Fw: RE: fast decline

[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