Snoopyfn Posted June 1, 2007 Share Posted June 1, 2007 sorry...lots of background first... I am caring for my husband...he currently has a palliative care nurse that comes by 1-2 times a week...he is on no treatments and it is unlikely he will be on any....we just got oxygen yesterday..he finally qualified...he tested at 85% so that is a mixed blessing if you know what I mean it has seemed that everytime he seems to maybe have enough strength to try chemo he has bad days... and even his good days most would consider bad...he can walk to the bathroom and kitchen but only gets up from the couch to do those...other than that, if he is up too long he gets sick, nauseous etc.... Currently his pain is manageable but it is increasing... he currently is on fentanyl patches...I put 2- 75's on him today b/c his 100's werent totally cutting it... he also takes norco and oral morphine drops for breakthrough.... the past week he has been getting increasingly more short of breath... we have always known of a tumor that is threatening his main airway...his only treatment was radiation of that tumor...he did about 8 treatments...they ended about a month ago... I am concerned that it is looking apparent that this is how he is going to go...this is the LAST thing I wanted for him...I am realistic and know he is dying but I didnt want it to be of suffocation...the dr told us when this started back in March that if it were to come to this then they would do everything possible to make sure he doesnt suffer...this would mean to highly sedate/medicate him etc etc... We arent at that point yet but feel it is going there... I wanted an xray to see if it is fluid or tumor but the dr wont sign off on it happening here and said we should go to ER! this is ridiculous..it is not an emergency YET... cant they see that we are trying to be proactive?? No wonder the ER's are so screwed up... three times now we have had a situation that wasnt immediately life threatening and we have tried to go by other means and the Drs left us no choice but to go to ER... one time by ambulance....it is just stupid if you ask me... ANYWAY...the Home Care people, his Dr and his family have all be somewhat pushing for hospice... I dont think he is ready "mentally" for that...I dont know if I am ready "mentally" for it... Palliative has been good so far...she comes 1-2 a week and is there if we need something... his pain is undercontrol right now and he has some..albeit little..mobility... As soon as hospice comes...any semblance of normalcy will be gone... I have read some of the threads regarding hospice and frankly it scares me! plus we are not ready for that kind of intrusion in our home yet....all hospices are different BUT... he likes the palliative Nurse and would hate to rock the boat right now... I dont know how close or far away he is to "passing" but I just dont feel ready for this change... I need some perspective though...how many of you have felt pressure for hospice and what did you do? Am I being realistic here about it? His sister is mking me feel I am doing both of us a disservice by not caling them in yet... he is not greatly suffering...I think it would be a bigger blow to him to have them here.... things are being controlled currently and the palliative care can be switched to hospice rather quickly I have been told...they offer both...they said it is just a phone call... I personally wish I didnt have all this extra pressure right now.... Quote Link to comment Share on other sites More sharing options...
fillise Posted June 1, 2007 Share Posted June 1, 2007 Snoopy, I can't speak to whether it is time for Hospice. I think you will be the best judge of that, but I did want you to know that I will keep you and your husband in my thoughts and prayers. I'm sure some others who have been through this will have more practical wisdom, but I wanted you to know that I'm thinking of you. Susan Quote Link to comment Share on other sites More sharing options...
beat it Posted June 1, 2007 Share Posted June 1, 2007 Hi, I'm sorry your in this situation. But I'm glad your posting here. It is a great family of compassion and insights. Not all agree all the time but it sure does make a difference in my opinion. As far as Hospice goes, we are not currently there....yet. My MIL has Stage 4 NSCLC and we are progressing. With everything, cancer growth, med increases, pain, fatigue, loss of appitite....... I'm sorry. But I have researched hospice and I cant tell you what I want to see happen for us. To me Hospice is NOT a death sentence, it doesnt mean defeat or lack of strengh to carry out the role care givers play. To me Hospice is there to HELP, to ease some of the caregivers stress, releave as much pain as possible for all involed. You know it seems it all depends on a families outlook on the meaning of Hospice. If you equate Hospice to death I can see why it would be tough to incorporate them into your situation. If you equate Hospice as help, guidence, support and quicker pain management it would be more exceptable to bring them in. I hope you will find your peace in this vicious rollercoaster that cancer has us all on. Best to you and yours, Beat it. Quote Link to comment Share on other sites More sharing options...
RandyW Posted June 2, 2007 Share Posted June 2, 2007 I never had to use hospice as Deb passed in hospital after emergency admission. If you get a chance cliick on search and type in Hospice. We have had some very insightfull articles written on this subject. And I can give you a link which may help you out with this.I know it is overwheklming and scary but it does not need to be that way http://www.nhpco.org/templates/1/homepage.cfm click on link to be redirected. Sending Prayers for everyone right now and always. Quote Link to comment Share on other sites More sharing options...
missyk Posted June 2, 2007 Share Posted June 2, 2007 I'm so sorry that you're feeling pressured!! That's got to be a terrible feeling on top of everything else you and your husband are going through. I will tell you that our experience with hospice was exceedingly wonderful. When hospice first came into Mom's home she only needed the nurse once a week and an aide came in once a week. The nurse checked her over, checked to make sure meds were doing what they should, and generally just visited for a while. The aide Mom loved to have come in even though she didn't need much care at that point. She would get foot rubs and shoulder massages, mainly. At one point I even joked that it had to be the reason she had hospice in...so someone would rub her feet. As she needed more care, they provided it...but not until then. Like you said, each service is different (even in one area of a state, let alone all over the country) and only you and your husband know when is "right" to begin to use their services. Don't let anyone pressure you into something you're not ready for! And, just as an aside...I totally agree that it stinks that the dr.s seem to always send them to the ER for things that could be taken care of in the office. Mom sat in the ER waiting room for 4 hours one evening...to be told to take some Robitussin for her breathing issues. *Sighs* I feel ya on that one completely! Many prayers coming! Quote Link to comment Share on other sites More sharing options...
Nova Posted June 2, 2007 Share Posted June 2, 2007 I haven't had to go thru this, so I don't really know what to say, other then I'm saying a prayer for you. I have mixed feelings about Hospice. Maybe if you just go with what your heart is telling you, that would be best. That's what I plan to do, if and when the time arrives that I'm in your position.. Thinking of you, Nova Quote Link to comment Share on other sites More sharing options...
myagle2 Posted June 2, 2007 Share Posted June 2, 2007 First off, Iam sorry you are where you are. My thoughts are with you. My husband took a bad turn in April/May, and I started with home care nurses twice a week. EVERYBODY including his doctor, said it was time for hospice. I said no, he said no, but as the days went by, we finally had to relent. I am so glad we did. They were wonderful, came three times a week, more near the end. I have never met a more caring bunch of people. That was my experience, and I wish I would have called earlier. I resisted, because I felt I would be losing control. I did not, and he made very nice friends in the end. At this point, we were done with hospitals, and ers, they are just rediculous, and 4/5 hours being treated was too hard on him. I wishyou luck, research your hospice, think about it, and good luck. Mary Quote Link to comment Share on other sites More sharing options...
Flowergirlie Posted June 3, 2007 Share Posted June 3, 2007 I PM'd you earlier before I realized you had posted. You were on my mind and it may have come across inappropriate, I hope not and sorry if so. Anyway, I really wish in our experience we had called hospice earlier, personally. The doctor will not recommend hospice until they believe the life expectancy to be less than 6 months. Hospice can help to the degree you want and need...no more and no less. Hospice can be a positive thing because with no longer needing to go to the office for treatments, your medicine can be delivered to your home, if you need equipment in your home, they will deliver it to you, if you have an emergency any time, they will be there. I think some people think that a hospice team moves in with you and takes over the house and anxiously awaits ones demise but it was not that experience for us. In fact, one of the nurses was so kind and informative that she explained things that were happening indicating what part of the final process we were at and it was helpful to me in order to help him. He felt comforted knowing that what was happening was normal and I would have never known otherwise and it allowed us to be more peaceful and comforted. Well, I am sad that you are feeling pressure to make a decision right now, not like you don't have plenty on your plate, and I am sorry for that. We would have had hospice earlier if we would have stuck to our decision and listened to ourselves instead of the doctors, nurses and other medical circus performers. My thoughts are with you, hubby and family during this most difficult time. Hugs...Flowergirlie Quote Link to comment Share on other sites More sharing options...
kamataca Posted June 3, 2007 Share Posted June 3, 2007 We met with a couple of different hospice organizations, and ended up going with one different from the one the hospital recommended(of course, the recommended the one that wass associated with them.) Remember that you have lots of options with hospice---pick what works best for you, and which group 'feels right'. Our hospice let us call all the shots, and we didn't use as many of their services as they offered. My brothers and I had always taken care of Mom, and we kept it that way to the end, with some of their help. Hospice was a great help to us. Mostly they helped us with the paradigm shift of what was happening in our lives, and how care shifts from curative to pallaitive. We were worried about the amount of meds mom needed, and they guided us through that. I don't know if you guys are there yet, but hospice can be a wonderful thing. Mom wanted it at that point, and it really helped us. You have options. You guys are in my prayers. Kelly Quote Link to comment Share on other sites More sharing options...
Nick C Posted June 4, 2007 Share Posted June 4, 2007 Our thought was to talk hospice well before it was needed, so when it was it wasn't a crisis or a scramble. Turns out we never needed it, but Mom felt a lot of comfort knowing we would have hospice on "standby" should she get to that point. Sorry you're here, wishing you the best. Quote Link to comment Share on other sites More sharing options...
janehill Posted June 4, 2007 Share Posted June 4, 2007 Ouch! This is rough, I totally understand. Hearing the word "hospice," I think, can completely floor you and I don't imagine anyone is ever really ready to hear the doctor suggest it. I think, ultimately, what made our decision was that mom wasn't receiving treatment anymore and we thought, heck, if she's not receiving treatment - why don't we engage hospice so we at least know she is getting the most amount of home care possible. But this is such a personal decision and if this would crush your husband, it's NOT worth it. He might actually be the best person to decide for himself when it's time. All the best. Quote Link to comment Share on other sites More sharing options...
Snoopyfn Posted June 5, 2007 Author Share Posted June 5, 2007 thank you to all who responded... so much has happened/changed in the past couple of days.... I feel we got the O2 just in time as now he is needing to be on it constantly... this is quite a change from just a few days ago when he just got short of breath when exerting him self and only 1-2 times when he hadnt done anything... I ordered the oxygen as precautionary on Thur and here it is monday and he is now dependant on it.... I am quite scared... I finally got the dr to agree to write a rx for chest xray for the imaging center so we could go down, have the xray and go home to wait for results...they wanted us to go to ER! Which we did not want to do... if it isnt fluid...there may not be alot that can be done and we didnt want him being stuck at the hospital and not be able to come home! frankly it is bothersome when the dr seem to want you to go to ER for everything...and it is no wonder there is a problem... today all we wanted was a chest xray... the first time we had to go to ER the bill to insurance was over $9000! are they expecting to bill that just for us to get an xray? that costs $100??!!!! I told them I thought that was assinine! We do not want to abuse the system... anyway...we had it done... but he is getting more and more short of breath... today he had blood in his phlegm..not a good sign... he coughed and not only got light-headed but to me it seemed like he had a mini seizure... his arm/hand kind of shook for a few seconds and he had kind of slumped over momentariy.... earlier he had numbness in his fingers/hand... all not good signs... waiting on results from xray... if it is fluid, we will go to ER to have it drained...but at least THEN we would know WHY we are going!! if it is not flud then we will have to call home health and have him switched over to hospice b/f he gets even worse... it is scary right now.... thank you all again for your responses and well wishes.... Quote Link to comment Share on other sites More sharing options...
fillise Posted June 5, 2007 Share Posted June 5, 2007 Snoopy--I'm praying for peace for you and your husband during this scary time. I hope the x-ray will show something you can treat. Whatever you learn, pleas remember that we will be here for you. Susan Quote Link to comment Share on other sites More sharing options...
missyk Posted June 5, 2007 Share Posted June 5, 2007 Sending prayers...and wishing there was more I could do to help. Quote Link to comment Share on other sites More sharing options...
Snoopyfn Posted June 5, 2007 Author Share Posted June 5, 2007 thank you.. I am extremely frustrated today with the waiting... the home nurse called the dr this morning to try and get results from the xray... she was told a nurse practitioner would look at them and call back...of course we still havent heard anything then my husband decided he wants to try and do what he can to treat this... if it is fluid then have it drained...if not..he wants to see if any treatemnt can be done and possibly see about doing chemo... he hasnt done any to this point...I think the breathing difficulties have pushed him into action... it has to be the scariest of all symptoms... at least I would think so...anyway he told the nurse this and she was trying to get us an appt tomorrow...she was here onhold for quite a while then she left while still being on hold and said she would call...but still nothing.... it just irritates me the attitudes sometimes...I just wonder how they would feel if they hadnt been able to breathe very well for a few days and the possible answer was available already and no one was doing anything.....you know? if it is fluid...we could have had it tapped by now....but we are waiting and waiting and waiting.... luckily I think he is feeling a bit better today... still on o2 contantly but.....not so much blood in phlegm....coughing is a bit less... just would like an answer.... Quote Link to comment Share on other sites More sharing options...
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