[AtlantaRN]

New hospice patient discharged saturday from hospital, terminal ca with mets; can't make it to her md appointment today. Tried to set up a visit 9:30 this morning; hubby said "no, she has a md appt at 1:30, so we won't be back til after 5; give us a call then". Just got a call from MSW saying she spoke with hubby who said wife is more weak and won't make it to md appt today; so I called back; he said wife "just had a nausea pill and is lying down." he also said that kids and grandkids were "over all weekend, too loud and rambunctious for us all weekend." verbalized it was really too much on the patient.

Says give her 2 hours, call back at 3:30, if she is awake you can "make your visit then." Then he said "I thought they were going to give her 2 more rounds of chemo, but I guess they cant because she didn't go to her appointment today. Now when she was admitted on Saturday, we went all through the supportive care, no more treatment for cancer, just supportive/symptom control. Both she and her husband verbalized an understanding of this, at that time. I reiterated that Hospice is for "symptom control, to help her stay home as she wishes."

Another thing, we have this 8X11.5" sign that we place on the front of the hospice packet, and the front of the refrigerator for easy view, to call the HOSPICE FIRST for any problems. I reminded him that any nausea medication, etc would have been covered under the hospice benefit...

Anywhoo, now I'm wondering how much information he has retained. I know he is really worried about her, but I don't think he gets the purpose of hospice at this point. I went over everything, and gave him copies of everything.

We'll go more over everything today, should he let me come and see her...

What else can I do for them?

thanks for your input.

linda

[zoeboboey]

Originally Posted by AtlantaRN

We'll go more over everything today, should he let me come and see her...

What else can I do for them?

thanks for your input.

linda

Sounds tough, how long has she been ill? Maybe it hasn't all sunk in yet and they are in and out of denial - especially if all the kids were there and they didn't want to face the fact that she wouldn't be there to see them much longer.

{{{{{{{{{Linda}}}}}}}}]

[AtlantaRN]

just got back, saw patient weak and sedated, but no longer nauseated

Spent 2.5 hours there with patient mostly sleeping off and on, spoke mostly with husband. Talked about supportive care, "comfort not CURE", he understood that. Went over purpose of hospice to help "her to stay home, and to help him stay home with her." he verbalized an understanding to call office number first for nausea, pain, any symptom control problems; as she is a full code; instructed to call 911 for heart stopping, stop breathing, etc "emergency = 911" "symptoms = office number" Wrote out the emergency plan... He said that he doesn't know how to help her, explained that it's my JOB to help him to help her. Educated that 24h/day 7days/week WE are here for THEM. I think he now gets it.....

She looked weak, but vitals were good, so that is encouraging for him.

linda

[AtlantaRN]

btw: she's been ill since 1/06

[zoeboboey]

Originally Posted by AtlantaRN

btw: she's been ill since 1/06

Hi, glad he is getting a better picture, altho I wouldn't be surprised if he comes in and out of accepting it. May God be merciful that she doesn't suffer for a long time, and that he can let her go peacefully...

[AtlantaRN]

"he comes in and out of accepting it"

yep, today he was talking about chemo again. Again I educated that in her current state, soooo debilitated, gut slowing down, more lethargy; there is absolutely no way that she could safely tolerate chemo. AND the doctor is NOT planning anymore chemo...this was also re-educated.

He just wants her well. daughters want her comfortable.

Today we talked about "safety". as patient took another fall yesterday, bruise across head and bridge of nose. One daughter has taken a leave of absence and has moved in to help. Hubby is debilitated as well with back problems.

I feel better now that one daughter is there full time.

linda

[zoeboboey]

Originally Posted by AtlantaRN

"he comes in and out of accepting it"

yep, today he was talking about chemo again. Again I educated that in her current state, soooo debilitated, gut slowing down, more lethargy; there is absolutely no way that she could safely tolerate chemo. AND the doctor is NOT planning anymore chemo...this was also re-educated.

He just wants her well. daughters want her comfortable.

Today we talked about "safety". as patient took another fall yesterday, bruise across head and bridge of nose. One daughter has taken a leave of absence and has moved in to help. Hubby is debilitated as well with back problems.

I feel better now that one daughter is there full time.

linda

Man, not a great situation at all... is he also confused at all, dementia or anything? I assumed denial but perhaps there is more. Yes it is awesome that the daughter is there, for a number of reasons!

Thanks for keeping us up to date!

[AtlantaRN]

found yesterday, daughters are still staying at their OWN HOMES!!!!! They will call me the day before nursing visit to say "call us before you go there so WE can be there." Now, EVERY VISIT, i go through how 2 daughters and husband have to all take responsibility.......I mean WHY did daughter take a LOA, she has no husband, no children, shoot not even a pet.....therefore WHY can't she be there.....

Sometimes I just want to shake the daughters....THEY want me to tell the DAD what a BAD JOB he is doing.....when THEY can take an active role too??? Whacked.

[aimeee]

Maybe husband doesn't want them to stay there? Maybe he is pushing away their help? Next time they start complaining about him you might try something like "He is really struggling with this, isn't he? Shall we brainstorm together about some ways you and (sister) might help him in order to make this care manageable together?"

[zoeboboey]

Originally Posted by AtlantaRN

found yesterday, daughters are still staying at their OWN HOMES!!!!! They will call me the day before nursing visit to say "call us before you go there so WE can be there." Now, EVERY VISIT, i go through how 2 daughters and husband have to all take responsibility.......I mean WHY did daughter take a LOA, she has no husband, no children, shoot not even a pet.....therefore WHY can't she be there.....

Sometimes I just want to shake the daughters....THEY want me to tell the DAD what a BAD JOB he is doing.....when THEY can take an active role too??? Whacked.

Did they all think you/hospice would be there 24/7?

Can't beat family dynamics is all I can say. Is it appropriate to say that she needs to be in a facility if the daughters can't take a major role in her care? Cause with her falling and his denial, she is NOT getting comfort care or a peaceful death IMHO.