Calling mom's onc about hospice

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maccupiccu
maccupiccu Member Posts: 67
edited June 2014 in Caring for Someone with Breast cancer

I talked with my mom yesterday. She just feels worse and worse. The leg edema is bad and the diuretics aren't helping. The oncologist's nurse FINALLY admitted that it's probably advancing cancer. Her cough since she came home from the hospital in Feb--same. She's living on Robitussin (dad's forcing it on her). She can't sleep (possibly Robitussin keeping her up). She can't get out of the house because of the stairs. Her cough is annoying to her. She's now becoming incontenent and not even realizing it until it's too late. Her doc wanted her to come in asap (like tomorrow) for an immediate CT (oral/dye contrast), doppler, blood, and something else with oral/dye contrast. She just doesn't want to do it. She and I feel that what is the point stressing out about trying to get out of the house, doing all that contrast (she hates it because of her IBS), going from one end of the hospital to the other, and all day mind you, only to be told "yep, this is it."

 I told her that my concerns are pain management and daily maintenance. If she's losing control now, then how the heck is my dad going to take care of her bowel/urine issues? He's not. He's in so much f'in denial it's sickening. He keeps telling her that she just needs to get up and move. Hello--she can't anymore. He keeps telling her to spit out her plegm. Um dad, it's not plegm, it's fluid in the lungs/CHF. We both are trying to tell him we need to get the doc to deem her a candidate for hospice and decide to stay at home and get it or go somewhere. The place she really wants to go to is $309 a day. He doesn't believe it (and what kills me is he can afford it).

I also need a living will/advanced directive for her. She/they don't have one. Their will is like from 1980 and that's all they have. Since he's totally incapable of doing the right thing, I want my name on there to make these decisions.

Will hospice help with anything like that? Since she can't get out of the house, I don't know if a lawyer will do this in the home.


What can I expect from in-home hospice and for how many visits? Will they require a hospital bed? I just got approved for one day a week FMLA because we thought it was going to be intermittent but now I"m thinking perhaps I should make it continuous. It's just right now, she doens't need me continuously so I don't want to take off of work and go unpaid for nothing.

With mother's day coming up and then her birthday in early June, I really don't know if she's going to make either yet I dont' know at this stage how far her disease is. I'm all for her refusing to do the testing but at the same time, I just don't know as of today what is in store for her.

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  • leggo
    leggo Member Posts: 3,293
    edited April 2012

    I'm in Canada, so the services may not be similiar. When you enter palliative care here, you always get the benefit of a social worker who will help you get your affairs in order. They usually have one of everything on staff, and if not they get it, so finding a lawyer to come to her shouldn't be a problem.They will definately help with pain management....that's their first priority. When I was at my sickest, I had a nurse come 2 days a week and an aid 3 times a week to help me with day-to-day issues. They supplied all medical equipment for me to use at home. I did have to sign a DNR order, though, but it sounds like your mother might be perfectly comfortable doing that. I can totally understand her not wanting to go in for the scan if all they can tell you is what you probably already know, but in order to satisfy the onc's requirements for referring her to hospice, that might very well be what she has to do. I'm so sorry. 

    ETA: I suspect if your mother says she gets no help at home, and tells him/her the situation with your dad, the social worker may see to it that she gets daily in-home-care. Just a guess though.

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  • maccupiccu
    maccupiccu Member Posts: 67
    edited April 2012

    Thanks. The key is to ensure that everything is covered by Medicare. From my understanding in the U.S. everything but room and board is covered. I sure hope so.

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  • leggo
    leggo Member Posts: 3,293
    edited April 2012

    I hope so too.

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  • 3monstmama
    3monstmama Member Posts: 1,447
    edited April 2012

    maccupiccu I'm so sorry.  Your mom's oncologist may be able to help with this.  Where we are, the hospital has a palliative care team--doctors, nurse and social worker--that helps with everything.  They should know exactly what needs to be done for a medicare patient.

    As for a lawyer, yes you need to get that done because without it, they will defer to your dad on her treatment.  I would suggest you try calling your local bar association or a non-profit senior center type place to see if they have attorneys who do wills etc they refer people too.  Another possibility would be an organization that provides assistance to gay/lesbians as they might be able to tell you about attorneys who are good at drawing up living wills/POAs quickly as having such a document is a big deal for non-traditional families.  You should be able to make sure the attorney has no active complaints or discipline issues by checking your state bar association website.

    Some lawyers may be willing to do a home visit but you will have to ask.

    good luck.

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  • camillegal
    camillegal Member Posts: 16,882
    edited April 2012

    I am so sorry for u'r family--this is very sad, but u seem to have a good handle on what to do.  I do believe all of this is for u'r Mom's drs. to sign paperwork for medicare to come in and take over. And hospital staff does alot of the paperwork--and ask them about the DNR--they are all familiar with how to handle these situations. We went thru something similiar with my Mom, but bless her heart she lived another 2 yrs with a lot of good days--we were surprised and so was the Dr. And what strange too (to me) a few yrs later when I was diagnosed I had my Mom's Dr. who I loved with my Mom and somehow I got her not planning it. So she gave us extra time with my Mom and saved my life--u never know. Good Luck---And if 'r near St. Luke's Hosp. go there.

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  • maccupiccu
    maccupiccu Member Posts: 67
    edited April 2012

    Just got off the phone. She's calling hospice referrals for her. She said she's untreatable at this point.

     Right now I feel strangly numb.

     She'll plan a meeting with hospice so I can be there as well. I told her that would be the best option. I'm the only one who really 'gets it'. Mom is terrified. Dad is in denial. They are in no shape to handle this news.

    At least the doc is prescribing pain/sleep meds.

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