Re: Hi All

[Guest guest]

Thae Great Gildersleeve,,Fibber Magee & Molly, Lone Ranger and Tonto.

Read all of Mamcy Drew--Cherry Ames,,,oh my,nostalgia

Re: Hi All

. . . hmmmm, kind of like Drew and the

> Hardy boys?!! I'm kind of dating myself, here. I suppose all the

> youngsters have no clue who Drew is! Ah, old age, I'm so

> looking forward to it! (I know, stop with the bad attitude crap!)

>

> Zina

You're a BABY!! I used to read the Bobbsey Twins and watch Fury and

Sky King on TV!!

Janie

[Guest guest]

Reading is one of my favourite pastimes!Cherry Ames was many year's ago.Read all

of Zane Grey,read so many different Author's and types now,must say that drama

is my fav,

Re: Re: Hi All

Cherry Ames..............she was my hero(ine).............still have the

books.....................Meleese

----- Original Message -----

> Thae Great Gildersleeve,,Fibber Magee & Molly, Lone Ranger and

Tonto. Read all of Mamcy Drew--Cherry Ames,,,oh my,nostalgia

Wow, Shirley, you were the reader!! I didn't know about Cherry Ames

as a child, but discovered it as an antique dealer!! I just sold off

a 9 book set of them!!

Janie

[Guest guest]

Hey chicken, add some omegas 3,6 12 and Vitamin B's

Hi All

Hi all,

Well, I've finally come to the conclusion that I'm back to being

hypo. I swear, half my head of hair has fallen out. Even my hubby

noticed all the hair in the hair trapper after we showered this

morning (Gosh, are you still losing hair???). So, I'm increasing my

Armour to 1 3/4 grains (from 1 1/2). I actually started a few days

ago and this time around I'm not feeling any hyper symptoms. Maybe

its the L-Carnitine, or the Pulsatilla? Who knows, all I know is

that I'm gonna be bald before too long. The L-Tyrosine has helped

the my afternoon declines a little bit, but I'm not doing too good

overall. Darn! Just when I thought I had it under control. When

Todd and I get back from Texas and Louisianna, I'll have my ND run

some tests. I want to have my Ferritin tested, maybe I have low

Iron. I'm going to check my Free Testosteron, my female hormones, my

adrenals (the all day test - is that right?), my Free T3 and my TSH

for kicks. Am I missing anything? I was thinking perhaps I'm not

converting, but I take 200 mcg of Selenium each day. I'm also eating

2-3 Brazil nuts each day. So, I don't think I'm low. Any

suggestions are welcome. BTW, my hubby and I are celebrating our 5th

Wedding Anniversary today. He still loves me even though I'm almost

bald! *G*

The Molting Hypo Chick From Montana

[Guest guest]

> Well, I've finally come to the conclusion that I'm back to being

> hypo. I swear, half my head of hair has fallen out. Even my

>hubby noticed all the hair in the hair trapper after we showered

>this morning.So, I'm increasing my Armour to 1 3/4 grains

I identify!! And maybe the increase will be exactly what you need.

If not...yes, it could be your Ferritin. Mine got SO low that my

hair started falling out all over again, just as if I was hypo. I'm

certainly hoping " good speed " in figuring out what it might be for

you.

Janie

[Guest guest]

I already take all those. I've never heard of Omega 12 though. Is

that a new one? I take a combination of Omega 3-6-9, in addition to a

really good fish oil supplement and I use Barlean's High Lignan

Flaxseed oil. I really think I'm covered in this area. I get all

the B vitamins as well. My multiple has them and then I use the

Emer'gen-C powder and it also has the B vitamins in it. I take a ton

of Vitamin C as well.

Zina

> Hey chicken, add some omegas 3,6 12 and Vitamin B's

>

> Hi All

>

>

> Hi all,

>

> Well, I've finally come to the conclusion that I'm back to being

> hypo. I swear, half my head of hair has fallen out. Even my

hubby

> noticed all the hair in the hair trapper after we showered this

> morning (Gosh, are you still losing hair???). So, I'm increasing

my

> Armour to 1 3/4 grains (from 1 1/2). I actually started a few

days

> ago and this time around I'm not feeling any hyper symptoms.

Maybe

> its the L-Carnitine, or the Pulsatilla? Who knows, all I know is

> that I'm gonna be bald before too long. The L-Tyrosine has

helped

> the my afternoon declines a little bit, but I'm not doing too

good

> overall. Darn! Just when I thought I had it under control. When

> Todd and I get back from Texas and Louisianna, I'll have my ND

run

> some tests. I want to have my Ferritin tested, maybe I have low

> Iron. I'm going to check my Free Testosteron, my female

hormones, my

> adrenals (the all day test - is that right?), my Free T3 and my

TSH

> for kicks. Am I missing anything? I was thinking perhaps I'm

not

> converting, but I take 200 mcg of Selenium each day. I'm also

eating

> 2-3 Brazil nuts each day. So, I don't think I'm low. Any

> suggestions are welcome. BTW, my hubby and I are celebrating our

5th

> Wedding Anniversary today. He still loves me even though I'm

almost

> bald! *G*

>

> The Molting Hypo Chick From Montana

>

>

>

[Guest guest]

Hi Janie,

Me too! I stopped taking the L-Carnitine today. The bad part is I

have to wait until next month to have my f/u visit and blood work

done by my ND. So, if its my Ferritin level, my hair will keep

falling out while I'm on vacation. Great. I'm supposed to have my

f/u with him this month, but I will be in Texas/Louisianna. He has

open lines on Tuesdays and Thursdays over the lunch hour, so I'm

going to call him and tell him what is happening. I'm gonna ask him

if it could possibly be the Pulsatilla.

If anything at all, we all are becoming good investigators, aren't

we? Solving mysteries . . . hmmmm, kind of like Drew and the

Hardy boys?!! I'm kind of dating myself, here. I suppose all the

youngsters have no clue who Drew is! Ah, old age, I'm so

looking forward to it! (I know, stop with the bad attitude crap!)

Zina

> > Well, I've finally come to the conclusion that I'm back to being

> > hypo. I swear, half my head of hair has fallen out. Even my

> >hubby noticed all the hair in the hair trapper after we showered

> >this morning.So, I'm increasing my Armour to 1 3/4 grains

>

> I identify!! And maybe the increase will be exactly what you need.

> If not...yes, it could be your Ferritin. Mine got SO low that my

> hair started falling out all over again, just as if I was hypo. I'm

> certainly hoping " good speed " in figuring out what it might be for

> you.

>

> Janie

[Guest guest]

.. . . hmmmm, kind of like Drew and the

> Hardy boys?!! I'm kind of dating myself, here. I suppose all the

> youngsters have no clue who Drew is! Ah, old age, I'm so

> looking forward to it! (I know, stop with the bad attitude crap!)

>

> Zina

You're a BABY!! I used to read the Bobbsey Twins and watch Fury and

Sky King on TV!!

Janie

[Guest guest]

OOPS , 3, 6 and 9 not twelve. Sorry. I get the ones from hsn.com called

essential omega-r with high dha and epa. I looked at the back of the b12 bottle

for the last number, sorry. Also Biotin in high doses helps hair.

Hi All

>

>

> Hi all,

>

> Well, I've finally come to the conclusion that I'm back to being

> hypo. I swear, half my head of hair has fallen out. Even my

hubby

> noticed all the hair in the hair trapper after we showered this

> morning (Gosh, are you still losing hair???). So, I'm increasing

my

> Armour to 1 3/4 grains (from 1 1/2). I actually started a few

days

> ago and this time around I'm not feeling any hyper symptoms.

Maybe

> its the L-Carnitine, or the Pulsatilla? Who knows, all I know is

> that I'm gonna be bald before too long. The L-Tyrosine has

helped

> the my afternoon declines a little bit, but I'm not doing too

good

> overall. Darn! Just when I thought I had it under control. When

> Todd and I get back from Texas and Louisianna, I'll have my ND

run

> some tests. I want to have my Ferritin tested, maybe I have low

> Iron. I'm going to check my Free Testosteron, my female

hormones, my

> adrenals (the all day test - is that right?), my Free T3 and my

TSH

> for kicks. Am I missing anything? I was thinking perhaps I'm

not

> converting, but I take 200 mcg of Selenium each day. I'm also

eating

> 2-3 Brazil nuts each day. So, I don't think I'm low. Any

> suggestions are welcome. BTW, my hubby and I are celebrating our

5th

> Wedding Anniversary today. He still loves me even though I'm

almost

> bald! *G*

>

> The Molting Hypo Chick From Montana

>

>

>

[Guest guest]

*G* Honestly, I've never heard of that book OR those shows!

> . . . hmmmm, kind of like Drew and the

> > Hardy boys?!! I'm kind of dating myself, here. I suppose all

the

> > youngsters have no clue who Drew is! Ah, old age, I'm so

> > looking forward to it! (I know, stop with the bad attitude crap!)

> >

> > Zina

>

> You're a BABY!! I used to read the Bobbsey Twins and watch Fury and

> Sky King on TV!!

>

> Janie

[Guest guest]

Hi Jamy,

After I posted, I thought about that - I thought, she probably meant

B-12! Anyway, I looked on my multiple and it has Biotin in it as

well. I think its either the L-Carnitine, the Pulsatilla, or I have

low Iron. I've been busy all weekend - lots of energy. The L-

Tyrosine sure helps. For some reason during the work week, I poop

out in the afternoon. I don't get that one. Anyway, I've got a few

things I can check out. I stopped taking the L-Carnitine and I've

increase my Armour - so, now I'll wait (patiently - hardly!!) and see

what happens! Thanks.

Zina

>

> OOPS , 3, 6 and 9 not twelve. Sorry. I get the ones from hsn.com

called essential omega-r with high dha and epa. I looked at the back

of the b12 bottle for the last number, sorry. Also Biotin in high

doses helps hair.

[Guest guest]

> Thae Great Gildersleeve,,Fibber Magee & Molly, Lone Ranger and

Tonto. Read all of Mamcy Drew--Cherry Ames,,,oh my,nostalgia

Wow, Shirley, you were the reader!! I didn't know about Cherry Ames

as a child, but discovered it as an antique dealer!! I just sold off

a 9 book set of them!!

Janie

[Guest guest]

Cherry Ames..............she was my hero(ine).............still have the

books.....................Meleese

----- Original Message -----

> Thae Great Gildersleeve,,Fibber Magee & Molly, Lone Ranger and

Tonto. Read all of Mamcy Drew--Cherry Ames,,,oh my,nostalgia

Wow, Shirley, you were the reader!! I didn't know about Cherry Ames

as a child, but discovered it as an antique dealer!! I just sold off

a 9 book set of them!!

Janie

[Guest guest]

And Trixie Belden

Re: Hi All

*G* Honestly, I've never heard of that book OR those shows!

> . . . hmmmm, kind of like Drew and the

> > Hardy boys?!! I'm kind of dating myself, here. I suppose all

the

> > youngsters have no clue who Drew is! Ah, old age, I'm so

> > looking forward to it! (I know, stop with the bad attitude crap!)

> >

> > Zina

>

> You're a BABY!! I used to read the Bobbsey Twins and watch Fury and

> Sky King on TV!!

>

> Janie

[Guest guest]

What is this pullsatilla that you are taking?

Re: Hi All

Hi Jamy,

After I posted, I thought about that - I thought, she probably meant

B-12! Anyway, I looked on my multiple and it has Biotin in it as

well. I think its either the L-Carnitine, the Pulsatilla, or I have

low Iron. I've been busy all weekend - lots of energy. The L-

Tyrosine sure helps. For some reason during the work week, I poop

out in the afternoon. I don't get that one. Anyway, I've got a few

things I can check out. I stopped taking the L-Carnitine and I've

increase my Armour - so, now I'll wait (patiently - hardly!!) and see

what happens! Thanks.

Zina

>

> OOPS , 3, 6 and 9 not twelve. Sorry. I get the ones from hsn.com

called essential omega-r with high dha and epa. I looked at the back

of the b12 bottle for the last number, sorry. Also Biotin in high

doses helps hair.

[Guest guest]

Its a constitutional. Homoeopathy is a method of treating illnesses

which uses very small doses of carefully chosen and prepared

homoeopathic medicines. The medicines promote the body's own power to

heal itself.

Zina

> >

> > OOPS , 3, 6 and 9 not twelve. Sorry. I get the ones from

hsn.com

> called essential omega-r with high dha and epa. I looked at the

back

> of the b12 bottle for the last number, sorry. Also Biotin in high

> doses helps hair.

>

>

>

>

[Guest guest]

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 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]

I am sorry to answer so late, but I have been following your posts ever

since you wrote this on Friday. I know I can't say anything to ease your

grief, it is something that all of us have either gone through or will

be going through at some point, and every single time it is

heartbreaking. But I wanted you to know that I am thinking of you and

Jim, and praying as you go through this most difficult time....

--

His,

Sherry

daughter/guardian of , dx 4/09 with LBD, living in a nearby NH

> 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]

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: 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]

Just wondering if trying to give Jim his antibiotic in ice cream would work.

The cold ice cream could stimulate swallowing, as told to me by a speech

pathologist with Mom. But in the end, she wouldn't open her mouth even for ice

cream. I so feel your helpless pain. You are bringing back memories of Mom's

last days, but not with tears as they would have a couple of years ago.

>

> 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]

Let me try again!

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

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 ,

Jim is where your mom was in the end. He won't open his mouth and if you get

anything in, it just comes out again, because he is not swallowing. He is

drinking a little bit, but not eating. Even tried to put antibiotic in a drink,

but he refuses it. Sad : (   they try to give him his antibiotic everyday and

he

won't take it. They will run out soon of antibiotic and he won't even get a

little bit. I heard today he took about 1/4 crushed antibiotic in liquid this

morning and refused anymore.

, I seem to remember that your husband has a birthday around the same time

as I do. Mine is on Friday. I think I remember we are the same age too.

Do I remember correctly? HAPPY BIRTHDAY TO YOUR HUSBAND!

Jan

________________________________

To: LBDcaregivers

Sent: Mon, January 17, 2011 5:52:28 PM

Subject: Re: Hi All

 

Just wondering if trying to give Jim his antibiotic in ice cream would work. The

cold ice cream could stimulate swallowing, as told to me by a speech pathologist

with Mom. But in the end, she wouldn't open her mouth even for ice cream. I so

feel your helpless pain. You are bringing back memories of Mom's last days, but

not with tears as they would have a couple of years ago.

>

> 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]

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

________________________________

To: LBDcaregivers

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: 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 Janet,

I had read your message the other day and want to say that I am sorry that Jim

has reached this phase of the disease.

This morning I was scrolling down and in your responses to others there were a

few of your words that jumped out at me although I think you had mentioned this

the other day. They were the feelings that you had of being helpless.

For all of these years you have been able to manage and direct Jim's care on an

everyday basis, faithfully, effectively and lovingly.

And now you have reached a moment in which you no longer are able to affect what

happens to him. I understand how hard this must be on you when you helped Jim

do so well up to now. Now you don't have to feel helpless because Jim knows

what you have done and you just being there for him, I'm sure is like a talisman

for him to hold onto.

I'm sure that others have said the same thing and I haven't said anything new,

but I just wanted you to know that because of you not only has Jim lived a much

longer life with the best quality possible but also because of you and your

experiences and advice, my journey with my mom, which is still ongoing, has been

much easier. I have no surprises and am as well prepared as I can be because

you were there. So don't feel helpless. You and Jim have helped more people

than you'll ever know.

Thinking of you,

Doris in Canada: daughter of Ramona, 81yrs old. In NH in Mississauga, Canada,:

dx'd 2005: meds: Seroquel, Reminyl, Wellbutrin, Fosomax and Tylenol.

>

> 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]

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 "

>

>