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Post by twinks on Sept 13, 2021 22:02:27 GMT
My thoughts have been with you and Gary. I am sorry for all that you are going through.
As far as the Hospice nurse goes, I would probably call back and talk to the gentleman who came initially and explain things to him. You and Gary need to do what you feel comfortable doing and above all make sure you understand why and what. You both will know when it is time to stop treatment or when you have simply had enough. Make sure they know what you want and how they can help.
You definitely need a notebook, or even a couple of notebooks. We had one for meds and the time of the last dose. In that it was the chemo notebook as well. We listed the side effects, blood pressure checks, etc. We had a notebook for professionals - Dr appointments, professionals that came in our home, lab work, ER visits, etc. We had this for insurance purposes. When we got the bill we put it in the notebook and then added any EOBs (explanation of benefits) with it. We also listed when we paid our portion. It is all just too much to keep track of when you are emotionally and physically exhausted.
I would talk to the social worker at Moffit. Some of them are great and extremely helpful. Use your cancer center. List the side effects of his current chemo and when you go for more, talk to the nurses and see if they have tricks.
Again, my thoughts are with you and Gary. This is a hard thing to go through.
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Post by cakediva on Sept 13, 2021 22:03:30 GMT
((((Hugs)))) I’m so sorry your are going through all this.
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Post by jenjie on Sept 13, 2021 22:05:00 GMT
tinydogmafia thank you. Thank you for your kindness to our friend and for the difficult, important job you do every day.
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Deleted
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Post by Deleted on Sept 13, 2021 22:12:17 GMT
It sounds like they have admitted him into Hospice with a terminal diagnosis and less than 6 months to live, as opposed to palliative care. I'm a Florida nurse with lots and lots of experience with Hospice admissions. Did they explain to you that nothing will be covered outside of terminal medications? This is why they have dc'd most of his meds, and discouraged chemo. You cannot have two Medicare benefits at the same time, and what has happened is that Hospice is now the primary benefit, not Moffitt. Chemo will be paid for by Hospice only if they deem it necessary for his comfort. Please PM with with questions about this because it can be VERY confusing. Unfortunately, no matter how gentle they try to convey the graveness of the situation, it is never easy to hear. I'm sorry that you guys felt it was upsetting. And much of the time, no matter how frank the doctors are, it's the Hospice nurse that bears the burden of frankness. I am so sorry for all you are going through. Please, please, I am urging you to understand your hospice benefit completely. If it was not explained properly please call admissions and ask for the social worker to come out and break it down for you. I have a feeling that things were not laid out properly here. It sounds like Hospice is under the impression that they are there to make your husband comfortable for end of life as opposed to palliative care, which is what I think you were looking for. We knew that his diagnosis was terminal, but his oncologist gave him a few months to a year or so. We hoped that with the chemo, it might extend his life up to a year if possible. Thank you for your explanations. It's helpful. WHat is confusing is that we had two sessions with the intake person who made sure that DH qualified for hospice. We discussed with him our plan of finishing the other 3 day chemo in 3 weeks. He checked and said it was fine. He asked us to run by hospice anything else that Moffitt may want to do (scans, etc), but that he could keep going to see his oncologist there. Then today the RN came and everything seemed COMPLETELY different. She wasn't only frank about his timeline (we knew that). She was frank and curt about either choosing hospice fully or getting out. We both felt that she wanted DH off of his regular meds, increased his pain meds immediately and wanted everything done thru hospice. We wanted to keep Moffitt until this next round of chemo was completed and then see where he's at.
She did explain about what's covered within hospice's medications and chemo, etc. He'll still be getting a few Rx's through our regular pharmacy through our LIS (Low Income Subsidy) card. Hospice won't cover the post-chemo injection, Neulasta, that he just received, but they explained that it could be given at home via daily injections instead. That's fine.
They did say that the meds they cut out were too dangerous regarding his liver or kidneys, so they kept his Paxil, Carvedilol, Trelegy, Iron, Cartia XT, Ventolin, Fluticasone nasal spray, Xanax. They cut out many of his meds. They added pain meds that they delivered already. Now I'm wondering if he will be covered for those usual monthly meds....
Hospice's social worker is due to come out "soon" and talk to us. I'm sure they'll explain things we didn't know.
As far as hospice explaining end of life comfort, I assumed that their goal was to keep him comfortable as long as he's able to fight this cancer, whether that's a month or 12 months. This RN said that we should never go by the expected dates to live, and that he COULD beat the odds, but it felt like they were considering him to be beyond help. Maybe it was just a lot for us to take in. I know that we could drop out and back in if we feel we need to. Right now we have 2 weeks to figure it out because we had so many questions. We'll see how DH is feeling and whether he wants to do the chemo at the end of the month and we'll see if they'll kick him off of hospice at that time.
Thanks again for laying things out more clearly. I hope I'm getting it right.
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Post by papersilly on Sept 13, 2021 22:13:39 GMT
when my mom went into hospice, i don't think we found anything about it to be "upsetting". my mom was just happy to be home and we were happy about that too. her condition was a bit different in that there was no chemo or other life extending measures that could be performed. hospice, for her, was to facilitate as gentle a glide to the end as possible and to end all the invasive procedures. the hospice people told us there were many people who "graduated" from hospice and returned to regular health care. we knew this would not be our mom but it was nice to know some people made it out. if anything was overwhelming, it's all the resources they offered to us. the bath nurses, chaplain, funeral planning, the respite (we had full time caregivers so thankfully we didn't need that), the social workers and counseling. for us, we mainly needed the comfort measures and any care they could provide that would prevent the trauma to my mom of having to go back to the hospital for this or that if it was not going to change her outcome. we just appreciated the regular nurse visits and 24-hour access to the staff we had equipment needs, more meds, or there were changes in her condition, etc. what made hospice easier for us was that we started is as soon as possible and didn't wait until death was imminent. my mom was in hospice for almost 5 months. that gave us time to establish a routine with the hospice staff. they got to know her and her needs. they got in before things became chaotic or dire. i think that made the biggest difference. it truly did.
ON THE OTHER HAND, when FIL went into hospice, MIL was unhappy about it the whole time. first she wouldn't bring hospice in because she didn't want strangers in her house. never mind that my FIL was the actual patient. she also expected hospice to provide live in care during that time (which they definitely do not and we told her that). she wasn't happy with all the extra medical equipment in the house. i'm not going to go into detail about the rest of it but i think you guys get the picture.
in short, hospice is what you make of it. it really can be helpful if you embrace the process and it can be upsetting if your goals are not aligned. if life prolonging measures are your priority, then you need to discuss that with hospice to see how it affects the services they provide to the patient. make as much or as little use of their resources as you want. they may not be able to provide you with everything but their scope of services can be significant enough for the patient.
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Nov 23, 2024 19:14:52 GMT
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Post by Deleted on Sept 13, 2021 22:17:36 GMT
@bergdorfblonde first of all I am so sorry. 😔 does the cousin know anything about hospice? Just because he knows meds doesn’t mean he understands this. I’m not saying that to be mean. Since he is someone you trust and he appears at least somewhat knowledgeable, see if the doc will talk to him if he (cousin) is willing. Our situation was different. We were told immediately that Fred’s situation was so dire that if the first round of chemo didn’t work, hospice would be the next step. Thankfully it did work and we were able to have a few more months. But the doctor was very pleasantly surprised. Honey it sounds like maybe after that last test, it became evident to the docs that Gary’s situation is worse than they thought. I’m so sorry. The idea of hospice is to keep them comfortable for the time they have left. You can talk to his team. It's my brother who is a doctor (and my aunt and uncle in California). Yes, my brother is familiar with hospice and he agreed with their protocol. He thought that chemo and the travelling, etc., was to burdensome on Gary for a very slim chance at a little more time.
Gary just finished that round of chemo. His oncologist at Moffitt still wanted him to do the 2nd round at the end of the month. No tests were done after this weekend's chemo. I'd think she wouldn't put him through more chemo if she thought it had no chance. We were going to reassess after the next chemo........
What you said makes sense. Even though what hospice could provide right now would be VERY helpful (and it seems that's where he's at!), it'll be his choice if he wants to still do the 2nd round of chemo and give it a chance. We could always add hospice back after that chance.
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scrappinghappy
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Post by scrappinghappy on Sept 13, 2021 22:23:47 GMT
I am so sorry to see the update. Sending prayers and a hug.
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Post by Deleted on Sept 13, 2021 22:27:00 GMT
My thoughts have been with you and Gary. I am sorry for all that you are going through. As far as the Hospice nurse goes, I would probably call back and talk to the gentleman who came initially and explain things to him. You and Gary need to do what you feel comfortable doing and above all make sure you understand why and what. You both will know when it is time to stop treatment or when you have simply had enough. Make sure they know what you want and how they can help. You definitely need a notebook, or even a couple of notebooks. We had one for meds and the time of the last dose. In that it was the chemo notebook as well. We listed the side effects, blood pressure checks, etc. We had a notebook for professionals - Dr appointments, professionals that came in our home, lab work, ER visits, etc. We had this for insurance purposes. When we got the bill we put it in the notebook and then added any EOBs (explanation of benefits) with it. We also listed when we paid our portion. It is all just too much to keep track of when you are emotionally and physically exhausted. I would talk to the social worker at Moffit. Some of them are great and extremely helpful. Use your cancer center. List the side effects of his current chemo and when you go for more, talk to the nurses and see if they have tricks. Again, my thoughts are with you and Gary. This is a hard thing to go through. Thanks. The gentleman who signed Gary up didn't leave a trace of his whole name or info. I looked everywhere!!! I guess I could try to track him down.
Hospice did give us a binder with different sections in it. I didn't see anything where I could input information at all. They said that everything with hospice will NOT be billed to us; everything is covered through his Medicare. I hope that's true. They are the same company who handled his home health nurses, etc., after his initial chemo 18 mos ago. That's where we got the idea to try talking to them. He had their home health until just last week.
The social worker at Moffitt only had a few resources to help (like getting him a walker). As far as handling the side effects of this chemo, he was given an anti-nausea Rx, but hospice said they'd increase it to a stronger Rx. Nothing else was said from Moffitt about the side effects. He did have the Nuelasta patch which was to help boost his immune system post-chemo. Hospice wouldn't cover that, but they said they had injections daily which were similar.
One more thing: When you mentioned ER visits, does that mean a local ER?? We've been avoiding any hospitals here at all costs because of Covid being so very rampant here. It's one more reason why going to Moffitt was beneficial. They at least have an urgent care and a hospital post-surgery.
Thanks so much.
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Post by jenjie on Sept 13, 2021 22:27:30 GMT
@bergdorfblonde first of all I am so sorry. 😔 does the cousin know anything about hospice? Just because he knows meds doesn’t mean he understands this. I’m not saying that to be mean. Since he is someone you trust and he appears at least somewhat knowledgeable, see if the doc will talk to him if he (cousin) is willing. Our situation was different. We were told immediately that Fred’s situation was so dire that if the first round of chemo didn’t work, hospice would be the next step. Thankfully it did work and we were able to have a few more months. But the doctor was very pleasantly surprised. Honey it sounds like maybe after that last test, it became evident to the docs that Gary’s situation is worse than they thought. I’m so sorry. The idea of hospice is to keep them comfortable for the time they have left. You can talk to his team. It's my brother who is a doctor (and my aunt and uncle in California). Yes, my brother is familiar with hospice and he agreed with their protocol. He thought that chemo and the travelling, etc., was to burdensome on Gary for a very slim chance at a little more time.
Gary just finished that round of chemo. His oncologist at Moffitt still wanted him to do the 2nd round at the end of the month. No tests were done after this weekend's chemo. I'd think she wouldn't put him through more chemo if she thought it had no chance. We were going to reassess after the next chemo........
What you said makes sense. Even though what hospice could provide right now would be VERY helpful (and it seems that's where he's at!), it'll be his choice if he wants to still do the 2nd round of chemo and give it a chance. We could always add hospice back after that chance.
I’m sorry I read what you said about the pharmacist at the end of your post and got confused. If your brother who is a doctor is on board that makes me feel a little better. But bring up your concerns with him and see how he suggests you handle the next conversation. It sounds like you, Moffitt and hospice all need to be in on the same conversation so everyone is on the same page. |
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ddly
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Post by ddly on Sept 13, 2021 22:28:19 GMT
You and Gary remain in my thoughts!!
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moodyblue
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Location: Western Illinois
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Jun 26, 2014 21:07:23 GMT
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Post by moodyblue on Sept 13, 2021 22:35:53 GMT
In my experience, hospice care is intended to make the patient comfortable for whatever time is left and no active treatments are part of that, only meds and things like breathing treatments that deal with comfort. They goal isn’t to extend life as long as possible, although some people go in and out of hospice. I was asked about keeping the outside doctor (oncologist in my husband's case) as primary doctor or signing to have the hospice doctor as primary. It was my/our choice, but typically an outside doctor might not be very involved once you’ve entered hospice care.
My husband was not on Medicare when he was in hospice, and you’ve gotten good information from others who know more about that than I do.
Vince’s oncologist had already told us that we were probably looking at only days to a couple weeks, so there was no treatment offered. I know someone else who was in hospice around the same time, but he actually improved enough to leave hospice care; he made it another two years, with some decent quality of life. But that’s not the usual course once you’ve decided on hospice care.
I think you might feel better if you talk to his primary oncologist at Moffitt and say you want an honest assessment of what to expect, given his cancer and his personal condition. You may feel more confident about whatever decision you make, whether it’s to keep trying chemo or whether it’s to shift to comfort only. It’s easy for other people to say that you have to try everything possible - but that may NOT be what Gary ultimately wants. Only HE can really make that decision. If he gets another couple months by doing chemo, but he’s miserable and weak and sick, he may decide that that’s not how he wants to spend the rest of his life - or he may want every last second he can have. Neither decision is right or wrong; it’s only what he decides for himself.
I know how hard it is to be facing this situation - it’s not what you wanted, not what you ever really expected to face, not where you want to be. And I’ve found that, all too often, it’s a rather sudden shift - away from planning treatments to planning for the end. It’s shocking, jarring, and surreal in many ways. And when you guys have a history of beating back each complication and pulling through tough times, it’s hard to accept that there may not be another rally.
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Post by Deleted on Sept 13, 2021 22:38:11 GMT
when my mom went into hospice, i don't think we found anything about it to be "upsetting". my mom was just happy to be home and we were happy about that too. her condition was a bit different in that there was no chemo or other life extending measures that could be performed. hospice, for her, was to facilitate as gentle a glide to the end as possible and to end all the invasive procedures. the hospice people told us there were many people who "graduated" from hospice and returned to regular health care. we knew this would not be our mom but it was nice to know some people made it out. if anything was overwhelming, it's all the resources they offered to us. the bath nurses, chaplain, funeral planning, the respite (we had full time caregivers so thankfully we didn't need that), the social workers and counseling. for us, we mainly needed the comfort measures and any care they could provide that would prevent the trauma to my mom of having to go back to the hospital for this or that if it was not going to change her outcome. we just appreciated the regular nurse visits and 24-hour access to the staff we had equipment needs, more meds, or there were changes in her condition, etc. what made hospice easier for us was that we started is as soon as possible and didn't wait until death was imminent. my mom was in hospice for almost 5 months. that gave us time to establish a routine with the hospice staff. they got to know her and her needs. they got in before things became chaotic or dire. i think that made the biggest difference. it truly did. ON THE OTHER HAND, when Fn't IL went into hospice, MIL was unhappy about it the whole time. first she wouldn't bring hospice in because she didn't want strangers in her house. never mind that my FIL was the actual patient. she also expected hospice to provide live in care during that time (which they definitely do not and we told her that). she wasn't happy with all the extra medical equipment in the house. i'm not going to go into detail about the rest of it but i think you guys get the picture. in short, hospice is what you make of it. it really can be helpful if you embrace the process and it can be upsetting if your goals are not aligned. if life prolonging measures are your priority, then you need to discuss that with hospice to see how it affects the services they provide to the patient. make as much or as little use of their resources as you want. they may not be able to provide you with everything but their scope of services can be significant enough for the patient. Thank you. THIS is where we feel we've been at (maybe because we have no family or friends here). It's become just too much on DH physically to get to Moffitt, or get to appointments, etc. Not that he's willing to give up on one more round of chemo just yet, but we do agree that the help Hospice could bring would be wonderful!! We've already seen the chaplain and DH found it comforting ("better than therapy"). They're bringing home equipment to help, tomorrow. They've set up an aide to give sponge baths (he hasn't had the strength to get in the shower). There won't be a funeral of any sort, due to our financial situation. DH explained that the V.A. would do a cremation for free, and hospice said they'd transport him directly there when the time comes, so that's a help. We do know about the 24/hour access to staff, etc. They already sent over a sealed box of meds in case he needs to increase what he has (and it's in the middle of the night, etc.). We appreciate the family getting care and support, very much!
The only upsetting factor was the difference of the gentleman who signed DH up and his wording or attitude, and then today's RN in charge, who basically said that he'd have to stop Moffitt and their chemo/care, and just use them. That's a HUGE leap and DH explained to the gentleman signing him up that he had one more round of chemo at the end of the month. He said it shouldn't be a problem, but apparently it is. We have 2 weeks to see if we want to stay with Moffitt or use hospice completely. We'll see how DH is feeling by then.
Thank you for your experiences and I'm sorry you had to go through that tough period.
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Post by tinydogmafia on Sept 13, 2021 22:40:00 GMT
It's helpful. WHat is confusing is that we had two sessions with the intake person who made sure that DH qualified for hospice. We discussed with him our plan of finishing the other 3 day chemo in 3 weeks. He checked and said it was fine. He asked us to run by hospice anything else that Moffitt may want to do (scans, etc), but that he could keep going to see his oncologist there. Then today the RN came and everything seemed COMPLETELY different. She wasn't only frank about his timeline (we knew that). She was frank and curt about either choosing hospice fully or getting out. We both felt that she wanted DH off of his regular meds, increased his pain meds immediately and wanted everything done thru hospice. We wanted to keep Moffitt until this next round of chemo was completed and then see where he's at. I am certain that they have admitted him under end of life care. I live one county away from you and work closely with all Hospices in a large area of Florida. The reason she pushed for all in or all out is because as I said, his cancer treatment is no longer covered under any government benefit he is receiving, which I am assuming in his case is Medicare, from the moment he signed his contract with Hospice. She was trying to get you to understand that. Unfortunately it sounds as though she wasn't very patient with you. Did he also sign a DNR? Some chemos require you to not have a DNR, please double check that just in case. Again, please PM me or call your social worker at Hospice, NOT MOFFITT, and get it situated before he's turned away from Moffitt for payment or DNR issues. I say this as a nurse with lots of hospice experience and a SO that has terminal cancer. I know where you're sitting and it's very overwhelming for both of you. (((Hugs))) |
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twinsmomfla99
Pearl Clutcher
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Post by twinsmomfla99 on Sept 13, 2021 22:46:45 GMT
I am so sorry you are going through this. But please, take advantage of the family counseling services if they are offered by your Hospice.
You and Gary are both grieving right now, and a counselor can be of great help when it comes to making decisions about where to go from here.
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Deleted
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Post by Deleted on Sept 13, 2021 22:47:44 GMT
In my experience, hospice care is intended to make the patient comfortable for whatever time is left and no active treatments are part of that, only meds and things like breathing treatments that deal with comfort. They goal isn’t to extend life as long as possible, although some people go in and out of hospice. I was asked about keeping the outside doctor (oncologist in my husband's case) as primary doctor or signing to have the hospice doctor as primary. It was my/our choice, but typically an outside doctor might not be very involved once you’ve entered hospice care. My husband was not on Medicare when he was in hospice, and you’ve gotten good information from others who know more about that than I do. Vince’s oncologist had already told us that we were probably looking at only days to a couple weeks, so there was no treatment offered. I know someone else who was in hospice around the same time, but he actually improved enough to leave hospice care; he made it another two years, with some decent quality of life. But that’s not the usual course once you’ve decided on hospice care. I think you might feel better if you talk to his primary oncologist at Moffitt and say you want an honest assessment of what to expect, given his cancer and his personal condition. You may feel more confident about whatever decision you make, whether it’s to keep trying chemo or whether it’s to shift to comfort only. It’s easy for other people to say that you have to try everything possible - but that may NOT be what Gary ultimately wants. Only HE can really make that decision. If he gets another couple months by doing chemo, but he’s miserable and weak and sick, he may decide that that’s not how he wants to spend the rest of his life - or he may want every last second he can have. Neither decision is right or wrong; it’s only what he decides for himself. I know how hard it is to be facing this situation - it’s not what you wanted, not what you ever really expected to face, not where you want to be. And I’ve found that, all too often, it’s a rather sudden shift - away from planning treatments to planning for the end. It’s shocking, jarring, and surreal in many ways. And when you guys have a history of beating back each complication and pulling through tough times, it’s hard to accept that there may not be another rally. Thank you. Of course cancer is never what anyone ever wanted. He's made it through his last 9 year bout with cancer. This time was much more serious, instantly.
You are right--it's up to GAry what he wants and when he wants it. This depends on how he's feeling the next week or so after this past weekend's chemo. EVerything else has been very difficult on him.
And, yes, I've been so busy with planning treatments and doctor dates/chemo dates, so shifting to planning for the end is akin to giving up, but we (I!!) have to face that we're there. Doesn't seem like this time there will be another rally and beating this. You're 100% right.
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Post by scrapmaven on Sept 13, 2021 22:50:27 GMT
We brought in hospice when my mother was dying from terminal cancer. Our first experiences were not good, but we called and protested loudly and then things really improved, because my sister and I stayed on top of it every single day. It was a fluke experience and not what you would ever expect from hospice. We relied upon my mother's oncologist for guidance at the beginning. By the time we got to hospice her oncologist had already stopped her regular meds and she was on comfort care with only pain and anti anxiety meds. That was at the direction of her oncologist. Our 2nd nurse was really kind and she even helped take care of my dad when he had a heart attack twd the end of my mom's life. It wasn't her job, but she took good care of him while he was recovering from the heart attack.
Hospice considers the entire family to be the patient. Ask lots of questions and when in doubt always ask. In your situation I would call Moffitt and talk to the advice nurse or patient advocate. Then I would discuss your concerns about what the hospice is directing you to do, stopping meds, etc. Since your dh is still going to have chemo, the Moffit doctors should run the show. They might think that hospice is a great idea and it probably is, but you want to let your experienced, trusted oncologists to make the decisions first.
This is the nightmare that we don't want and I'm so sorry that you're here. May you find ways to nurture and take care of yourself during this storm. It's important that you practice great self care, so that you don't get sick with any of your health issues. ((((HUGS)))).
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Post by Linda on Sept 13, 2021 22:52:10 GMT
It's as though we're saying that we give up and we're just asking them to make Gary comfortable. It ALMOST sounds like they want him to enjoy life as much as he can and not worry about "more time". That scares me. ((((Hugs))) It's not giving up but the goal of Hospice is quality of life more than quantity of life so yes, their aim is for him to be as comfortable as possible and to limit side effects that are going to negatively impact quality of life. And quite frankly, with our family members who were on hospice (two with terminal cancer, one with kidney failure) it did feel like they got more good days during their remaining time than they had been having prior to hospice and I think those good days were important to both them and to us. I'll keep praying |
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Post by hop2 on Sept 13, 2021 22:53:01 GMT
Neither my mother nor my father had any medications stopped ( or started ) by hospice. That was all determined by their regular doctors and the hospice personnel just carried out the orders given.
I’m so sorry your going thru all of this
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Post by malibou on Sept 13, 2021 22:53:10 GMT
Oh kitten, I'm so sorry. I wish both you and Gary peace while you navigate your way thru these tough decisions. xoxo
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Nov 23, 2024 19:14:52 GMT
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Post by Deleted on Sept 13, 2021 22:59:10 GMT
It's my brother who is a doctor (and my aunt and uncle in California). Yes, my brother is familiar with hospice and he agreed with their protocol. He thought that chemo and the travelling, etc., was to burdensome on Gary for a very slim chance at a little more time.
Gary just finished that round of chemo. His oncologist at Moffitt still wanted him to do the 2nd round at the end of the month. No tests were done after this weekend's chemo. I'd think she wouldn't put him through more chemo if she thought it had no chance. We were going to reassess after the next chemo........
What you said makes sense. Even though what hospice could provide right now would be VERY helpful (and it seems that's where he's at!), it'll be his choice if he wants to still do the 2nd round of chemo and give it a chance. We could always add hospice back after that chance.
I’m sorry I read what you said about the pharmacist at the end of your post and got confused. If your brother who is a doctor is on board that makes me feel a little better. But bring up your concerns with him and see how he suggests you handle the next conversation. It sounds like you, Moffitt and hospice all need to be in on the same conversation so everyone is on the same page. Thanks so much, Jen. I agree! Hospice immediately got in touch with Moffitt/Oncologist. She's hard to get ahold of. She's also hard to get answers from. Her goal was to try to do these 2 chemo rounds and then assess if they impacted him. I'm sure she doesn't want to deviate from that unless Gary is having a bad time of it post-chemo. Right now it'll be up to Gary if he wants to stop chemo and just focus on staying at home with hospice. Hopefully we'll get to do that 3 way conversation within those 2 weeks.
One more thing: We DID opt to use hospice as Gary's primary care, since our own PCP is terrible. That was an easy decision. Giving up on Moffitt is a much tougher decision.
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Post by peasapie on Sept 13, 2021 22:59:35 GMT
For my MIL in hospice, we were asked if we wanted to discontinue certain regular medications (eg diabetes meds) and we said yes. However, we were given the choice about that. We were also told all meds had to be ordered through hospice.
I'm so sorry things are confusing and moving so quickly. Please know we are thinking of you!!
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Post by Deleted on Sept 13, 2021 23:01:49 GMT
Neither my mother nor my father had any medications stopped ( or started ) by hospice. That was all determined by their regular doctors and the hospice personnel just carried out the orders given. I’m so sorry your going thru all of this Gary's primary doctor (actually her RN) stopped a few Rx's after the liver diagnosis, the bone diagnosis and seeing that his chronic kidney disease went to stage 3 quickly. Since DH chose hospice to take over as his primary doctor, they added a few more meds to stop since they were also too dangerous at this time. |
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Post by hop2 on Sept 13, 2021 23:11:14 GMT
Neither my mother nor my father had any medications stopped ( or started ) by hospice. That was all determined by their regular doctors and the hospice personnel just carried out the orders given. I’m so sorry your going thru all of this Gary's primary doctor (actually her RN) stopped a few Rx's after the liver diagnosis, the bone diagnosis and seeing that his chronic kidney disease went to stage 3 quickly. Since DH chose hospice to take over as his primary doctor, they added a few more meds to stop since they were also too dangerous at this time. It must all be so confusing Hugs |
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Deleted
Posts: 0
Nov 23, 2024 19:14:52 GMT
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Post by Deleted on Sept 13, 2021 23:13:58 GMT
It's helpful. WHat is confusing is that we had two sessions with the intake person who made sure that DH qualified for hospice. We discussed with him our plan of finishing the other 3 day chemo in 3 weeks. He checked and said it was fine. He asked us to run by hospice anything else that Moffitt may want to do (scans, etc), but that he could keep going to see his oncologist there. Then today the RN came and everything seemed COMPLETELY different. She wasn't only frank about his timeline (we knew that). She was frank and curt about either choosing hospice fully or getting out. We both felt that she wanted DH off of his regular meds, increased his pain meds immediately and wanted everything done thru hospice. We wanted to keep Moffitt until this next round of chemo was completed and then see where he's at. I am certain that they have admitted him under end of life care. I live one county away from you and work closely with all Hospices in a large area of Florida. The reason she pushed for all in or all out is because as I said, his cancer treatment is no longer covered under any government benefit he is receiving, which I am assuming in his case is Medicare, from the moment he signed his contract with Hospice. She was trying to get you to understand that. Unfortunately it sounds as though she wasn't very patient with you. Did he also sign a DNR? Some chemos require you to not have a DNR, please double check that just in case. Again, please PM me or call your social worker at Hospice, NOT MOFFITT, and get it situated before he's turned away from Moffitt for payment or DNR issues. I say this as a nurse with lots of hospice experience and a SO that has terminal cancer. I know where you're sitting and it's very overwhelming for both of you. (((Hugs))) Thank you for this. Again, when we met with the gentleman who signed him up last night, he just said that it's our choice if we want hospice to become his primary care doctor OR do we want to stick with his current primary care doctor (we chose hospice). He said that DH would still be able to go to Moffitt. THIS IS CONFUSING. Had we known that his cancer treatment at Moffitt is no longer covered once he signs with hospice, we might have thought it over more...
DH never signed a DNR. We both didn't agree to one. I always said I'd fight to keep him here for as long as I could.
And, you are right!! Just today I received an email about outstanding bills from Moffitt that need to be taken care of. They are usually so wonderful to never bring it up. Sounds like they might be ready to turn him away from Moffitt.
This is all a lot to digest. I need a break from looking at the screen. I'll try to read all other comments as soon as I can. You've all been very helpful. Thank you!
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Post by christine58 on Sept 14, 2021 0:53:30 GMT
@bergdorfblonde. Please think about a DNR. I say this with lots of love. Do you really want him hooked up to machines to prolong his life because you want him here? Do you want to watch nurses etc continue to do CPR? We had this conversation with my dad. It was a hard one but ultimately it was HIS choice not ours. He signed one.
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Post by mom on Sept 14, 2021 1:09:57 GMT
My experience as my mothers caretaker with Hospice was good. They were very clear about what we could expect and what having Hospice come actually meant. Our hospice nurse stopped all of my moms meds that were not pain and comfort related. They made sure we knew we were not to go to the ER, Urgent Care, Drs office for appt, or seek outside medical help. My mom was being evaluated for a transplant and she quit those appt too. Hospice sent a nurse every couple of days and that eventually turned into everyday. The Hospice Dr came a few times to check on mom. I dont remember if a DNR was required but I know my mom had one as she was tired and she knew any life saving attempts would prolong our pain of losing her.
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Post by cade387 on Sept 14, 2021 1:13:50 GMT
I don’t have a lot of advice to offer but I am sending my thoughts out to you both. I think of you each day and continue to send positive vibes to you both.
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Post by Skellinton on Sept 14, 2021 1:22:04 GMT
@bergdorfblonde . Please think about a DNR. I say this with lots of love. Do you really want him hooked up to machines to prolong his life because you want him here? Do you want to watch nurses etc continue to do CPR? We had this conversation with my dad. It was a hard one but ultimately it was HIS choice not ours. He signed one. I agree. I also say this gently, that should be his decision. |
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Post by laurasw on Sept 14, 2021 1:36:22 GMT
I'm so sorry for what you are dealing with now. It must be extremely overwhelming and exhausting.
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Post by jamieson on Sept 14, 2021 1:37:58 GMT
In my state, hospice care means that you are not receiving chemo, or life-extending care in any way. I was surprised when you said your dh was still receiving chemo. I wish you the best and will keep you both in my thoughts and prayers.
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