"I just want a life"

[SteveinMN]

Wow, freshstart, what a situation!

DW has a friend in hospice now with a similar prognosis. After three weeks she's already exceeded the time they thought she'd be able to be off her cancer-treatment meds. Similar issues with juggling which drugs are allowed and which are not as well as decisions made by the patient and family (do they really need to ride herd on her blood glucose levels now?). What I know of her situation, though, is that she's no longer on the expensive drugs.

Not to just do the "guy thing" but I take it you have the legal power to represent your mother in this matter? There should be some sort of appeal mechanism for decisions like those (if there really isn't, there ought to be). For what it's worth, I can understand your mom's reservation in taking on the hospice, but what I've seen with hospice in other situations is that -- at least at a basic level -- the care level is the people who show up, not the panel sitting in their offices. There's only so much they can do to mess up her care.

I wish you the best. Not only is there the matter of your mom's last days, there's this battle to fight as well....

[danna]

Freshstart...just sending you my good thoughts...been were you are too many times, and it is never an easy road.
Please try to look after yourself too.

[TooSweetForMe]

neither yet

I'm so sorry to hear that - more prayers going up. Keep us updated.

[Tybee]

I'm with Steve--time to take charge (if you can.) And I would be looking for another doctor for her end of life issues.
Hang in there, kiddo-- you are a wonderful daughter.

[freshstart]

thanks all

[freshstart]

so my mom talked to the doctor's nurse, the doc won't do the prednisone or the celebrex, she doesn't think my mother is close enough to death to warrant the side effects. My mother reiterated that she literally has no quality of life and is essentially bed bound and suffering a great deal with shortness of breath and pain and that again she does not care if her life span is shortened if she can feel as good as she felt on steroids. They agreed to talk in one week and that the home visit will happen "soon". I asked my mother if I could call and reinforce that she has zero quality of life and wants to have a life and we all agree she was remarkably better on steroids. She won't let me call. I'm so frustrated. I would advise her that if she does not end up on steroids soon, that she consider switching to the group of doctors who make home visits all the time and gamble that they are better at end of life care. If only hospice would take her on the expensive breathing med or if only my mother would let me appeal hospice's decision not to take her. My mother is her only worst enemy sometimes, she doesn't want to ruffle feathers, meanwhile she cries just trying to walk to the BR. Ugh!

[razz]

Freshstart, just sending you a hug as there is not much that I can add to what you are doing and what has been said.

[freshstart]

I'll take that hug!

[lmerullo]

I'm sorry, freshstart. Hugs to you and your mom.

[TooSweetForMe]

Freshstart, I'm so sorry to hear that the Dr won't work with your Mom on the meds. What does he consider to be "soon" for the home visit? Prayers going up or you, her, and her family.

Mom has her MRI tomorrow afternoon.