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[Guest guest]

It has been a rough month, especially two weeks. We have been in the " AIM "

home health program nearly two certification periods. They have been

" working on us " to sign up for hospice but we've wanted details and finally

decided ok we'll do it and do on the 11th. We both feel they have been

steering us into hospice (which they also provide). But we have needed

things like a hospital bed, chair cushions to ward off ulcer problems and so

on. These things have not been arranged yet though they keep telling us

they will do it. My feeling is they are waiting to let hospice do all this.

My husband has felt rushed and pressured and I feel confused by it all.

There are plenty of reasons they can justify coming out to take her vital

signs and check and see how she's doing yet they are telling us the contrary

and if we don't sign up with hospice they will just put us on phone

check-ins every week or so. But if we take hospice we will have lots of

help and so on. They have told us they would admit her into hospice on a

dementia diagnosis which would allow us to continue getting her treatment

for uti's and so on that require antibiotics.

So yesterday my mil woke with painful legs, back, lower abdomen and low

grade fever 98.8 that persisted through tylenol. So I called the home

health and since our RN was not in today I was patched through to the

nursing supervisor who proceeded to tell me 98.8 was not a low grade temp

and I should give her hydrodocone and see if that helps the pain. My

protests fell on an deaf ears and my concerns of another uti were dismissed.

I hung up pretty upset. Then called back and she was no where to be found

so I left a message on her voice mail that 98.8 IS a low grade fever for a

my mil who runs normally at 96.5 and that I was sure she was coming down

with a uti . I also added that we had not signed up for hospice yet and to

dismiss my concerns by telling me to give her the pain medicine is not

acceptable. We expect much better response with what we were told this

program would provide.

I did not hear back from this person. My mil was sicker and sicker through

the day. I put a call into her RN's voice mail so at least she'd get a

message when she returned. They my nurse came and got my infusion started

and I was tied up with that for 5 hours (I get home infusion therapy ever

Monday). My husband got home and the infusion finished and I went and

took my mil's temp - 101.6! So pack up everything and go to the ER with the

fire department coming out for another late night lift assist to get her

down the stairs. No one called that day to see how she was doing or even

if the pain medicine stopped the complaints.

My mil has another UTI. The scary thing is she keeps getting these and thus

they have had her taking septra ds every morning as a prophylactic for uti.

That means whatever is going on is resistant to the septra. Also she has

persistent thrush and we have been following all the swabbing and swallowing

instructions so now finally they are going to add fluconazole liquid for it.

I told the RN today If possible, ideally I'd want a standing order for UA

with straight cath and culture and sensitivity run. And some antibiotics on

hand to give her after that sample is obtained so we have something on

board. And if those don't work fast then we go to the ER and they decide

what to treat with from there. I think this is a good plan for a quick and

effective response that could keep her out of the hospital - if it's quick.

So they agreed to try and put this together. Will this carry over if we

decide to go with hospice? No straight answer.

We are hearing from the doctors and er nurses (who we know on a first name

basis now) that she could be gone just like that with a nasty uti that goes

super infection. Like in a matter of hours. That was shocking. So at this

point we don't know what to plan for - LBD or UTI. And I'm perplexed by

the response from so many when we say yes we want to treat infections as

aggressively as needed for now. She's still lucid, still able to walk and

is happy with her quality of life - and she wants to try to beat infections

if possible. So I got to do what I got to do. I'm going to take her back

to the urologist who determined she was not retaining urine (and thus did

not need a catheter) and see if he can offer any advice or help with all

this. It's confusing but it gets even more so with people telling me I

have to let go, etc etc. What happened to " do the best you can and God

will do the rest? "

Anyway it's been a rough week. I had a kidney stone and pulled a muscle in

my back due to lousy broken hospital bed Apria dropped off on her 6 years

ago. Hope to get this solved in the next day. I don't see why not.

Dorothy