Re: not eating, drinking much...

February 17, 2011

Hi Dorothy,

First, I want to say that you are an excellent caregiver for your MIL...and a

wonderful advocate to get the doctors to call (but they aren't) and keeping up

with her vitals and everything.

My Mom was in the mild/moderate stage of LBD and just all of a sudden wasn't

hungry, wouldn't eat hardly anything except for ice cream. I did mix Ensure

with ice cream and tell her it was a milk shake. I gave her some chocolate

ensure and told her it was chocolate milk....but solid food was a whole diffrent

story. She might eat one day and then not for several more days.

The hospital had wanted to put a feeding tube in her, and I asked to have

another week to see if she would start to eat again. When I took her to the

hospital again, they told me that she was in the dying process and feeding tubes

or IV fluids would only prolong her dying. I didn't want to do that to her. If

they were not going to make her well adn let her live more months or years...but

to just prolong her remaining days by being hooked up to tubes and IVs...that

isn't what she wanted.

Your MIL, might just be going through a phase and will all of a sudden start

eating, drinking normally again. You may not know now, but it could happen.

But, you are thinking very wisely...she may be waiting so that your husband and

his sister can speak with her and pour out their hearts before she leaves this

earth. It sounds like your MIL has the most contact with you. Have your husband

get in touch with his sister and tell her that she really needs to come and

visit Mom. That is the first thing that needs to be done so she is able to come

and have some time with her.

My mom always told me that she didn't want to live if she had dementia. With

the fluctuating cognition, she knew she had dementia and therefore I think that

she just lost her will to live. She didn't want to live if she had dementia.

Your MIL may be thinking when in her 'MIL' mode rather than the 'LBD MIL' mode

that she doesn't want to live this way.

A word on hospice: We had hospice for the last two weeks of Mom's life. They

made it so easy to keep her comfortable and Mom actually went through the

process comfortably and her passing was peaceful. I just can't say enough about

our hospice experience.

Please keep us posted on the status of your MIL.

Hugs and prayers,

Joan

>

> The latest marathon for us.

>

> My mil was in hospital 4 days with another UTI that was going into sepsis.

> What a horrible ordeal this is becoming.

>

> Her doctor's office reorganized with new affiliation with the St ph

> hospital chain and it is almost impossible to get things accomplished now,

> including a quick follow up UA ordered via home care to see if the UTI was

> cleared up or not. Her last septra ds was Sunday Jan 30 and she was so much

> better, happy, walking, eating and drinking fairly well but by Wednesday,

> Feb 1 she was cranky and tired and another fever and it was obvious to me

> she should be put back on the septra however her nurse with Home health was

> off for the rest of the week and no one forwarded my calls to the RN on call

> and my calls to her doctor (several a day) went unanswered. Her temp went

> up that Friday. Sunday am, a week after ending antibiotic, she had diarrhea

> and vomiting and we took her to a hospital ER and the doctor told us she had

> viral gastroenteritis and a uti and take her home and make her drink water

> and call her doctor in the morning. That Monday, Feb. Feb 7 called her

> doctor's office, was told he's with patients, left another message. Called

> again at 11:30 am, called again at 3pm. Snippy office staff tell me

> everyone's with patients and they have my messages. I can tell they are

> irritated with my phone calls by now. 4pm her temp went up and she went

> into another world so I decided we would go to another ER. They ended up

> admitting her with uti, dehydration and sepsis. They kept her 4 days and

> we had someone there round the clock so no one would aspirate her with

> giving pills or food/drink. She got very nicely plumped up with the iv

> fluids and had a infection that ampicillin would take care of so we came

> home. They did a fecal for viral gastroenteritis and c-diff and both are

> negative. So the first ER doc was way off on that. But still no

> explanation for the persistent diarrhea.

>

> She's a little better than when she got home but the diarrhea continues - it

> never stopped. She is getting dehydrated again rapidly and I can barely get

> two glasses worth of liquids in her a day. She does not want to drink

> anything but coffee with a lot of cream and sugar and even that she doesn't

> want much. She's almost fighting about pills in the applesauce. and even

> her favorite foods she wants just a little and that's it. I've been giving

> her applesauce as if it has pills just because it has some liquid in it and

> she doesn't argue with me like she does with the caregiver.

>

> I don't know what to do. She tells me she wants to get better. I tell her

> she has to do it for her, not for us. That we are happy with whatever her

> decision is. If she wants to have a peaceful end of life we support her

> 100%. If she wants to fight and get " better " as she was before hospital

> we'll support her in that, whatever she wants. Even when she tells me she

> wants to get well I have the feeling she's just saying that for our benefit.

> I have in the last three days had serious talks with her explaining hospice

> and what happens and also why I'm telling her (because it's coming to the

> point even home health is suggesting it). I don't know if I should push to

> try and keep her hydrated with some kind of iv fluids and see if she can

> recover or if I should just go with hospice now. I think if we did go

> with hospice she would probably be gone in a month or two with the not

> eating/not drinking much. We have a different home health agency now, in

> hopes they will be more attentive to her needs. They have a program called

> Advanced Illness Management that Medicare covers and is considered a

> precursor to hospice. This is through Sutter VNA, who also provides hospice

> services that are less militant than the other outfit in town.

>

> I always had it in my mind that she would be bedbound and barely able to

> move if she was going to die from LBD but now I wonder if my idea is way

> off? There is nothing else medically wrong that could be causing the

> appetite and thirst decreasing. That's what the hospitalist told us and he

> was her private doctor for 11 years before he closed his private practice

> (we were all very happy with this doc, he is a great diagnostician and takes

> whatever time required to figure out what needs to be done). Everything

> I've read about end of life with LBD people are bed-bound and barely able to

> move. My mil can still get up out of bed with a little assistance and walk

> with assistance and even walk up and down the 7 steps at the front door with

> assistance and climb into my suv with assistance. Most of the assistance

> she needs is with balance/fall prevention and coaching (lift feet, move

> toward me, reach up here, etc.) She's worked hard in physical therapy and

> exercise and I'm wondering could she have exercised enough that she's truly

> at the end of life stage of this disease and still able to move about?

> Everyone is impressed by how strong she is, even if she were not ill and a

> normal 93 year old. I think maybe this is what is really throwing us off

> here. Granted her moving is with more and more effort and is much harder

> than it was a few months ago. And even swallowing is with great effort.

>

> Anyway, this is our dilemma, is it time for hospice or should we give her

> more time to recover from the uti? Even recovery from the uti is now in

> doubt as they are talking about keeping her on antibiotics because she is

> not taking in enough liquids to keep things flushed out and eventually we

> are told she will likely get a uti that will do her in. Some have

> suggested tubes - and unfortunately because of the massive giant hiatal

> hernia she has no one will try to place any kind of tube, j, peg or ng. IV

> is suggested by speech pathologist due to the problem she has drinking

> fluids, but home health wasn't too keen on that.

>

> My grief has been right up in my throat again today and I've had to run to

> the back room to cry then dry my eyes then come back smiling for a while

> longer before I choke and have to run back and cry again. I'm going to miss

> her so much but this is about her and what she needs, not what I or my

> husband needs. We have not even tried to talk to his sister about this yet

> as she is very out of touch with this and send a huge box of chocolates with

> nuts for Valentine's Day. Sigh. Sorry I'm pretty tired and this is

> probably sounding very scattered.

>

> Really appreciate hearing thoughts. Thank you.

>

> Dorothy

>

February 17, 2011

Dear Dorothy,

Reading your post has brought back many memories of my husband. Only a few

months ago he was eating well. He was not able to walk for many years, but he

still had weight bearing and he could pull himself up to a stand with

assistanceÂ holding a handicap bar or just to stretch his legs. His hands were

strong. I called him Velcro Man, because he clung onto everything we passed and

heÂ had such a strong grip, it was hard to pry him loose.Â He had many UTIs and

was hospitalized twice for Sepsis in years past, which miraculously he overcame.

Hospice was with him on one of those Sepsis illnesses and another time I slept

in his hospital room for 5 days, he was in for 10 days. When I saw him getting

stronger andÂ better I started going home. He had a Will to live.

My husband would dehydrate easily. I brought Gatorade to the nursing homeÂ to

hydrate him everyday. He had to have it thickened,so I had " Thick It. " I gave it

to him often. Sometimes he would not drink from the rim of the cup, so I gave it

to him with a syringe until he finished an entire cup. I also brought in bottled

vitaminÂ water with electrolytes. Electrolytes are also good for diarrhea.

Then in the early part of thisÂ January, he began to lose interest in eating and

drinking. AndÂ at the end of this January, he had Aspiration Pneumonia from

swallowing issues. The Speech Therapist had him on pureed foods and thickened

liquids. Within a few weeks from the New Year, he went downhill and refused to

swallow his crushed antibiotic. He had in his Health Directive that he did not

want any life supports, so they did not give him an antibiotic IV to help him

recover from the Pneumonia only to come back to swallowing issues and start all

over again. He starved and dehydrated for 6 days and looked likeÂ a personÂ in a

concentration camp. He was never bedridden until the last two weeks of his

illness when he turned extremely weak. The CNAs at the nursing home had to show

me how to help turn him, so his skin didn't tear or break his bones, he was so

frail. It was so sudden within halfÂ a month's time this all happened.

I understand your leaving the room to cry and put on your smile when you return.

I did that myself. It is very heart wrenching to see your LO in the process of

dying. Every person is different in their process of dying and I am not saying

yourÂ MIL is ready, but just know they can be joyful and playful with you and

suddenly be on the down-turnÂ so fast. At times Jim wasÂ on a down-turnÂ and I

thought it was time, but he would regain strength and come back as with

theÂ Sepsis he had, so you never know. This time I knew, because he was too weak

to turn around from starvation and dehydration and he wasn't swallowing, but

holding the food and drink in his mouth. I had to clean his mouth out a few

times a day from food held in it. When they stop eating, they totally stop. If

yourÂ MIL is even swallowing a little that is good.Â Give her a little more each

day. Because they are like anyone on a diet, their stomach will shrink with very

little food and they lose their apetite to eat much. As long as Jim was still

swallowing, I would give him a little food at a time and each day a little

moreÂ until he would finish a plate full. Sometimes he would self-feed and other

times I helped him. I found a soft plastic spoon was easier to press under his

teeth to get food into his mouth, because sometime he would grit his teeth

together and it was hard to get food into his mouth, he couldn't remember how to

open his teeth at times, he wasn't trying to keep me out.Â If the food was

soupy,

I could use the syringe and place it to the back and side of his mouth and

release it and he would swallow. As long as they have swallowing ability make an

effort to get food in, because as their stomach shrinks they will have no

apetite to eat after awhile.

I chose to help myÂ husband, because he showed me so many times his will to

live,

but sometimes now, I think it might have been best to let things ride as they

were and notÂ help him go to the end stage, which is so horrible and scary when

they actually can not swallow. I saw fear in his eyes.

I am glad my husband had a Health Directive in what he wanted, because as you

say, are we choosing to hang onto them? In some way I might have been, but in my

mind as I say, Jim showed me so many times his Will to live by fighting

backÂ and

I believed I was helping him do that, but I never had any idea how awful to see

the end stage when there is nothing anyone can do, but let the process take

place. I was helpless to do anything for my husband at that point.

The best to you in your decisions for your MIL's well-being, It's very hard and

I feel for you. But know that she could pop back up and be herself again and

surprise you. LBD is funny that way, it can change rapidly from day to day. You

never know what you have.

Take Care Dorothy, you are a great DIL to your MIL and she is very lucky to have

someone like you that cares so much for her.

Hugs to you.

Jan Colello

San Francisco Bay Area, California

Husband, Jim, dx w/LBD Oct. 2003

Deceased, January 22, 2011

Â

________________________________

To: LBDcaregivers

Sent: Wed, February 16, 2011 11:02:38 PM

Subject: not eating, drinking much...

Â

The latest marathon for us.

My mil was in hospital 4 days with another UTI that was going into sepsis.

What a horrible ordeal this is becoming.

Her doctor's office reorganized with new affiliation with the St ph

hospital chain and it is almost impossible to get things accomplished now,

including a quick follow up UA ordered via home care to see if the UTI was

cleared up or not. Her last septra ds was Sunday Jan 30 and she was so much

better, happy, walking, eating and drinking fairly well but by Wednesday,

Feb 1 she was cranky and tired and another fever and it was obvious to me

she should be put back on the septra however her nurse with Home health was

off for the rest of the week and no one forwarded my calls to the RN on call

and my calls to her doctor (several a day) went unanswered. Her temp went

up that Friday. Sunday am, a week after ending antibiotic, she had diarrhea

and vomiting and we took her to a hospital ER and the doctor told us she had

viral gastroenteritis and a uti and take her home and make her drink water

and call her doctor in the morning. That Monday, Feb. Feb 7 called her

doctor's office, was told he's with patients, left another message. Called

again at 11:30 am, called again at 3pm. Snippy office staff tell me

everyone's with patients and they have my messages. I can tell they are

irritated with my phone calls by now. 4pm her temp went up and she went

into another world so I decided we would go to another ER. They ended up

admitting her with uti, dehydration and sepsis. They kept her 4 days and

we had someone there round the clock so no one would aspirate her with

giving pills or food/drink. She got very nicely plumped up with the iv

fluids and had a infection that ampicillin would take care of so we came

home. They did a fecal for viral gastroenteritis and c-diff and both are

negative. So the first ER doc was way off on that. But still no

explanation for the persistent diarrhea.

She's a little better than when she got home but the diarrhea continues - it

never stopped. She is getting dehydrated again rapidly and I can barely get

two glasses worth of liquids in her a day. She does not want to drink

anything but coffee with a lot of cream and sugar and even that she doesn't

want much. She's almost fighting about pills in the applesauce. and even

her favorite foods she wants just a little and that's it. I've been giving

her applesauce as if it has pills just because it has some liquid in it and

she doesn't argue with me like she does with the caregiver.

I don't know what to do. She tells me she wants to get better. I tell her

she has to do it for her, not for us. That we are happy with whatever her

decision is. If she wants to have a peaceful end of life we support her

100%. If she wants to fight and get " better " as she was before hospital

we'll support her in that, whatever she wants. Even when she tells me she

wants to get well I have the feeling she's just saying that for our benefit.

I have in the last three days had serious talks with her explaining hospice

and what happens and also why I'm telling her (because it's coming to the

point even home health is suggesting it). I don't know if I should push to

try and keep her hydrated with some kind of iv fluids and see if she can

recover or if I should just go with hospice now. I think if we did go

with hospice she would probably be gone in a month or two with the not

eating/not drinking much. We have a different home health agency now, in

hopes they will be more attentive to her needs. They have a program called

Advanced Illness Management that Medicare covers and is considered a

precursor to hospice. This is through Sutter VNA, who also provides hospice

services that are less militant than the other outfit in town.

I always had it in my mind that she would be bedbound and barely able to

move if she was going to die from LBD but now I wonder if my idea is way

off? There is nothing else medically wrong that could be causing the

appetite and thirst decreasing. That's what the hospitalist told us and he

was her private doctor for 11 years before he closed his private practice

(we were all very happy with this doc, he is a great diagnostician and takes

whatever time required to figure out what needs to be done). Everything

I've read about end of life with LBD people are bed-bound and barely able to

move. My mil can still get up out of bed with a little assistance and walk

with assistance and even walk up and down the 7 steps at the front door with

assistance and climb into my suv with assistance. Most of the assistance

she needs is with balance/fall prevention and coaching (lift feet, move

toward me, reach up here, etc.) She's worked hard in physical therapy and

exercise and I'm wondering could she have exercised enough that she's truly

at the end of life stage of this disease and still able to move about?

Everyone is impressed by how strong she is, even if she were not ill and a

normal 93 year old. I think maybe this is what is really throwing us off

here. Granted her moving is with more and more effort and is much harder

than it was a few months ago. And even swallowing is with great effort.

Anyway, this is our dilemma, is it time for hospice or should we give her

more time to recover from the uti? Even recovery from the uti is now in

doubt as they are talking about keeping her on antibiotics because she is

not taking in enough liquids to keep things flushed out and eventually we

are told she will likely get a uti that will do her in. Some have

suggested tubes - and unfortunately because of the massive giant hiatal

hernia she has no one will try to place any kind of tube, j, peg or ng. IV

is suggested by speech pathologist due to the problem she has drinking

fluids, but home health wasn't too keen on that.

My grief has been right up in my throat again today and I've had to run to

the back room to cry then dry my eyes then come back smiling for a while

longer before I choke and have to run back and cry again. I'm going to miss

her so much but this is about her and what she needs, not what I or my

husband needs. We have not even tried to talk to his sister about this yet

as she is very out of touch with this and send a huge box of chocolates with

nuts for Valentine's Day. Sigh. Sorry I'm pretty tired and this is

probably sounding very scattered.

Really appreciate hearing thoughts. Thank you.

Dorothy

February 18, 2011

Is your sister taking Rispradol? My mom could not hold her head up without

severe pain when she was taking that.

> >

> > The latest marathon for us.

> >

> > My mil was in hospital 4 days with another UTI that was going into sepsis.

> > What a horrible ordeal this is becoming.

> >

> > Her doctor's office reorganized with new affiliation with the St ph

> > hospital chain and it is almost impossible to get things accomplished now,

> > including a quick follow up UA ordered via home care to see if the UTI was

> > cleared up or not. Her last septra ds was Sunday Jan 30 and she was so much

> > better, happy, walking, eating and drinking fairly well but by Wednesday,

> > Feb 1 she was cranky and tired and another fever and it was obvious to me

> > she should be put back on the septra however her nurse with Home health was

> > off for the rest of the week and no one forwarded my calls to the RN on call

> > and my calls to her doctor (several a day) went unanswered. Her temp went

> > up that Friday. Sunday am, a week after ending antibiotic, she had diarrhea

> > and vomiting and we took her to a hospital ER and the doctor told us she had

> > viral gastroenteritis and a uti and take her home and make her drink water

> > and call her doctor in the morning. That Monday, Feb. Feb 7 called her

> > doctor's office, was told he's with patients, left another message. Called

> > again at 11:30 am, called again at 3pm. Snippy office staff tell me

> > everyone's with patients and they have my messages. I can tell they are

> > irritated with my phone calls by now. 4pm her temp went up and she went

> > into another world so I decided we would go to another ER. They ended up

> > admitting her with uti, dehydration and sepsis. They kept her 4 days and

> > we had someone there round the clock so no one would aspirate her with

> > giving pills or food/drink. She got very nicely plumped up with the iv

> > fluids and had a infection that ampicillin would take care of so we came

> > home. They did a fecal for viral gastroenteritis and c-diff and both are

> > negative. So the first ER doc was way off on that. But still no

> > explanation for the persistent diarrhea.

> >

> > She's a little better than when she got home but the diarrhea continues - it

> > never stopped. She is getting dehydrated again rapidly and I can barely get

> > two glasses worth of liquids in her a day. She does not want to drink

> > anything but coffee with a lot of cream and sugar and even that she doesn't

> > want much. She's almost fighting about pills in the applesauce. and even

> > her favorite foods she wants just a little and that's it. I've been giving

> > her applesauce as if it has pills just because it has some liquid in it and

> > she doesn't argue with me like she does with the caregiver.

> >

> > I don't know what to do. She tells me she wants to get better. I tell her

> > she has to do it for her, not for us. That we are happy with whatever her

> > decision is. If she wants to have a peaceful end of life we support her

> > 100%. If she wants to fight and get " better " as she was before hospital

> > we'll support her in that, whatever she wants. Even when she tells me she

> > wants to get well I have the feeling she's just saying that for our benefit.

> > I have in the last three days had serious talks with her explaining hospice

> > and what happens and also why I'm telling her (because it's coming to the

> > point even home health is suggesting it). I don't know if I should push to

> > try and keep her hydrated with some kind of iv fluids and see if she can

> > recover or if I should just go with hospice now. I think if we did go

> > with hospice she would probably be gone in a month or two with the not

> > eating/not drinking much. We have a different home health agency now, in

> > hopes they will be more attentive to her needs. They have a program called

> > Advanced Illness Management that Medicare covers and is considered a

> > precursor to hospice. This is through Sutter VNA, who also provides hospice

> > services that are less militant than the other outfit in town.

> >

> > I always had it in my mind that she would be bedbound and barely able to

> > move if she was going to die from LBD but now I wonder if my idea is way

> > off? There is nothing else medically wrong that could be causing the

> > appetite and thirst decreasing. That's what the hospitalist told us and he

> > was her private doctor for 11 years before he closed his private practice

> > (we were all very happy with this doc, he is a great diagnostician and takes

> > whatever time required to figure out what needs to be done). Everything

> > I've read about end of life with LBD people are bed-bound and barely able to

> > move. My mil can still get up out of bed with a little assistance and walk

> > with assistance and even walk up and down the 7 steps at the front door with

> > assistance and climb into my suv with assistance. Most of the assistance

> > she needs is with balance/fall prevention and coaching (lift feet, move

> > toward me, reach up here, etc.) She's worked hard in physical therapy and

> > exercise and I'm wondering could she have exercised enough that she's truly

> > at the end of life stage of this disease and still able to move about?

> > Everyone is impressed by how strong she is, even if she were not ill and a

> > normal 93 year old. I think maybe this is what is really throwing us off

> > here. Granted her moving is with more and more effort and is much harder

> > than it was a few months ago. And even swallowing is with great effort.

> >

> > Anyway, this is our dilemma, is it time for hospice or should we give her

> > more time to recover from the uti? Even recovery from the uti is now in

> > doubt as they are talking about keeping her on antibiotics because she is

> > not taking in enough liquids to keep things flushed out and eventually we

> > are told she will likely get a uti that will do her in. Some have

> > suggested tubes - and unfortunately because of the massive giant hiatal

> > hernia she has no one will try to place any kind of tube, j, peg or ng. IV

> > is suggested by speech pathologist due to the problem she has drinking

> > fluids, but home health wasn't too keen on that.

> >

> > My grief has been right up in my throat again today and I've had to run to

> > the back room to cry then dry my eyes then come back smiling for a while

> > longer before I choke and have to run back and cry again. I'm going to miss

> > her so much but this is about her and what she needs, not what I or my

> > husband needs. We have not even tried to talk to his sister about this yet

> > as she is very out of touch with this and send a huge box of chocolates with

> > nuts for Valentine's Day. Sigh. Sorry I'm pretty tired and this is

> > probably sounding very scattered.

> >

> > Really appreciate hearing thoughts. Thank you.

> >

> > Dorothy

> >

February 20, 2011

Hmmm...perhaps you need to talk to her doctor about that. I just remember how

the neck hurt her so much and if I tried to help her head stay up, she would

scream with the pain.

> > >

> > > The latest marathon for us.

> > >

> > > My mil was in hospital 4 days with another UTI that was going into sepsis.

> > > What a horrible ordeal this is becoming.

> > >

> > > Her doctor's office reorganized with new affiliation with the St ph

> > > hospital chain and it is almost impossible to get things accomplished now,

> > > including a quick follow up UA ordered via home care to see if the UTI was

> > > cleared up or not. Her last septra ds was Sunday Jan 30 and she was so

much

> > > better, happy, walking, eating and drinking fairly well but by Wednesday,

> > > Feb 1 she was cranky and tired and another fever and it was obvious to me

> > > she should be put back on the septra however her nurse with Home health

was

> > > off for the rest of the week and no one forwarded my calls to the RN on

call

> > > and my calls to her doctor (several a day) went unanswered. Her temp went

> > > up that Friday. Sunday am, a week after ending antibiotic, she had

diarrhea

> > > and vomiting and we took her to a hospital ER and the doctor told us she

had

> > > viral gastroenteritis and a uti and take her home and make her drink water

> > > and call her doctor in the morning. That Monday, Feb. Feb 7 called her

> > > doctor's office, was told he's with patients, left another message. Called

> > > again at 11:30 am, called again at 3pm. Snippy office staff tell me

> > > everyone's with patients and they have my messages. I can tell they are

> > > irritated with my phone calls by now. 4pm her temp went up and she went

> > > into another world so I decided we would go to another ER. They ended up

> > > admitting her with uti, dehydration and sepsis. They kept her 4 days and

> > > we had someone there round the clock so no one would aspirate her with

> > > giving pills or food/drink. She got very nicely plumped up with the iv

> > > fluids and had a infection that ampicillin would take care of so we came

> > > home. They did a fecal for viral gastroenteritis and c-diff and both are

> > > negative. So the first ER doc was way off on that. But still no

> > > explanation for the persistent diarrhea.

> > >

> > > She's a little better than when she got home but the diarrhea continues -

it

> > > never stopped. She is getting dehydrated again rapidly and I can barely

get

> > > two glasses worth of liquids in her a day. She does not want to drink

> > > anything but coffee with a lot of cream and sugar and even that she

doesn't

> > > want much. She's almost fighting about pills in the applesauce. and even

> > > her favorite foods she wants just a little and that's it. I've been giving

> > > her applesauce as if it has pills just because it has some liquid in it

and

> > > she doesn't argue with me like she does with the caregiver.

> > >

> > > I don't know what to do. She tells me she wants to get better. I tell her

> > > she has to do it for her, not for us. That we are happy with whatever her

> > > decision is. If she wants to have a peaceful end of life we support her

> > > 100%. If she wants to fight and get " better " as she was before hospital

> > > we'll support her in that, whatever she wants. Even when she tells me she

> > > wants to get well I have the feeling she's just saying that for our

benefit.

> > > I have in the last three days had serious talks with her explaining

hospice

> > > and what happens and also why I'm telling her (because it's coming to the

> > > point even home health is suggesting it). I don't know if I should push to

> > > try and keep her hydrated with some kind of iv fluids and see if she can

> > > recover or if I should just go with hospice now. I think if we did go

> > > with hospice she would probably be gone in a month or two with the not

> > > eating/not drinking much. We have a different home health agency now, in

> > > hopes they will be more attentive to her needs. They have a program called

> > > Advanced Illness Management that Medicare covers and is considered a

> > > precursor to hospice. This is through Sutter VNA, who also provides

hospice

> > > services that are less militant than the other outfit in town.

> > >

> > > I always had it in my mind that she would be bedbound and barely able to

> > > move if she was going to die from LBD but now I wonder if my idea is way

> > > off? There is nothing else medically wrong that could be causing the

> > > appetite and thirst decreasing. That's what the hospitalist told us and he

> > > was her private doctor for 11 years before he closed his private practice

> > > (we were all very happy with this doc, he is a great diagnostician and

takes

> > > whatever time required to figure out what needs to be done). Everything

> > > I've read about end of life with LBD people are bed-bound and barely able

to

> > > move. My mil can still get up out of bed with a little assistance and walk

> > > with assistance and even walk up and down the 7 steps at the front door

with

> > > assistance and climb into my suv with assistance. Most of the assistance

> > > she needs is with balance/fall prevention and coaching (lift feet, move

> > > toward me, reach up here, etc.) She's worked hard in physical therapy and

> > > exercise and I'm wondering could she have exercised enough that she's

truly

> > > at the end of life stage of this disease and still able to move about?

> > > Everyone is impressed by how strong she is, even if she were not ill and a

> > > normal 93 year old. I think maybe this is what is really throwing us off

> > > here. Granted her moving is with more and more effort and is much harder

> > > than it was a few months ago. And even swallowing is with great effort.

> > >

> > > Anyway, this is our dilemma, is it time for hospice or should we give her

> > > more time to recover from the uti? Even recovery from the uti is now in

> > > doubt as they are talking about keeping her on antibiotics because she is

> > > not taking in enough liquids to keep things flushed out and eventually we

> > > are told she will likely get a uti that will do her in. Some have

> > > suggested tubes - and unfortunately because of the massive giant hiatal

> > > hernia she has no one will try to place any kind of tube, j, peg or ng. IV

> > > is suggested by speech pathologist due to the problem she has drinking

> > > fluids, but home health wasn't too keen on that.

> > >

> > > My grief has been right up in my throat again today and I've had to run to

> > > the back room to cry then dry my eyes then come back smiling for a while

> > > longer before I choke and have to run back and cry again. I'm going to

miss

> > > her so much but this is about her and what she needs, not what I or my

> > > husband needs. We have not even tried to talk to his sister about this yet

> > > as she is very out of touch with this and send a huge box of chocolates

with

> > > nuts for Valentine's Day. Sigh. Sorry I'm pretty tired and this is

> > > probably sounding very scattered.

> > >

> > > Really appreciate hearing thoughts. Thank you.

> > >

> > > Dorothy

> > >

February 25, 2011

,

This sounds very similar. She does not want to do things and I hear the most

bizarre reasons for it â€“ â€œthey hurt me, they say Iâ€™m not supposed to

(drink, eat it, get in the shower, etc.)â€ I have not seen a movie or much of

anything on it â€“ Iâ€™ve seen some things on you-tube and read a lot online but

that is about all Iâ€™ve had time for other than learning in the trenches here.

Iâ€™ve a couple part time caregivers and they have been helpful â€“ been here

done this with other families before â€“ so they have been somewhat guiding in

how this can go. This morning when Lucy got here and learned the hallucinations

are starting in earnest she just said â€œOh, this is how it goes, now we are in

this stageâ€¦â€ and told me about how she has managed it with others, which

seems reasonable and logical. I hope it can be this way. I am afraid what if

â€“ what if something severe happens and she becomes a danger to herself or

others and I need to find a hospital with a mental wing to put her in and get

her stabilized? What then â€“ because to my knowledge we donâ€™t have any of

those up here in Santa . Or at least no oneâ€™s explained it to me and I

have been asking this question all week with nursing and her doctor.

They have offered us visits from a chaplain and Iâ€™m going to get that set up

asap. Maybe it would do some good for my mil and I hope it will help us all.

As hard as this is Iâ€™m learning, Iâ€™m growing, I know I will never be the

same and I will have more empathy and compassion for others going through this

than I could have ever mustered not knowing what it is. Maybe thatâ€™s

something good that will come of it since they are foretelling an epidemic of

it. Itâ€™s helpful to have something positive.

Last night the VNA RN on call told me to try relaxing music, warm heating pad,

warm milk with some honey and even a shot of brandy or rum. Could not find any

music that matched my mil last night, the heat pad was a big worry she thought

it was going to burn her, the warm milk with honey and some irish mist was

suspicious and she thought I was trying to get her drunk. I bribed her with

cookies and eventually she relaxed a little. 3 hours sleep. Then hollering

again. I gave her the second trazadone and mirapex because she was yelling her

legs hurt too. She slept two more hours then hollered the rest of the morning.

I had to make sure she was safe and close the door and turn down the monitor but

my sleep was not restful. This morning I woke up â€“ no snow here as forecast

(wow but itâ€™s cold!) and for the first time thought maybe I canâ€™t do thisâ€¦

and if I keep trying I could be killing myself trying to do it. But I donâ€™t

know what else to do because she has medi cal and there are not many decent

places here.

Today the social worker is coming â€“ Iâ€™ve been waiting for this visit that

Iâ€™m told will be helpful. Then I can get her into the Advanced Illness

Management program and then perhaps they will say weâ€™re ready to try hospice.

Iâ€™ve been hearing it for awhile but with her doctor saying, â€œno not yetâ€

itâ€™s not happening. I wonder if hospice would be the best thing for her at

this point to get her comfortable.

I sure know what you mean about minds never resting when not asleep. I found

that my mil was very tired but she cannot calm herself. Last night I swaddled

her like a baby so her arms couldnâ€™t thrash around and that might have helped

a little. Also I sat and kept telling her to close her eyes. As her eyes were

closed her breathing slowed and relaxed, face relaxed, eventually she went to

sleep, albeit light sleep. I had to stay there and keep telling her, â€œClose

your eyesâ€ when her eyes sprung open. So strange. I wonder if a sleep mask

would be helpful or not.

Thank you, sending you a couple of big gentle hugs and be sure to pull one out

when you need it

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of hibbittsjenn@...

Sent: Friday, February 25, 2011 4:37 AM

To: LBDcaregivers

Subject: Re: not eating, drinking much...

Dorothy:

I understand what you're going through. My sister gets agitated very easily.

When I'm with her, I don't sit down. She is constantly telling me to do things,

crazy things, and to hurry. I can never do things fast enough. I have to get

children ready for school, clean up messes people have made, make sure everybody

has a bed to sleep in, etc. It can be very exhausting. My sister sits most of

the time with her eyes, but yet she sees all these things. She eats very little,

can't walk without assistance, stays constipated which creates other issues. She

is however, still going to the bathroom with assistance. My sister has always

been a very particular person about her personal hygiene and her home. But now

she gives the home health people a fit when they come to give her a shower and

usually refuses! She tells me it hurts too bad and they beat her up.

She is taking Risperdal and Adivan. I know Adivan isn't recommended and we

really questioned it, but it has helped some with the fear ,crying spells and

the hallucinations aren't as bad. It just seems her mind never rest unless she

is asleep.

I really don't know what stage we're in. I watched a video " Living with Lewy

Bodys " and it scares me seeing how my sister is like the gentleman in the video.

I know my sister's heart is right with God and I have decided to pray's God's

will, not mine. I believe as long as we have a breath in our body, God has a

purpose, but it is so hard to see her dealing with this awful disease. I just

want her to have peace.

not eating, drinking much...