View Full Version : "I just want a life"
freshstart
6-22-17, 6:45pm
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
6-22-17, 7:33pm
Oh Freshstart, I hope that your mom's Doctor does the right thing!
rosarugosa
6-22-17, 8:16pm
How upsetting, Freshstart. I hope your Mom is able to get what she needs to be more comfortable!
iris lilies
6-22-17, 8:35pm
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
6-22-17, 9:06pm
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.
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
6-22-17, 10:06pm
My heart goes out to you. Please take care as best you can. I am thinking of you.
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
6-23-17, 2:36am
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
6-23-17, 8:55am
I am so sorry. Been there:( Take care of yourself, I know easy to say.
Sad Eyed Lady
6-23-17, 9:06am
It feels sometimes like humanity has gone out of medicine with insurance companies making so many of the decisions about care. My thoughts go to you along with all the others here for a solution to this that is the best for your mom. And as BikingLady said, take care of yourself too at this time.
I have had quality of life problems all through my life. My joints are bad, my muscles hurt for no reason, my neuro system is over-active, etc., etc. Recently, I was having joint/muscle problems and got a knee steroid injection. They say it's not supposed to go systemic, but mine certainly did. After the initial couple days of freaking out with anxiety (which can be normal with steroids), my life became perfect........No pain anywhere.....at all. That lasted about 10 days, and it was probably the first time in the past 25 years that I was pain free. I was in heaven. It eventually wore off and I wouldn't do it again, since it can make joints worse.
But to get to the point.......I truly thought "why is this treatment (steroids) not considered okay for people who are terminal? It seems like such a compassionate way to deal with pain and depression of terminal illnesses.
So Freshstart, I'm hoping that your mom can get the feelings I had when I was on it for a short while. She just wants some relief and I truly hope she can get it.
I don't understand why she does not qualify for hospice, as this certainly sounds like it might be appropriate? Can she not have the expensive breathing drug if she is in hospice?
Might this be a good time to reevaluate doctors and consider changing?
Teacher Terry
6-23-17, 11:23am
This is so ridiculous. Your Mom deserves quality of life and it would be so scary not to be able to breathe. Hugs:))
freshstart
6-23-17, 1:22pm
she probably qualifies for hospice and under new Medicare guidelines hospice has to pay for comfort meds no matter how expensive they are, her breathing med would qualify. But we only have one local hospice and it's up to the hospice medical director who comes on. Last time they rejected her because of the med even though I pointed out they were obligated to pay for it. They said they'll take her when she is willing to stop the med, which would give her two weeks to live once she stops it. She's not ready to do that and she wouldn't let me appeal the decision with Medicare because she wants a good relationship with them once she is ready for hospice. She got screwed but she wouldn't let me do anything about it.
If her doctor refuses the prednisone or at least the celebrex and doesn't make a home visit in a timely manner (we've been waiting months), I'm going to suggest to my mom that she switch to the one group of doctors who make home visits. But I don't know anything about them or their approach to end of life care.
I'm able to do self care because I am disabled and we live together so I'm not working and then rushing over to her house everyday. It's emotionally wrenching but I have a great shrink.
thanks for all your kind words
TooSweetForMe
6-23-17, 1:30pm
freshstart, so sorry to hear about this. Prayers going up for all in the situation for the best judgement and outcomes for the situation. Did the Dr at least put your Mom back on the prednisone and/or celebrex?
freshstart
6-23-17, 1:33pm
neither yet
Aren't there doctors who specialize in pain management? Surely your mother's situation calls out for that.
Aren't there doctors who specialize in pain management? Surely your mother's situation calls out for that.
Good call.
Best of luck to you, freshstart. It's torture watching loved ones suffer needlessly.
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....
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
6-24-17, 7:53am
neither yet
I'm so sorry to hear that - more prayers going up. Keep us updated.
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
6-24-17, 12:50pm
thanks all
freshstart
6-27-17, 7:30pm
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!
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
6-27-17, 8:51pm
I'll take that hug!
I'm sorry, freshstart. Hugs to you and your mom.
TooSweetForMe
6-28-17, 8:06am
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.
freshstart
6-28-17, 8:46am
thank you. Soon is July supposedly.
Good luck with the MRI
Freshstart, we had the mixed pleasure of living in Western New York for 6 years full time and 4 years part time. All I can say is, things move really show, no one likes change, and their is an obduracy in many folks that I have never encountered anywhere else. It took literally 10 years before people at the bank would talk to us, and by then we were moving to South Carolina.
I am so sorry your doctor is putting your mother through this.
PS: whole kit and kaboodle of you should move to South Carolina--folks are very, very nice down there, and it is a great retirement community, and your health might improve with the better weather!
freshstart
6-28-17, 3:21pm
My parents have really good teams of doctors up here (well, my mom maybe not so much), my dad has very complicated health issues, he has a mitochondrial disease that only 400 people in the world have. We finally have doctors who have researched it and it's affect on his organs. I youldn't begin to move them because of that, I'd have to deal with my mom 's hoard and they simply don't want to go, they want to be near out family. When one of them passes, I am hoping I will be old enough to move us into a retirement community. Right now I'm only 47
Freshstart - would you please ask your mother's doctor how, exactly, will Celebrex shorten her life? I'm a pharmacist, and this is a new one on me. There are a couple of studies showing it increasing the life span in lower life forms. Also, it's available as a generic now, so the cost should go down if you would choose that option.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3094508/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4637296/
freshstart
6-28-17, 5:22pm
thanks for this information very much
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. freshstart, I have no idea why your mother does not want you to act as her representative for her care or why she is unwilling to advocate for herself -- unless she's just given up (I don't mean to be blunt, but sometimes people decide. I do not know if that's the case here). I just wish you peace in honoring her wishes and wisdom to find the words that might trigger a change of her mind if she really wants things to change.
freshstart
6-28-17, 6:50pm
she's kind of given up that her pain will ever be managed and she has a close relationship with this doctor that has lasted 27 yrs and has generally been very good. She has always been a person who puts herself last and doesn't want to ruffle feathers and she knows I am not that type of person. So far she has agreed that I can be present when the doctor makes the house call, I plan to speak my mind then. Right now it's an exercise in frustration. My dad is starting to forget stuff and cannot drive so I go into all MD appts, it has been eye opening how much of an MD's instructions he forgets. So he lets me advocate for him and so far it's been smooth sailing.
TooSweetForMe
6-29-17, 7:56am
thank you. Soon is July supposedly.
Good luck with the MRI
Thank you so much. On one hand, I hope they find nothing wrong but on the other hand if they find something wrong, maybe it will explain the sudden hearing loss on the right side.
Freshstart - would you please ask your mother's doctor how, exactly, will Celebrex shorten her life? I'm a pharmacist, and this is a new one on me. There are a couple of studies showing it increasing the life span in lower life forms. Also, it's available as a generic now, so the cost should go down if you would choose that option.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3094508/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4637296/
I'm glad you asked that question, because I was wondering the same thing. I'm not a pharmacist--I only have a very basic understanding of NSAIDs but I can't figure out why Celebrex would shorter anyone's life, either. freshsart, did the doctor ever specifically say what her concerns were?
And I dont trust my elderly MinLaw to tell us the truth. Some of it is lack of hearing, some total lack of understanding, some too trusting of a doctor's statements even if misunderstood, etc.
Then there is the issue of what she is hearing from friends and other residents of the building she lives in. Oh my gosh the stories she believes.
freshstart
6-29-17, 9:16am
I'm glad you asked that question, because I was wondering the same thing. I'm not a pharmacist--I only have a very basic understanding of NSAIDs but I can't figure out why Celebrex would shorter anyone's life, either. freshsart, did the doctor ever specifically say what her concerns were?
we still haven't gotten to ask the doctor directly why. I'm guessing it's because she's on coumadin or somehow related to her heart condition, primary pulmonary hypertension. there have been a lot of med she can't take because of that
Cannabis seems to help a lot of people with chronic pain--is that an option in your state?
I admit I haven't experimented much with it myself, and it seems to require experimentation, but I have friends who have managed to avoid opioids by using it.
freshstart
6-29-17, 2:38pm
medical marijuana is only available in less effective tablet form and the dispensaries are only in NYC so far. My dad just bought CBD oil, a component of marijuana that helps with pain. His doctors encouraged him to try it so we'll see if it works for him and then we'll try mom. My son uses marijuana for anxiety and offered to "hook" my parents up but pot got expensive, it's $225 an ounce!
my mom is opiod dependent, I'd like to see her on methadone instead of her current opiates but that will only happen once she goes to hospice. My dad has lortab and flexeril and probably should be using at lest the flexeril but won't. He is very tough on himself when it comes to pain. He can't take NSAIDS because he's on coumadin so he's left with tylenol so I hope the CBD helps him.
I haven't found CBD particularly effective, but I once made tea from some unknown strain of bud and my arthritis pain miraculously vanished for the duration. I'll have to try that again. Whatever it was, it wasn't particularly psychoactive--which I like, because I'm not looking to get high. I'm with your father re painkillers--you have to weigh the costs and benefits, and opioids are nightmarishly addictive. Fortunately for me, my pain is at the discomfort level, unnoticeable unless I try something stupid--like moving. :D The study of cannabis strains and their various applications is hampered by the foolish and archaic federal regulations surrounding marijuana. I hope that changes for the better some time soon. And I hope you manage to come up with workable solutions for both your parents' dilemmas. Doing so shouldn't be so much work.
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