Getting on the same page

fwiw, the hospice nurse's recommendations are reasonable.

she must have gotten the impression that grandma isn't sleeping well at noc?

and prn roxanol is wonderful for end-stage chf.

but you said that grandma gets sob only when ambulating, which doesn't really sound like end-stage?

what would you expect the hospice nurse to do for your grandma, if you don't want the meds?

leslie:)

I can appreciate your concern and desire for your grandmother not to be bombarded with medications. However, I do agree with Leslie. It sounds like this nurse is trying to make grandma as comfortable as possible. I work on a unit where we use Ativan and Seroquel for sleep as well as anxiety and agitation. We also monitor sleep very closely and if someone is talking a lot in their sleep the quality of their sleep is most likely compromised. So the least you can do is try it and see if it is helpful and go from there. Blessings and peace to you and your grandmother.

my philosophy is better to have it and not need it, than to need it and not have it. Roxinol decreases the workload of the heart and decreases oxygen demand. We use 20mg/ml and usually order 5-20mg q1h prn dyspnea or pain. And you can always give more, you can never take less-so i always start folks on the 5mg end. If she needs the seroquel to help her sleep, it is there and available, but if she doesn't need it, don't give it. CHF makes folks feel like they are smothering, so ativan is good (personally, i like xanax better because it also gives a feeling of uphoria), so she doesn't feel smothered.

Even if your mother isn't using the roxinol, we try as hospice nurses, to get family used to the idea. the name "morphine" usually scares folks. (i had one family emphatically refuse to use roxinol because they had a family member that was passing in the hospital setting, and they were getting it iv and they didn't like how it had an instant effect the iv route--)

Bless you and your mother. It is a difficult task to care for a loved one at the end stage of any disease process.

linda

Bottom line is that hospice nurses offer tools to the family which are known (evidence based) to alleviate or improve symptoms that are reported or observed. It is entirely up to your mother as pcg and your grandmother as to whether or not they are used. Most of us are pretty "pro comfort", so I suppose on some level that makes us "gung ho".

Thanks for the imput! I am very on board with the hospice philosophy and would love to consider it as a career when I have more time to actually work. (just doing PT/ prn and SAHM)

My issues were with the nurse. First off, after she can't even remember her name. SRLY even after repeated reminders. Second, she really doesn't even look at the big picture and doesn't include her primary caregiver in anything. Yes...we nurse the patient, but what about asking the person that is with her 24/7 what is going on? My mother is a nurse (hasn't told the visiting nurse that nor does she play the nurse card) and isn't afraid of giving meds (she worked onocology and used tons of morphine).

I guess our beef is really with the nurse and not the drugs. I'm all for drugs, but I didn't think hospice nursing was just about drugs, KWIM?

Update on using the meds...mom did give her a dose of the seroquel and it zonked her for 2 days now. Now she is incontinant, not eating and just sleeping all day. Where as she was fully cont of bowel and bladder, awake at night and just mumbling or talking, eating more than her fair share at her age and napping at times during the day.

Guess I was just venting.

hhhmmm...

It is very reasonable, if there is not a good professional connection between your mom and the nurse, to request a change in your grandmothers case manager. Further, if the POC seems to be directed from the medical view point without regard for the pcg/pt perspective, it might be helpful for your mom to attend an interdisciplinary team meeting. This will allow her to speak directly with the nurse and the doctor and the social worker, etc as your grandmother's plan is reviewed for effectiveness. If the hospice agency is not helpful in your family developing a comfort level with the care they provide...request a transfer to another agency.

Bottom line, this is about your grandmother and your mother as her primary care giver. Hospices are like baseball teams...we all play the same game by the same rules but the teams are distinctly different. While some differences can be simply superficial there can also be very important differences in management, and medical direction, and staff composition which affect patient satisfaction and outcomes. Teams that get the important stuff right are winners...you deserve a winning team.

Good luck to you.