"I just want a life"

[freshstart]

my mother is in the end stages of a terminal disease, it's very slow progressing and she is on a very expensive drug to breathe so she doesn't qualify for hospice. Which would make her life so much better because then she would get the pain medication and other quality of life meds that would make her life bearable. She is bed bound except to get up to the BR. She just went to the dentist yesterday and came home crying saying even though they did everything sitting up, she couldn't breathe at all and she would've taken death at that moment. So we are limiting her to only very essential doctors' appts.

2 weeks ago they took away one of her pain meds, celebrex, saying it would hasten her death. This came out of nowhere, she's been on it for years, has severe rheumatoid arthritis. A week off it, she could no longer open her hands and she would sob when walking to the BR from the pain in her feet. Her 50th Anniversary party was in a week, it was looking like we'd have to cancel. She called her doc to beg for the celebrex back and was given 5 days of steroids instead.

By day 3 (party day), she could breathe, was almost free of pain, she stopped falling asleep every five minutes, she was hungry and actually ate, she was happy and sat in the LR for 4 1/2 hrs for her party. She hadn't been in the LR in months.

Now the prednisone and celebrex are both gone. I told her to ask for the prednisone back, we use it in hospice all the time for just the reasons above, that she doesn't care if it shortens her lifespan. She called the nurse and started to cry when the nurse said she can't be on it all the time, she said, "I just want some semblance of a life, you do not understand, I have no quality of life the way I am." The nurse said she would call back. I so want this for my mom, the day of her party, her experience of it was the biggest gift she could've received. I don't care if it shortens her life if it improves it so much and she doesn't either. She's gone to this doc for 27 yrs (she's my doc too), she's usually pretty reasonable although she has not been great at pain management. She's supposed to make a home visit in July.

please send positive thoughts that my mom can get some peace and relief of suffering

[Chicken lady]

Oh Freshstart, I hope that your mom's Doctor does the right thing!

[rosarugosa]

How upsetting, Freshstart. I hope your Mom is able to get what she needs to be more comfortable!

[iris lilies]

I think I understand the primary roadblocks to your mother getting the treatment you think she should get. But humor me, what should happen in the ideal scenario to treat your mother of her current disease?

I did read carefully, and it sounds to me as though the doctor needs to prescribe Celebrex according to you view of things. But I'm not sure what else could happen. If she is taking "very expensive medicine" to keep her alive, it sounds as though she doesn't qualify for hospice because she doesn't have a six-month prognosis.

Why did the dr stop .celebrex all of a sudden?

[freshstart]

they stopped the celebrex because it would supposedly shorten her lifespan. idk why it was out of the blue. I think the insurance company caught it.

I think in the ideal scenario to treat her disease she would continue the expensive drug to breathe because it her helps her and off it she would die in 2 weeks per the hospice doc who evaluated her. We're not ready for her to stop that. ideally, she would get the prednisone back because that helped in so many areas when it comes to quality of life: pain, breathing, movement, activity, appetite and a sense of well being. IDK if she would need the celebrex in that scenario.

she doesn't qualify for hospice because she won't give up the expensive drug, which may keep her alive longer than 6 mos, when she is off it, she is blue and gasping for air, it's horrible. Once she stops swallowing or her quality of life is so poor she is ready to give up that med, we will go on hospice. As far as a prognosis, she has lived far longer than her doctors predicted, they say she could go any day in her sleep or perhaps she has months to a year.

[CathyA]

I'm so very sorry Freshstart. I really feel that people should receive any drug that makes them feel better, in the end stages. How shameful that some people/docs are not appreciating this fact.
Being on prednisone all the time can cause some problems down the road..........but who cares, if there's no down the road? I hope your mom can get some relief. It's shameful that the medical professionals/insurance companies can't/won't understand this.
I hope she can breathe better and be as pain free as possible. (((hugs)))

[Ultralight]

My heart goes out to you. Please take care as best you can. I am thinking of you.

[Tammy]

It's so frustrating that they make her choose between the expensive med and hospice. She would benefit from both simultaneously. Hospice doesnt always require the six month prognosis any more, from what I've heard.

[freshstart]

thank you so much for the support, I knew you guys would understand

hospice does not require a hard and fast 6 mos prognosis, they just ask doctors to think to themselves, "would I be surprised if this person dies within the next 6 mos?", then they bring the patient on and if they keep declining, they can stay on, I had patients on for two years as long as I could show decline. And then Medicare made a rule that comfort meds have to be covered even if they are expensive, so I saw people like my mom on the program on that med. Then I got sick and left, they went through a staffing and managerial crisis and they are not so good now, nurses leave and come through a revolving door. But what got me is a doc I worked side by side with for 11 yrs made the decision about my mother's med and bringing her on program. She wouldn't even look at me as she told my mom she couldn't come on until she stopped the breathing med and refused to answer when I said that's not in compliance with Medicare and we've had patients on it before. I wanted to appeal the decision to Medicare but my mom wants a good relationship with hospice for when she needs it.

So at the time she went on Palliative Care and that program was great but they closed and discharged all their patients (another questionable Medicare action). There is another palliative program in the area but right now my mom isn't interested. She hires the cleaning lady to shower her and has this wonderful concierge service through her insurance where a PA or NP comes out anytime, day or night for anything she needs. They are also willing to run intermediary with the primary doc to get things like the prednisone but this go round my mom wants to try to get it herself based on believing her doctor will understand about quality of life vs quantity.

[BikingLady]

I am so sorry. Been there Take care of yourself, I know easy to say.