Why we aren't in hospice yet

[Guest guest]

We were going to transition into hospice last month and then my mil got the

major signs of another UTI (fever, pain, agitation, nausea etc.) and I

called the Advanced Illness Management program and was given to the

supervising RN as my mil's RN was on a day off. The supervising RN told me

98.8 is not a low grade fever, that it could be anything and I should give

her pain medicine. That was it. I had been told that they were there to

help us keep my mil out of the ER and that is why medicare liked their

program. But here I was most certainly heading back to the ER. After thing

about this I called back - she didn't pick up so it went to her voice mail.

I told her we were not with hospice yet and though she thinks she knows

better, 98.8 is a low grade temp with my mil and put that together with

pain, nausea, vomiting, and her altered cognitive state it screams UTI to me

and I have never heard of treating a uti with vicodine!

The RN did not call back, she did not call even later in the day to see how

my mil was doing. There was no follow up. I was on the sofa that afternoon

getting my home infusion, which I get every two weeks for my own health

issues. My RN was very upset how sick my mil was and how that was affecting

me. When my infusion was done I called the fire department for a " lift

assist " to get my mil down the stairs and into the car and took her to the

ER. She had a very bad UTI and they gave her an injection of Rocephin and

Rx for oral antibiotics. She started looking better after an hour so we

packed up and came back home.

The next morning her nurse came and I chewed her out when she started

defending the actions and inactions of her supervisor. I told her this

completely shook our trust in their organization. We had relied on them to

be responsive and caring and instead we got the brush off and no follow up,

nothing. The program is supposed to keep her out of the ER and has done

nothing of the sort because the staff is poorly educated. I went on and on.

I would not accept any excuse because there is none. My husband was very

angry. This RN kept saying things like, " Well I hate to play devil's

advocate but chances are she will have a uti that will not be treatable. "

and I'd have to interrupt and tell her we expect her and her company to help

us do all we can to keep my mil healthy and treat infections as well as can

be done - NOT tell us why they can't help or excuse lousy care. She tried

to do this devils advocate thing 4 times and I thought my husband was going

to deck her he was so angry. She didn't even seem to notice how upset he

was.

So the last month my mil has deteriorated more and more. She has days she

can hardly eat or drink anything. She is barely able to walk with a

tremendous amount of effort of whoever is doing caregiving. She doesn't

know if she's sitting or standing or lying down most of the time. She calls

and yells all night and begs to sleep during the day and as soon as she is

lying down yells for someone to please get her up. It's terrible. I know

she will be bed bound soon. I was back to no sleep the last three nights -

that really took a toll on me the months I was doing it before - so I very

reluctantly used the medicine they gave us to treat nighttime agitation -

liquid ativan. The one thing about is I can give her .1 ml with a tiny

insulin syringe and just that little tiny amount works. It takes awhile but

it works. She doesn't know what she's doing but at least we will all get a

little sleep tonight.

We decided that we could probably do what hospice would do but if she has a

night with pain that the pain medicine can't handle that we will get hospice

in right away. I don't like being in this position but I can't push my

husband on it and we can manage so far - I can't see that hospice would help

us at all at this point. The mistrust comes from the fact that we want to

treat infections as they come up if possible. It's the idea of doing the

best we can and letting God do the rest. That is the only way both I and my

husband can live with ourselves and our decisions on caring for my mil. It

seems to be a foreign idea to some of these AIM program RN's and that makes

a lot of distrust for their hospice service.

Also, I was pretty excited about the AIM home health care program from what

they told us it does. But after being in it for a few months it has not

made much difference positively and I can say I'm really not impressed and

they seem to want to serve as a channel to get people signed up for their

hospice services.

Dorothy