow

>again,

>

> >

> > but maybe I am just having false hope and this is it. I just can't get a

grip

>

> >on

> >

> >

> >

> > this. No matter how much I have prepared for this moment, it is like I am

> >having

> >

> >

> >

> > a bad dream. Jim told me he was dying last night in a whispery voice. I feel

> > numb just thinking about the loss. A lab tech was in and did a blood test on

> >Jim

> >

> >

> >

> > yesterday to see if there is an infection in the blood. Jim is my hero, he

is

>

> >so

> >

> >

> >

> > brave. This dreaded disease tears me apart.

> > I need to hear from people like you that have gone through this and

survived.

>I

>

> >

> > just can't imagine my life without Jim, but I know I will get through this

>and

>

>

> > move on, I just don't know how yet.

> > Thank you so much, I appreciate hearing from you.

> > Love and Hugs,

> > Jan

> >

> > Leona, this is so true:

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

>want

>

> >

> > to live without. "

> >

> > ________________________________

> > From: Leona Chereshnoski <lchere@ <mailto:lchere%40hughes.net>

> > <mailto:lchere%40hughes.net> >

> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> > <mailto:LBDcaregivers%40yahoogroups.com>

> >

> > Sent: Sat, January 15, 2011 10:27:52 AM

> > Subject: Re: Hi All

> >

> > Jan: I have been where you are and feel that I know what you are going

> > through. My oldest daughter told me the other day that she thought Dad knew

> > that he was ready to go and just quit eating. I felt it was just the course

> > of the LBD and it was his time to go. Either way, I am sure Ray wouldn't

> > have wanted to continue any longer in the shape he was in. Comfort yourself

> > with the knowledge that you have done every thing you could to care for him,

> > show your love for him in every way you could and advocated for him

> > everytime the opportunity arose. We lived our vows to the end. We also

> > realize that he will be in a better place and when we meet them again, they

> > will no longer be sick! As you have had the strength to suffer along with

> > him every step of the way, you will find the strength to find your way

> > through the end time. It has been two years this spring and the tears came

> > back as I read your post because the things you are seeing, are the things I

> > saw as he faded away. Now, I think often of the things he said and did. I

> > smile often as I tell a story or remember a good time we had. You may find

> > as I did, that I did a lot of my grieving long before he died. Once I

> > realized there were no miracle drugs, or treatments or cures --that he was

> > on steep slope fading away, I cried and grieved him 6 months before he died.

> > I did not know that is what was going on, but afterward, I realized and

> > really handled everything very well. Jan, please know that you and Jim are

> > in my prayers and thoughts as you continue down this difficult road. God

> > Bless you both!! 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]

Hi Courage,

Yes, I remember and what a pain he was. Your dad went the same way Jim

is going, Pneumonia and I am guessing Sepsis now, it was a UTI, but he didn't

take the antibiotic. So horrible coupled with starvation and dehydration.

I wanted Jim to stay with me and he made it to the last stage, now I think it

would have been easier if he went earlier and didn't have to starve. It's so

hard giving up the one you love.

Thank you Courage, because I feel the strength. I'm  not as teary eyed as I was

the last couple of days. I'm looking at this as a natural process that has to

happen. We can't live on earth forever, there would be no space for the new

comers.

It's hardest on the one left behind I think. But I have all my good memories and

no one can take those from me.

Jan

________________________________

To: LBDcaregivers

Sent: Tue, January 18, 2011 7:18:46 AM

Subject: Re: Re: Hi All

 

Jan,

Your post really hit home for me. My dad was unable to feed himself because his

PD tremors were so bad. He developed aspiration pneumonia which then lead to

sepsis and finally death. I remember walking into the dining room and one of the

aids was feeding my dad so quickly – I don’t think he was able to chew more

than

once or twice per spoonful. I still often wonder if this is what brought on the

pneumonia. And then, of course, there was – remember him? I don’t

think

we ever got any satisfaction from brining our concerns to the higher ups but

don’t let that stop you from making some noise yourself. Sending you and Jim

much strength.

Courage

From: Janet Colello

Sent: Tuesday, January 18, 2011 6:18 AM

To: LBDcaregivers

Subject: Re: Re: Hi All

Hi Joan,

I think that telling me not to use the syringe was a planned thing. Sometimes I

think nursing homes have a need to clean out to allow new in. (Just my opinion,

not a fact.) It seems that groups go at or around the same time.

It angered me, because their alternative to the syringe was a " Sippy Cup " I told

them Jim couldn't suck with a straw before their idea of a " Sippy Cup " The

person has to be able to suck on a sippy cup. Just a stupid suggestion of

theirs, it would dehydrate Jim even more not to be able to get anything, if he

were actually able to drink.

They told me, but I think they lied, that the syringe would aspirate Jim. Huh?

How so, when I can regulate how much he gets and wait for him to swallow. They

first suggested a straw before the sippy cup, how can he aspirate from a syringe

compared to a straw? Sometimes Jim even sucked from the tip of the syringe to

get more. I saw CNAs pour liquid into Jim's mouth that he could not swallow as

fast as they poured. That was not aspirating him?!!! Something smelled fishy to

me about that whole thing. I learned the use of a syringe from an occupational

therapist where I worked with special needs children and she used the syringe

with kids that had failure to thrive.

I didn't give up on the syringe, I would attempt to use it behind the curtain

when the nurses weren't around. Jim will not even take from the syringe now.

Everything I put in drools back out. It was really a saving grace with Jim to

hydrate him or he probably would have been extremely dehydrated long ago. In the

early years at the nursing home, he was dehydrated often and needed IVs to

hydrate him, since the syringe he was fine for a few years.

Jim has a roommate that is awful, disrespectful of older people and women in

general. He has a foul mouth and I would love to take a bar of soap and wash it

out! Anytime I try to talk to Jim, because I am saying it in low tones, so that

awful guy can't hear, but he yells, " Stop Talking Baby Talk To Him! " Or " Shut Up

Dumb Broad! " He shouts that to everyone in the halls constantly, especially old

ladies. He is 45 and was in an accident. His accident was when he was 25 and he

still thinks he is 25. He fell off a bridge and hit his head on a rock. He is

blind and his head is gashed in on one side and he is paralized on the other. I

don't know if it is the brain damage that causes him to talk that way, but he

uses the F word and shouts in the halls even if an older woman is quietly

talking to someone else, " Shut Up F---in' Broad! " It's awful, because I can not

talk to Jim without him interrupting with his foul mouth. They always put him in

bed early to get him out of the hall, so he is in the room with Jim very early

in the evening, the entire time I am visiting. Jim mummbled something and he

shouted, " Shout up old man! " You can't talk to him or he starts yelling even

louder " F---in' Broad Get Out Of My Room! " He thinks it is just his room, he

says he pays the bills for that room. You can't tell him that each roomate pays

the bill. You can't talk to him about anything, because you will always be

wrong and dumb. I have complained to the nurses to take him out while Jim is

dying, I can't talk to Jim, but they say they can't it's his room too. I

whispered a lot of stuff directly into Jim's ear tonight and I think he got it.

Thank you Joan for your support.

Hugs,

Jan

________________________________

From: Joan <mailto:joan_croft%40hotmail.com>

To: mailto:LBDcaregivers%40yahoogroups.com

Sent: Mon, January 17, 2011 5:21:24 PM

Subject: Re: Hi All

Dear Jan,

First I want to respond to the nurse telling you that you cannot feed Jim with a

baby syringe! What is wrong with that...you could get liquid into his mouth in

small quantities where you can't get anything into him through a glass...I

really don't understand that at all...and he is YOUR husband and you are doing

something to help him.

I am so sorry about Jim's current condition. My mom's last days were very

peaceful with hospice letting me know and when to give and up the medications

that help with the agitation that comes with the body shutting down. As Sharon

said in her post, just keep on talking to him and tell him how much joy he has

brought into your life, and especially tell him that you will be OK...if you

have plans of moving closer to your kids, or perhaps just telling him that they

will be there for you if you need them. I think that most people hold on until

they hear that their dearest loved ones will be alright, and to tell him that it

is OK to go to the other side of the door...I told Mom that I was going to hold

on until she got to the door and then she would be able to earn her reward of

eternal life that she had lived for all of her life. Mom did go into a coma two

days before she passed and my brother brought her back, but I don't think that

she wanted to come back. On the afternoon that she passed away she had slipped

into another coma. Not every person has the same experiences, but Jim will be

safe in Jesus' arms and He will be wrapping His spirit around you as you go

through the days that will follow.

Hugs and prayers, Dear Jan,

Joan

>

> Thank you Dorothy, but Jim is in the final stages where he can not swallow. He

> has been on pureed for about a year and on thickened liquids. I was giving Jim

> liquids with a syringe that I bought in the baby aisle at the pharmacy used to

> give babies liquid medication to get liquids in him and he was swallowing

it,

>

>

> but I was told by the staff at the nursing home, I could not use the syringe

>and

>

> they suggested to get a sippy cup. I laughed at that, because I told them Jim

> can not even suck on a straw, how is he going to use a sippy cup? You can't

tip

>

>

> it to drink, it is made purposely not to spill when tipped.

>

> Jim has stopped eating all together, he does drink a little from a cup or I

> still sneak the syringe in and give him sips from that. I can control a little

> drip at a time into his mouth with the syringe. Jim is not swallowing his

> antibiotic for Pneumonia and it is worse.

> Jim is all bones now and very weak.

> I appreciate all you suggestions, but they will not work for Jim since he can

>no

>

> longer swallow at all and will hold the food in his mouth or spit it out, but

> now he is too weak to even open his mouth for food, but he will sip from a cup

>a

>

> little.

> The staff at the facility would feed the people that need to be fed, I believe

> they may have aspirated Jim, because they are on a schedule to get the people

> fed and out and sometimes give them too much at a time. I have seen it. I

>always

>

> made sure to be with Jim for dinner and help him, but I could not be there for

> breakfast and lunch.

> I appreciate your concern and your help.

> Jan

>

>

>

>

> ________________________________

>

> To: mailto:LBDcaregivers%40yahoogroups.com

> Sent: Sun, January 16, 2011 5:14:32 PM

> Subject: RE: Re: Hi All

>

> Â

> Jan I know you are doing all you can. Is someone feeding him and doing all the

> work of getting the food/drink to his mouth so he can put his energy to

> eating/swallowing? I’m curious, did they ask you to get a sippy cup so

it

> doesn’t spill if tipped over or because they thought he would be able

to

>better

>

> suck the fluid out safely? If it’s the former reason it sounds like

they are

> leaving him on his own to eat/drink and that, as was explained to us, is the

> foremost reason people with these swallowing difficulties lose so much weight

> and aspirate. It takes a lot of energy to concentrate and get the food managed

> in the mouth and a good swallow and then even a second or third swallow to

>clear

>

> around the airway so there isn’t residual around the edge of the

windpipe

>that

>

> can fall in. I imagine he is very weak even more so with the infections. Can

he

>

>

> manage a swallow if thickened liquid is spooned in?

>

>

> I’ll share what we are doing just in case it provides something of use

to

>you.

>

> We are doing is pureeing food or cooking soft (soft mechanical diet) and

>someone

>

> has to take a spoon of food the right size, feed her, encourage to chew as

> needed, keeping a hand lightly on the back of the neck to 1) prevent the head

> from going back and 2) encourage chin downward for the swallow, then getting

>her

>

> to say something (asking a question what’s the dog doing, what does the

food

> taste like, etc.) to be sure the airway does not have the gurgly or raspy

sound

>

>

> (other than normal). And then going to the next bite or drink. About 50% of

the

>

>

> time we have to get another swallow to clear the airway because the flap that

> seals over the windpipe during a swallow does not seal off entirely and leaves

>a

>

> residual around the edge of the airpipe. We have been using a straw for

liquids

>

>

> but she is not doing well with it †" the liquids go back into the cup, so

now

> back to thickened liquids out of a cup with a thin rim (easier on the mouth)

>but

>

> she cannot manage it so we are holding it and she is free to concentrate on

the

>

>

> swallow part.

>

>

> Current speech pathologist told me that people will often stop eating/drinking

> if they are having too much trouble with aspiration/choking especially if they

> are left on their own to eat/drink. I’m not at all sure what level of

care a

> facility would provide with eating/drinking and perhaps this amount of

> assistance is more than they provide.

>

>

> If he cannot swallow at all a sippy cup will not help things. I would ask for

> the sp to re evaluate things asap and figure out what’s going on.

>

> I’m sorry, I know you are going through hell right now and wish there

was

> something more I could offer.

>

> Dorothy

>

> From: mailto:LBDcaregivers%40yahoogroups.com

>[mailto:mailto:LBDcaregivers%40yahoogroups.com] On

>

> Behalf Of Janet Colello

> Sent: Sunday, January 16, 2011 3:41 AM

> To: mailto:LBDcaregivers%40yahoogroups.com

> Subject: Re: Re: Hi All

>

> Hi Dorothy,

> The speech pathologist already evaluated Jim last summer and put him on pureed

> foods, before that he was on mechanical soft foods. He was already on

thickened

>

>

> liquids. They had a meeting with me last week and said to get him a sippy cup,

> so he won't aspirate, but he had a hard time with a sippy cup, because it is

> also made not to spill when it tips over so if it is tipped up to drink, he

> can't get anything out of it unless he sucks on the tip, but he doesn't suck.

I

>

>

> went back to the old way using an actual cup, but now he is not drinking or

> eating. He either holds it in his mouth or spits it out. I can't get it into

> him.

> Jan

>

> ________________________________

> From: dsinouye <fullcircle@... <mailto:fullcircle%40sonic.net> >

> To: mailto:LBDcaregivers%40yahoogroups.com

><mailto:LBDcaregivers%40yahoogroups.com>

>

> Sent: Sat, January 15, 2011 2:24:20 PM

> Subject: RE: Re: Hi All

>

> Jan,

>

> Can you get them to bring in a speech pathologist asap to help figure out how

> Jim can swallow (and eat and drink) more safely? Or has this already been

done?

>

>

>

> Dorothy

>

> From: mailto:LBDcaregivers%40yahoogroups.com

><mailto:LBDcaregivers%40yahoogroups.com>

>

> [mailto:mailto:LBDcaregivers%40yahoogroups.com

><mailto:LBDcaregivers%40yahoogroups.com>

>

>]

>

> On

>

> Behalf Of Janet Colello

> Sent: Saturday, January 15, 2011 11:16 AM

> To: mailto:LBDcaregivers%40yahoogroups.com

><mailto:LBDcaregivers%40yahoogroups.com>

>

> Subject: Re: Re: Hi All

>

> Thank you Leona,

> I have read and tried to prepare myself for this time, but I am feeling

>helpless

>

>

>

> and there is nothing I can do, but be there for Jim. It's very hard to watch

>him

>

>

>

> shut down. He has lost so much weight, I don't think there is enough strength

>in

>

>

>

> him to fight this anymore. He has been such a fighter and overcame so many

> obstacles that could have brought him down. It's hard to see him this way. I

> was with him until midnight last evening/this morning.

> It turns out Jim has a UTI and Aspiration Pneumonia and is on an antibiotic as

> of last night that covers both, but he would not swallow the medication.

Leona,

>

>

> only a week ago he was eating his entire meals. I don't know if it is false

> hope, but I am wishing that it is just that he feels so lousy he won't

swallow,

>

>

> but if he gets some antibiotic, he will start to feel better and swallow

again,

>

>

> but maybe I am just having false hope and this is it. I just can't get a grip

>on

>

>

>

> this. No matter how much I have prepared for this moment, it is like I am

>having

>

>

>

> a bad dream. Jim told me he was dying last night in a whispery voice. I feel

> numb just thinking about the loss. A lab tech was in and did a blood test on

>Jim

>

>

>

> yesterday to see if there is an infection in the blood. Jim is my hero, he is

>so

>

>

>

> brave. This dreaded disease tears me apart.

> I need to hear from people like you that have gone through this and survived.

I

>

>

> just can't imagine my life without Jim, but I know I will get through this and

> move on, I just don't know how yet.

> Thank you so much, I appreciate hearing from you.

> Love and Hugs,

> Jan

>

> Leona, this is so true:

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

want

>

>

> to live without. "

>

> ________________________________

> From: Leona Chereshnoski <lchere@... <mailto:lchere%40hughes.net>

> <mailto:lchere%40hughes.net> >

> To: mailto:LBDcaregivers%40yahoogroups.com

><mailto:LBDcaregivers%40yahoogroups.com>

>

> <mailto:LBDcaregivers%40yahoogroups.com>

>

> Sent: Sat, January 15, 2011 10:27:52 AM

> Subject: Re: Hi All

>

> Jan: I have been where you are and feel that I know what you are going

> through. My oldest daughter told me the other day that she thought Dad knew

> that he was ready to go and just quit eating. I felt it was just the course

> of the LBD and it was his time to go. Either way, I am sure Ray wouldn't

> have wanted to continue any longer in the shape he was in. Comfort yourself

> with the knowledge that you have done every thing you could to care for him,

> show your love for him in every way you could and advocated for him

> everytime the opportunity arose. We lived our vows to the end. We also

> realize that he will be in a better place and when we meet them again, they

> will no longer be sick! As you have had the strength to suffer along with

> him every step of the way, you will find the strength to find your way

> through the end time. It has been two years this spring and the tears came

> back as I read your post because the things you are seeing, are the things I

> saw as he faded away. Now, I think often of the things he said and did. I

> smile often as I tell a story or remember a good time we had. You may find

> as I did, that I did a lot of my grieving long before he died. Once I

> realized there were no miracle drugs, or treatments or cures --that he was

> on steep slope fading away, I cried and grieved him 6 months before he died.

> I did not know that is what was going on, but afterward, I realized and

> really handled everything very well. Jan, please know that you and Jim are

> in my prayers and thoughts as you continue down this difficult road. God

> Bless you both!! 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 "

>

>