not eating, drinking much...

[Guest guest]

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