fast decline

[Guest guest]

We have been hammered with reality this last week but especially last few

days. My mil is having more and more trouble breathing correctly and no one

can figure it out - or even worse - advise us on how to manage it.

I wrote earlier about the panting episodes she goes into when groaning and

when doing a nebulizer. Well now that painting is starting up a lot more

and continuing. The last 5 days I think she panted through at least half of

it. Panting = short ineffective breaths. Last night we went to the ER and

they said there is nothing wrong with her except dyspnea (shortness of

breath). She has an incredible amount of wheezing accompanying this also.

She is wheezing so badly on any exertion I don't know how she manages to

struggle for breath. Her doctor rx'd portable oxygen concentrator so she

could continue her walks and activities but they are slow to provide one

(2+ months now). I have been using the big concentrator and trying to use

a mask or set up some deal where it blows oxygen hear her face so it might

help some (suggestion of an RN at the er) but not seen any improvement. Her

o2 sats are running 92-94 without the addition of it also - not too bad for

the symptoms I'm seeing and I'm frankly really stumped.

My RN who does my in home infusions every week is also concerned and helped

my husband carry her out to the car last night to go to the ER. He called

today to see how she is. His suggestion to keep her comfortable and keep

trying to figure it out, find good positions for her to be resting in, etc.

He also suggested finding information about the last stages of life/dying

process and thought perhaps I might find some reference to the shortness of

breath/panting there as well

Mentally she is barely with us. I think she must be in another world part

way at least. I keep asking if she is in pain and she isn't but sometimes

she is so I try to make things feel better. I'm keeping tylenol up round

the clock now and that does seem to help some. The trouble with her stomach

and haital hernia is rough but she still wants to eat very well (have to cut

portions back a lot due to the hernia trouble). The other thing is she

cannot void completely. When she can sit on the commode I help her touch

her toes carefully and that helps the voiding process but otherwise it just

doesn't work.

I feel like she has declined very rapidly. Her chest x-ray is clear and

there is no sign of uti as of yesterday so not sure if there's any kind of

infection causing this. I had thought it would be a slower decline and I

would have time to plan a little and adjust to the next stage but at this

point I am not seeing it. I have asked her doctor twice now about hospice

and he maintains she is not at that point yet.

This morning she was panting so much she got ill, threw up, gurgled some

back in her lungs and is now really short of breath and coughing some of it

up here and there. I have had her in her bed all day to rest and hopefully

regain some strength - she was not strong enough to stand this morning so

everything has been done in bed (sponge bath, toileting, etc.)

Also I need to find a much better hospital bed - the one Apria gave her

almost 4 years ago is standard metal clunker with bent rails and we had to

take the wheels off so she could get in and out of it (she's a little bitty

lady and it was too high for her). Without the wheels on it we cannot crank

it up high so we can care for her without killing our backs. I have spent

days looking online for hospital beds that we could all live with but have

no idea how to access them.

It is feeling daunting and I honestly don't think we are getting enough help

and information out here, but have no alternatives. Is panting/shortness

of breath part of the dying process? Where can I learn more, I really need

to figure these things out.

Thank you

Dorothy

Daughter in law and caregiver to

93 yrs old

DLB with parkinsonism 3.8 years

Mild Dementia 5 years

Peripheral neuropathy 10 years

I

[Guest guest]

Hi Dorothy

My heart breaks for you and your MIL. What an awful time. Does she also have

the panting episode while she is asleep?

As for the hospital bed, sometimes people give those away on craigslist. I was

recently on the " free " category of craigslist,com and saw one in my area that

someone was giving away. That may be some place to check. You can even post

that you are looking for one. Freecycle is another place you could check into.

Please keep us posted. I wish I could be of some help.

Kathy

fast decline

We have been hammered with reality this last week but especially last few

days. My mil is having more and more trouble breathing correctly and no one

can figure it out - or even worse - advise us on how to manage it.

I wrote earlier about the panting episodes she goes into when groaning and

when doing a nebulizer. Well now that painting is starting up a lot more

and continuing. The last 5 days I think she panted through at least half of

it. Panting = short ineffective breaths. Last night we went to the ER and

they said there is nothing wrong with her except dyspnea (shortness of

breath). She has an incredible amount of wheezing accompanying this also.

She is wheezing so badly on any exertion I don't know how she manages to

struggle for breath. Her doctor rx'd portable oxygen concentrator so she

could continue her walks and activities but they are slow to provide one

(2+ months now). I have been using the big concentrator and trying to use

a mask or set up some deal where it blows oxygen hear her face so it might

help some (suggestion of an RN at the er) but not seen any improvement. Her

o2 sats are running 92-94 without the addition of it also - not too bad for

the symptoms I'm seeing and I'm frankly really stumped.

My RN who does my in home infusions every week is also concerned and helped

my husband carry her out to the car last night to go to the ER. He called

today to see how she is. His suggestion to keep her comfortable and keep

trying to figure it out, find good positions for her to be resting in, etc.

He also suggested finding information about the last stages of life/dying

process and thought perhaps I might find some reference to the shortness of

breath/panting there as well

Mentally she is barely with us. I think she must be in another world part

way at least. I keep asking if she is in pain and she isn't but sometimes

she is so I try to make things feel better. I'm keeping tylenol up round

the clock now and that does seem to help some. The trouble with her stomach

and haital hernia is rough but she still wants to eat very well (have to cut

portions back a lot due to the hernia trouble). The other thing is she

cannot void completely. When she can sit on the commode I help her touch

her toes carefully and that helps the voiding process but otherwise it just

doesn't work.

I feel like she has declined very rapidly. Her chest x-ray is clear and

there is no sign of uti as of yesterday so not sure if there's any kind of

infection causing this. I had thought it would be a slower decline and I

would have time to plan a little and adjust to the next stage but at this

point I am not seeing it. I have asked her doctor twice now about hospice

and he maintains she is not at that point yet.

This morning she was panting so much she got ill, threw up, gurgled some

back in her lungs and is now really short of breath and coughing some of it

up here and there. I have had her in her bed all day to rest and hopefully

regain some strength - she was not strong enough to stand this morning so

everything has been done in bed (sponge bath, toileting, etc.)

Also I need to find a much better hospital bed - the one Apria gave her

almost 4 years ago is standard metal clunker with bent rails and we had to

take the wheels off so she could get in and out of it (she's a little bitty

lady and it was too high for her). Without the wheels on it we cannot crank

it up high so we can care for her without killing our backs. I have spent

days looking online for hospital beds that we could all live with but have

no idea how to access them.

It is feeling daunting and I honestly don't think we are getting enough help

and information out here, but have no alternatives. Is panting/shortness

of breath part of the dying process? Where can I learn more, I really need

to figure these things out.

Thank you

Dorothy

Daughter in law and caregiver to

93 yrs old

DLB with parkinsonism 3.8 years

Mild Dementia 5 years

Peripheral neuropathy 10 years

I

[Guest guest]

Thank you Kathy. I am checking craigslist regularly and also freecycle and have

put request there as well. I’m thinking maybe I can put this bed on some kind

of blocks, that is if it turns out she cannot get up again, we will have to wait

and see for that.

She is having these panting episodes even when asleep – they wake her from

sleep. I am combing the web for information about dementia and shortness of

breath and so far the most helpful thing explained shortness of breath and pain

go hand in hand when a person with advanced dementia is in process of dying.

Yet I am told she is not ready for hospice. That article says morphine eases

these symptoms. I think if I could get a hospice referral I might get better

answers about these things – understanding that doctors are usually in the

process of keeping folks alive and well, not helping them as they cross over. I

think that should be a medical specialty in itself.

Thanks for your kind thoughts, they mean a great deal.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Kathy

Sent: Tuesday, November 30, 2010 3:59 PM

To: LBDcaregivers

Subject: Re: fast decline

Hi Dorothy

My heart breaks for you and your MIL. What an awful time. Does she also have the

panting episode while she is asleep?

As for the hospital bed, sometimes people give those away on craigslist. I was

recently on the " free " category of craigslist,com and saw one in my area that

someone was giving away. That may be some place to check. You can even post that

you are looking for one. Freecycle is another place you could check into.

Please keep us posted. I wish I could be of some help.

Kathy

fast decline

We have been hammered with reality this last week but especially last few

days. My mil is having more and more trouble breathing correctly and no one

can figure it out - or even worse - advise us on how to manage it.

I wrote earlier about the panting episodes she goes into when groaning and

when doing a nebulizer. Well now that painting is starting up a lot more

and continuing. The last 5 days I think she panted through at least half of

it. Panting = short ineffective breaths. Last night we went to the ER and

they said there is nothing wrong with her except dyspnea (shortness of

breath). She has an incredible amount of wheezing accompanying this also.

She is wheezing so badly on any exertion I don't know how she manages to

struggle for breath. Her doctor rx'd portable oxygen concentrator so she

could continue her walks and activities but they are slow to provide one

(2+ months now). I have been using the big concentrator and trying to use

a mask or set up some deal where it blows oxygen hear her face so it might

help some (suggestion of an RN at the er) but not seen any improvement. Her

o2 sats are running 92-94 without the addition of it also - not too bad for

the symptoms I'm seeing and I'm frankly really stumped.

My RN who does my in home infusions every week is also concerned and helped

my husband carry her out to the car last night to go to the ER. He called

today to see how she is. His suggestion to keep her comfortable and keep

trying to figure it out, find good positions for her to be resting in, etc.

He also suggested finding information about the last stages of life/dying

process and thought perhaps I might find some reference to the shortness of

breath/panting there as well

Mentally she is barely with us. I think she must be in another world part

way at least. I keep asking if she is in pain and she isn't but sometimes

she is so I try to make things feel better. I'm keeping tylenol up round

the clock now and that does seem to help some. The trouble with her stomach

and haital hernia is rough but she still wants to eat very well (have to cut

portions back a lot due to the hernia trouble). The other thing is she

cannot void completely. When she can sit on the commode I help her touch

her toes carefully and that helps the voiding process but otherwise it just

doesn't work.

I feel like she has declined very rapidly. Her chest x-ray is clear and

there is no sign of uti as of yesterday so not sure if there's any kind of

infection causing this. I had thought it would be a slower decline and I

would have time to plan a little and adjust to the next stage but at this

point I am not seeing it. I have asked her doctor twice now about hospice

and he maintains she is not at that point yet.

This morning she was panting so much she got ill, threw up, gurgled some

back in her lungs and is now really short of breath and coughing some of it

up here and there. I have had her in her bed all day to rest and hopefully

regain some strength - she was not strong enough to stand this morning so

everything has been done in bed (sponge bath, toileting, etc.)

Also I need to find a much better hospital bed - the one Apria gave her

almost 4 years ago is standard metal clunker with bent rails and we had to

take the wheels off so she could get in and out of it (she's a little bitty

lady and it was too high for her). Without the wheels on it we cannot crank

it up high so we can care for her without killing our backs. I have spent

days looking online for hospital beds that we could all live with but have

no idea how to access them.

It is feeling daunting and I honestly don't think we are getting enough help

and information out here, but have no alternatives. Is panting/shortness

of breath part of the dying process? Where can I learn more, I really need

to figure these things out.

Thank you

Dorothy

Daughter in law and caregiver to

93 yrs old

DLB with parkinsonism 3.8 years

Mild Dementia 5 years

Peripheral neuropathy 10 years

I

[Guest guest]

Dorothy

Just thinking about your dear MIL possibly being in pain is so sad. Would her

doctor be willing to give her a trial of something stronger than tylenol to see

if you can't make her comfortable?

When we cared for my husband's grandmother, her Medicare paid for a new hospital

bed. It came on lease and then after so many months, it was hers. Did you see

if she could get one from her insurance, even it it is just a loaner?

Hugs

Kathy

[Guest guest]

Dyspnea can be part of the dying process.

I suggest you speak with a local hospice agency about getting your MIL enrolled.

They may want to use narcotics to treat the dyspnea.

>

> We have been hammered with reality this last week but especially last few

> days. My mil is having more and more trouble breathing correctly and no one

> can figure it out - or even worse - advise us on how to manage it.

>

>

>

> I wrote earlier about the panting episodes she goes into when groaning and

> when doing a nebulizer. Well now that painting is starting up a lot more

> and continuing. The last 5 days I think she panted through at least half of

> it. Panting = short ineffective breaths. Last night we went to the ER and

> they said there is nothing wrong with her except dyspnea (shortness of

> breath). She has an incredible amount of wheezing accompanying this also.

> She is wheezing so badly on any exertion I don't know how she manages to

> struggle for breath. Her doctor rx'd portable oxygen concentrator so she

> could continue her walks and activities but they are slow to provide one

> (2+ months now). I have been using the big concentrator and trying to use

> a mask or set up some deal where it blows oxygen hear her face so it might

> help some (suggestion of an RN at the er) but not seen any improvement. Her

> o2 sats are running 92-94 without the addition of it also - not too bad for

> the symptoms I'm seeing and I'm frankly really stumped.

>

>

>

> My RN who does my in home infusions every week is also concerned and helped

> my husband carry her out to the car last night to go to the ER. He called

> today to see how she is. His suggestion to keep her comfortable and keep

> trying to figure it out, find good positions for her to be resting in, etc.

> He also suggested finding information about the last stages of life/dying

> process and thought perhaps I might find some reference to the shortness of

> breath/panting there as well

>

>

>

> Mentally she is barely with us. I think she must be in another world part

> way at least. I keep asking if she is in pain and she isn't but sometimes

> she is so I try to make things feel better. I'm keeping tylenol up round

> the clock now and that does seem to help some. The trouble with her stomach

> and haital hernia is rough but she still wants to eat very well (have to cut

> portions back a lot due to the hernia trouble). The other thing is she

> cannot void completely. When she can sit on the commode I help her touch

> her toes carefully and that helps the voiding process but otherwise it just

> doesn't work.

>

>

>

> I feel like she has declined very rapidly. Her chest x-ray is clear and

> there is no sign of uti as of yesterday so not sure if there's any kind of

> infection causing this. I had thought it would be a slower decline and I

> would have time to plan a little and adjust to the next stage but at this

> point I am not seeing it. I have asked her doctor twice now about hospice

> and he maintains she is not at that point yet.

>

>

>

> This morning she was panting so much she got ill, threw up, gurgled some

> back in her lungs and is now really short of breath and coughing some of it

> up here and there. I have had her in her bed all day to rest and hopefully

> regain some strength - she was not strong enough to stand this morning so

> everything has been done in bed (sponge bath, toileting, etc.)

>

>

>

> Also I need to find a much better hospital bed - the one Apria gave her

> almost 4 years ago is standard metal clunker with bent rails and we had to

> take the wheels off so she could get in and out of it (she's a little bitty

> lady and it was too high for her). Without the wheels on it we cannot crank

> it up high so we can care for her without killing our backs. I have spent

> days looking online for hospital beds that we could all live with but have

> no idea how to access them.

>

>

>

> It is feeling daunting and I honestly don't think we are getting enough help

> and information out here, but have no alternatives. Is panting/shortness

> of breath part of the dying process? Where can I learn more, I really need

> to figure these things out.

>

> Thank you

>

>

>

> Dorothy

>

> Daughter in law and caregiver to

>

> 93 yrs old

>

> DLB with parkinsonism 3.8 years

>

> Mild Dementia 5 years

>

> Peripheral neuropathy 10 years

>

>

>

> I

>

>

>

>

[Guest guest]

After a long day my mil is now spiking a temp with a rattling cough and

rumbly chest. Same doctor is on at the ER so going to try and make it to

9am and go to urgent care. At this point I have no doubt there is some kind

of chest/lung infection going on. Have no idea if that would account for

the decline but as her neurologist advised, track down and treat any

infection first and then see.

I have some real misgivings about this ER doc as she is the same one that

dosed my mil up on ativan when she had bronchitis (turned out to be whooping

cough) last May, despite her list of allergies and health issues

specifically listing ativan as bad for her etc. in red ink. She was very

defensive about not noticing it in her allergies. She told me then we

should put her in a nursing home and not waste our time but my feeling was

she was more concerned about it wasting her time. Anyway I'll update as I

learn what's going on. Thank you all for suggestions and words of

encouragement, very much appreciated!

Dorothy

[Guest guest]

I am thinking of you and praying for your MIL. It sounds like a real serious

situation. Is there another hospital you could take her to? Sounds like you

might need fresh eyes and ears from another Dr. She may have pneumonia and need

some help right away. Hugs for you!!!! Sharon Stalnaker

Sent from my Verizon Wireless BlackBerry

RE: fast decline

After a long day my mil is now spiking a temp with a rattling cough and

rumbly chest. Same doctor is on at the ER so going to try and make it to

9am and go to urgent care. At this point I have no doubt there is some kind

of chest/lung infection going on. Have no idea if that would account for

the decline but as her neurologist advised, track down and treat any

infection first and then see.

I have some real misgivings about this ER doc as she is the same one that

dosed my mil up on ativan when she had bronchitis (turned out to be whooping

cough) last May, despite her list of allergies and health issues

specifically listing ativan as bad for her etc. in red ink. She was very

defensive about not noticing it in her allergies. She told me then we

should put her in a nursing home and not waste our time but my feeling was

she was more concerned about it wasting her time. Anyway I'll update as I

learn what's going on. Thank you all for suggestions and words of

encouragement, very much appreciated!

Dorothy

[Guest guest]

Dear Dorothy,

It sounds like something is definitely going on in your mil's chest. Will send

good thoughts your way.

With hugs and prayers,

Helene in NY

>

> After a long day my mil is now spiking a temp with a rattling cough and

> rumbly chest. Same doctor is on at the ER so going to try and make it to

> 9am and go to urgent care. At this point I have no doubt there is some kind

> of chest/lung infection going on. Have no idea if that would account for

> the decline but as her neurologist advised, track down and treat any

> infection first and then see.

>

>

>

> I have some real misgivings about this ER doc as she is the same one that

> dosed my mil up on ativan when she had bronchitis (turned out to be whooping

> cough) last May, despite her list of allergies and health issues

> specifically listing ativan as bad for her etc. in red ink. She was very

> defensive about not noticing it in her allergies. She told me then we

> should put her in a nursing home and not waste our time but my feeling was

> she was more concerned about it wasting her time. Anyway I'll update as I

> learn what's going on. Thank you all for suggestions and words of

> encouragement, very much appreciated!

>

>

>

> Dorothy

>

>

>

>

[Guest guest]

The ER doc said you shouldn't waste your time?! How awful for you to have to

hear that. Since when is caring for your loved one a waste of time? It makes me

livid to hear that any medical professional would speak and think that way.

Sounds like she needs an attitude adjustment.

Prayers for your mil and for you and your family.

Katy

[Guest guest]

Trying this again.

Donna R

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

from LBD in 2002.

fast decline

We have been hammered with reality this last week but especially last few

days. My mil is having more and more trouble breathing correctly and no one

can figure it out - or even worse - advise us on how to manage it.

I wrote earlier about the panting episodes she goes into when groaning and

when doing a nebulizer. Well now that painting is starting up a lot more

and continuing. The last 5 days I think she panted through at least half of

it. Panting = short ineffective breaths. Last night we went to the ER and

they said there is nothing wrong with her except dyspnea (shortness of

breath). She has an incredible amount of wheezing accompanying this also.

She is wheezing so badly on any exertion I don't know how she manages to

struggle for breath. Her doctor rx'd portable oxygen concentrator so she

could continue her walks and activities but they are slow to provide one

(2+ months now). I have been using the big concentrator and trying to use

a mask or set up some deal where it blows oxygen hear her face so it might

help some (suggestion of an RN at the er) but not seen any improvement. Her

o2 sats are running 92-94 without the addition of it also - not too bad for

the symptoms I'm seeing and I'm frankly really stumped.

My RN who does my in home infusions every week is also concerned and helped

my husband carry her out to the car last night to go to the ER. He called

today to see how she is. His suggestion to keep her comfortable and keep

trying to figure it out, find good positions for her to be resting in, etc.

He also suggested finding information about the last stages of life/dying

process and thought perhaps I might find some reference to the shortness of

breath/panting there as well

Mentally she is barely with us. I think she must be in another world part

way at least. I keep asking if she is in pain and she isn't but sometimes

she is so I try to make things feel better. I'm keeping tylenol up round

the clock now and that does seem to help some. The trouble with her stomach

and haital hernia is rough but she still wants to eat very well (have to cut

portions back a lot due to the hernia trouble). The other thing is she

cannot void completely. When she can sit on the commode I help her touch

her toes carefully and that helps the voiding process but otherwise it just

doesn't work.

I feel like she has declined very rapidly. Her chest x-ray is clear and

there is no sign of uti as of yesterday so not sure if there's any kind of

infection causing this. I had thought it would be a slower decline and I

would have time to plan a little and adjust to the next stage but at this

point I am not seeing it. I have asked her doctor twice now about hospice

and he maintains she is not at that point yet.

This morning she was panting so much she got ill, threw up, gurgled some

back in her lungs and is now really short of breath and coughing some of it

up here and there. I have had her in her bed all day to rest and hopefully

regain some strength - she was not strong enough to stand this morning so

everything has been done in bed (sponge bath, toileting, etc.)

Also I need to find a much better hospital bed - the one Apria gave her

almost 4 years ago is standard metal clunker with bent rails and we had to

take the wheels off so she could get in and out of it (she's a little bitty

lady and it was too high for her). Without the wheels on it we cannot crank

it up high so we can care for her without killing our backs. I have spent

days looking online for hospital beds that we could all live with but have

no idea how to access them.

It is feeling daunting and I honestly don't think we are getting enough help

and information out here, but have no alternatives. Is panting/shortness

of breath part of the dying process? Where can I learn more, I really need

to figure these things out.

Thank you

Dorothy

Daughter in law and caregiver to

93 yrs old

DLB with parkinsonism 3.8 years

Mild Dementia 5 years

Peripheral neuropathy 10 years

I