Re:Swallow evaluation requested

[Guest guest]

The nurse told me today that they have asked for a swallow eval on Ray. He

had two within the last month in the other NH but now we are getting very

little food of any kind down him and they want to see if he is able to

swallow at all. I really think it all stems from his post nasal drip and

heavy amounts of mucous dropping into his throat and that is what probably

caused him to have pneumonia this past week. They think it was from

aspiration. Every time he tries to eat and drink, he coughs and chokes.

Consequently, we are not able to get much down him.

My question is a deep one: We have agreed to no feeding tubes or anything

to prolong Ray's life when normal body functions cease to work. If this

problem is caused from this mucous drip, am I hastening Ray's death if I

refuse a feeding tube or something? Should I ask for an ENT to see him

perhaps? Or is this just one more symptom of the 5th phase of LBD?

Tomorrow's care meeting may be very stressful for me, I fear. Thanks folks,

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.

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

want to live without.'

[Guest guest]

I can only share what Mother (has LBD) decided- we will do what adds to her

quality of life and wont do what only add to the quantity of life. That is the

only criteria we use. for example we use accupuncture to help with the pain

Sharon T

>

> The nurse told me today that they have asked for a swallow eval on Ray. He

> had two within the last month in the other NH but now we are getting very

> little food of any kind down him and they want to see if he is able to

> swallow at all. I really think it all stems from his post nasal drip and

> heavy amounts of mucous dropping into his throat and that is what probably

> caused him to have pneumonia this past week. They think it was from

> aspiration. Every time he tries to eat and drink, he coughs and chokes.

> Consequently, we are not able to get much down him.

>

> My question is a deep one: We have agreed to no feeding tubes or anything

> to prolong Ray's life when normal body functions cease to work. If this

> problem is caused from this mucous drip, am I hastening Ray's death if I

> refuse a feeding tube or something? Should I ask for an ENT to see him

> perhaps? Or is this just one more symptom of the 5th phase of LBD?

> Tomorrow's care meeting may be very stressful for me, I fear. Thanks folks,

> 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.

>

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

> want to live without.'

>

[Guest guest]

Hi Leona,

My dad developed the swallowing problems as he progressed also. I think it is

part of the progression of the Parkinsons aspects of the disease and part of the

dementia. However, since you said he has had pneumonia, that may also be making

things temporarily worse. Any time my dad had an infection or medical problems,

his functional ability would slip....and then possibly recover some when he got

to feeling better. I assume they have already adjusted his diet to pureed foods

or thickened liquids. If not, you may want to consider that.

It is one of those difficult situations that arises. We dealt with the

swallowing issue for a while. At the very end, my dad could not swallow without

aspirating. A feeding tube does not eliminate the possibility of aspirating.

Here is a link to some of the info I found a while back. The first and 6th link

no longer work. I hope it may help you deal with the issue or search the Yahoo

LBDcaregivers site for swallowing issues.

http://health.groups.yahoo.com/group/LBDcaregivers/message/60898

We also did not elect to have a feeding tube, and I am at peace with that

decision. I wish you peace of mind as you go through this part of the journey.

Take care,

Daughter of Bill, died at 92

>

> The nurse told me today that they have asked for a swallow eval on Ray. He

> had two within the last month in the other NH but now we are getting very

> little food of any kind down him and they want to see if he is able to

> swallow at all. I really think it all stems from his post nasal drip and

> heavy amounts of mucous dropping into his throat and that is what probably

> caused him to have pneumonia this past week. They think it was from

> aspiration. Every time he tries to eat and drink, he coughs and chokes.

> Consequently, we are not able to get much down him.

>

> My question is a deep one: We have agreed to no feeding tubes or anything

> to prolong Ray's life when normal body functions cease to work. If this

> problem is caused from this mucous drip, am I hastening Ray's death if I

> refuse a feeding tube or something? Should I ask for an ENT to see him

> perhaps? Or is this just one more symptom of the 5th phase of LBD?

> Tomorrow's care meeting may be very stressful for me, I fear. Thanks folks,

> 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.

>

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

> want to live without.'

>

[Guest guest]

Leona,

I'm sorry, I don't have any advice, but I want you to know you're in my

thoughts. Wishing you strength and wisdom to make these difficult choices.

>

> The nurse told me today that they have asked for a swallow eval on Ray. He

> had two within the last month in the other NH but now we are getting very

> little food of any kind down him and they want to see if he is able to

> swallow at all. I really think it all stems from his post nasal drip and

> heavy amounts of mucous dropping into his throat and that is what probably

> caused him to have pneumonia this past week. They think it was from

> aspiration. Every time he tries to eat and drink, he coughs and chokes.

> Consequently, we are not able to get much down him.

>

> My question is a deep one: We have agreed to no feeding tubes or anything

> to prolong Ray's life when normal body functions cease to work. If this

> problem is caused from this mucous drip, am I hastening Ray's death if I

> refuse a feeding tube or something? Should I ask for an ENT to see him

> perhaps? Or is this just one more symptom of the 5th phase of LBD?

> Tomorrow's care meeting may be very stressful for me, I fear. Thanks folks,

> 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.

>

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

> want to live without.'

>

[Guest guest]

Leona, you have excellent, smart questions. Calling in an ENT sounds like the

right thing to do. Go with your intuition. I wish you peace as you make these

difficult decisions.

>

> The nurse told me today that they have asked for a swallow eval on Ray. He

> had two within the last month in the other NH but now we are getting very

> little food of any kind down him and they want to see if he is able to

> swallow at all. I really think it all stems from his post nasal drip and

> heavy amounts of mucous dropping into his throat and that is what probably

> caused him to have pneumonia this past week. They think it was from

> aspiration. Every time he tries to eat and drink, he coughs and chokes.

> Consequently, we are not able to get much down him.

>

> My question is a deep one: We have agreed to no feeding tubes or anything

> to prolong Ray's life when normal body functions cease to work. If this

> problem is caused from this mucous drip, am I hastening Ray's death if I

> refuse a feeding tube or something? Should I ask for an ENT to see him

> perhaps? Or is this just one more symptom of the 5th phase of LBD?

> Tomorrow's care meeting may be very stressful for me, I fear. Thanks folks,

> 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.

>

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

> want to live without.'

>

[Guest guest]

I second this a visit with an ENT might bring other relief maybe with some

antihistamine to help dry his secretions so he will beable to eat better,I'm

not sure if there is anything out there that should not be used with LBD and

since for now I am working with kids mybe something like Robinol would

work,it helps dry secreations but does not make the kids drowsy,you do have

to be careful it does not dry to much,which is a problem we often

have,usually we start the kids on 2-3 times a day for a month or so then

change it to a prn if they get to dry,just a thought,

Heidi

Re:Swallow evaluation requested

> Leona, you have excellent, smart questions. Calling in an ENT sounds like

> the right thing to do. Go with your intuition. I wish you peace as you

> make these difficult decisions.

>

>

>

>

>>

>> The nurse told me today that they have asked for a swallow eval on Ray.

>> He

>> had two within the last month in the other NH but now we are getting very

>> little food of any kind down him and they want to see if he is able to

>> swallow at all. I really think it all stems from his post nasal drip and

>> heavy amounts of mucous dropping into his throat and that is what

>> probably

>> caused him to have pneumonia this past week. They think it was from

>> aspiration. Every time he tries to eat and drink, he coughs and chokes.

>> Consequently, we are not able to get much down him.

>>

>> My question is a deep one: We have agreed to no feeding tubes or

>> anything

>> to prolong Ray's life when normal body functions cease to work. If this

>> problem is caused from this mucous drip, am I hastening Ray's death if I

>> refuse a feeding tube or something? Should I ask for an ENT to see him

>> perhaps? Or is this just one more symptom of the 5th phase of LBD?

>> Tomorrow's care meeting may be very stressful for me, I fear. Thanks

>> folks,

>> 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.

>>

>> 'Love is not finding someone to live with; it's finding someone you

>> don't

>> want to live without.'

>>

>

>

>

>

> ------------------------------------

>

> Welcome to LBDcaregivers.

>

>

[Guest guest]

My father has just started the pocketing of his food so we have to make sure he

has swallowed everything before he lies down so we have now started to have his

food ground. We have no idea what stage we are in, or even how long we have been

dealing with LBD, just that he is in his own little world with no clue what is

going on around him. Does Ray have a living will or depending where you live

advanced directives (same thing)? If so, does having a feeding tube go against

his wishes as it prolongs life? These are all such tough decisions. My tohughts

and prayers are with you.

Jayne in VT

> >

> > The nurse told me today that they have asked for a swallow eval on Ray. He

> > had two within the last month in the other NH but now we are getting very

> > little food of any kind down him and they want to see if he is able to

> > swallow at all. I really think it all stems from his post nasal drip and

> > heavy amounts of mucous dropping into his throat and that is what probably

> > caused him to have pneumonia this past week. They think it was from

> > aspiration. Every time he tries to eat and drink, he coughs and chokes.

> > Consequently, we are not able to get much down him.

> >

> > My question is a deep one: We have agreed to no feeding tubes or anything

> > to prolong Ray's life when normal body functions cease to work. If this

> > problem is caused from this mucous drip, am I hastening Ray's death if I

> > refuse a feeding tube or something? Should I ask for an ENT to see him

> > perhaps? Or is this just one more symptom of the 5th phase of LBD?

> > Tomorrow's care meeting may be very stressful for me, I fear. Thanks folks,

> > 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.

> >

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

> > want to live without.'

> >

>

[Guest guest]

Hi Leona,

As a follow up, I would also suggest discussing this and any other difficult

decisions that arise with Ray's doctor. It is much more comforting to have their

input....they can give you information to consider. Sometimes it is hard to

know what is treatable and what isn't. I often found myself feeling like I had

to make all of these difficult decisions...so the doctor's input was welcome.

With that, my dad fooled the doctors a few times. That's the thing with

LBD...it is so fluctuating and the rollercoaster has many bumps and turns. You

can get a lot of mixed information, so in the end you have to do what seems the

best for you and Ray.

All my best,

Daughter of Bill, died at 92