Community Chat

[conlt]

It is very difficult for some physicians to "give up" on someone and I am sorry that this happened to you. It happens more than you know, people take treatments endlessly until they die. The doctors probably could not have told you or you mother first because of patient confidentiality.. Many people can't emotionally accept hospice. That is why I like palliative care, the person is kept comfortable and still able to take treatments. The palliative care team helps bring them to closure. I have a very dear friend right now, who is 43 and has been in the hospital for 3 months with end-stage liver failure and end-stage kidney failure. I went to see her in the ICU last weekend and it is just awful to watch what she is going through. She is on a ventilator, dialysis and multiple IV medications to keep her alive. She was offered hospice but refused and they had to put in a trach so she could breath. The trach is hooked to the vent. It is so awful and difficult to watch. Her family is devastated.They can't bring themselves to stop fighting. Actually this is quite normal. 

[mistriTsquirrel]

---

@Teddie wrote:

---

@mistriTsquirrel wrote:

---

@Kachina624 wrote:

It is the patients doctor, who is familiar with his medical condition, who makes the referral to hospice.  There is of course the expectation that the patients condition is terminal.  It's hard to imagine this man has been seen by a doctor and something wasn't done to address his condition.  He certainlyly should be seen in some facility ER now on an emergency basis.   He could be seen at the nearest ER, then transfered if necessary but do it now. 

---

@Kachina624

You'd be surprised.  My dad was suffering greatly, but was in such denial about his condition that we relied on his oncologists to make the call on when to involve hospice.  His primary oncologist made the decision to send his nurse practitioner over to the hospital early in the morning to tell my dad that hospice was his best option.  He neglected to inform my mother or I that he was going to do this.  So my mother got a call from my dad, crying, telling her that his doctors had given up on him.  The doctor waited until a week before my dad died to do this, and he didn't even bother to contact us so that one of us could be there with him when he was told.  I made my way to the hospital a.s.a.p., but we should've been given the option to be there with him when he was  told.  He was beside himself.  He still wanted to fight the cancer, even though the treatments were not working.  He felt betrayed by his doctors when they referred him to hospice.  That is why we as family members did not want to push for hospice, because we knew he would feel betrayed by whichever family member had brought it up.  We relied on his doctors to help us with that, and they didn't handle the situation correctly.

---

@mistriTsquirrel  That is disgusting and disgraceful how that was handled with your dad.  He and your family shouldn't have had to go through that. It made me sad to read that and I'm sorry for you all. 

---

Yeah, it was hard to go through, @Teddie...hardest for my poor father, I'm sure.  It still makes me angry to think about it.  That and what U of M did.  

We took my dad to the University of Michigan for a second opinion.  We were told that his case was unusual because of the fact that it seemed to have spread to his femur bone, and that's not a typical metastatic site for esophageal cancer.  It seemed like there was some doubt about whether or not there were actually malignant cells in that bone, because even though it looked malignant on the scans, they were never able to find malignancy in the samples they took.  So anyway, his case was to be reviewed before a "tumor board"...or so we were told.  We were told we would be called on a certain day, then found out his scans weren't sent there on time, so we would have to wait for them to be presented to the board of specialists.  We never got a call back and our calls were not returned.  It's like they decided he was a goner and just wrote him off with no call to us or even a letter.  That seems to be what a lot of these doctors do; once they decide you're a lost cause, it's like you aren't worth their time.  That's one of the reasons I'm so fearful of getting cancer.  Oncology seems to be all business, and these people don't treat their patients the way they would treat a loved one.  You have to advocate for your loved one every step of the way.  I have no children, and my sister and I don't speak anymore.  It's unlikely I'll have anyone around to advocate for me if/when I get cancer.  (Cancer is the most common cause of death among my relatives, so I feel like it's probably just a matter of time before it's my turn.)  I don't want to be alone going through something like that, but I fear I may have no choice.  

Emily, if you're reading this, just know that you being there for your husband is the best gift you could ever give him.  I've never been sorry for all of the time, effort, investigation, advocacy and care I put in when my dad was sick.  It was all worth it, and I'd like to think my dad felt loved and cared for while he was going through it.  We all pass away at some point, and if there is suffering involved, the most wonderful thing you can do for someone is be there when it is their turn.  Later, we will take our turn, and hopefully there will be others who will be there.  Then they will suffer in the way we suffered as caretakers.  Sometimes it's tempting to ask "why?", but the answer is that we each take our turn in some way.  All we can do is try to make the best of the situation and ride it out, hopefully with the support of family and friends.  Just know that your love and support are helping to carry him through this, and that he takes comfort in knowing you are there for him.  You're giving him the best gift you ever could.  

[Teddie]

@mistriTsquirrel  Once again, very difficult to read what you went through. It's agonizing enough as it is watching your dad suffer but then to deal with what else they put you all through is just inexcusable. I can't even find the adequate words. 

My dad died of gall bladder cancer. He was in a lot of pain and deteriated very quickly. I was shocked how cold some of the doctors were. There is a lot I could say about that experience. I am haunted by what my dad went through. 

I am sorry for anyone who has gone through or is going through this, either yourself or with a loved one. I hate that this kind of suffering is a part of this life. 

[mistriTsquirrel]

---

@conlt wrote:

It is very difficult for some physicians to "give up" on someone and I am sorry that this happened to you. It happens more than you know, people take treatments endlessly until they die. The doctors probably could not have told you or you mother first because of patient confidentiality.. Many people can't emotionally accept hospice. That is why I like palliative care, the person is kept comfortable and still able to take treatments. The palliative care team helps bring them to closure. I have a very dear friend right now, who is 43 and has been in the hospital for 3 months with end-stage liver failure and end-stage kidney failure. I went to see her in the ICU last weekend and it is just awful to watch what she is going through. She is on a ventilator, dialysis and multiple IV medications to keep her alive. She was offered hospice but refused and they had to put in a trach so she could breath. The trach is hooked to the vent. It is so awful and difficult to watch. Her family is devastated.They can't bring themselves to stop fighting. Actually this is quite normal. 

---

@conlt 

Not sure if this was meant for me, but my mother and I had my father's permission to be involved in his care, and the legal aspects of that had all been tended to.

As far as treatments are concerned, for my dad everything was complicated by the strokes he had towards the end.  He had to be on blood thinners, but then when procedures needed to be done, he had to go off of them and they had to administer potassium, and it took longer to prep him for procedures than anticipated.  When he was in his last month or so of life (before hospice came in) his treatment was dominated by attempts to prevent more strokes vs. doing procedures to drain fluid from around his lungs.  Chemo wasn't on the table anymore because these things had to be tended to.  And no one told us about any "palliative care team."  We had only heard of "palliative" care as the drugs we would be giving him to ease his suffering, whenever they were ordered by a doctor.  We didn't know there was a step in between cancer treatment and hospice.  I'd asked my mother to look into getting a nurse for him to stay during the nights, but she thought the out-of-pocket expense would be too much, and while I had permission to bypass confidentiality with his doctors, I didn't have the legal permission to find out how much his insurance would cover, or to put the process of getting a nurse in motion (only my mother could do that).  His doctors knew what was going on, because my mother and I both told them.  One time my mother called one of his oncologists at night, and the guy acted irritated that we had bothered him.  Another time I called because my dad's feet were swollen, and I was told that his last liver and kidney panels were normal and the doctor acted like it was no big deal.  During these calls we let the doctors know what was happening, and they did nothing.  He had oxygen at home, albuteral, and ativan and that was their version of "palliative care."  It wasn't enough, but telling the doctors what was going on was rarely any help...and we hadn't navigated this course before.  I thought palliative care was what we were giving him, and my mother didn't want to pay for a nurse, and I don't think she even looked into how much insurance would cover for one.  

So to anyone on this thread who is saying that getting someone to a hospital or doctor's office should be enough...you're right, it should.  But it isn't always enough.  In my experience, the doctors don't care enough to worry about someone they cannot save.

I am sorry, @conlt, to hear about your friend.  I know she is suffering, and that is awful.  However, I'm guessing you told her about palliative care, and it sounds like she was informed about what hospice offers.  She was at least given information and allowed to make a choice.  That didn't happen for my dad until 7 days before he died.  I realize that his doctors weren't eager to step on his hope, but when things got bad I feel like they could've at least brought up palliative care.  Not only that, but the hospital social worker came by his room twice when he was in the hospital.  I spoke to her about my mother threatening to put my dad in some sort of facility, and made sure that she had it on record that my father wanted to come home when it was possible, not be stuck in some sort of facility.  She spoke to him to get his assent while I was there, but she never bothered to tell us about any other options.  It's possible she stopped in when he was heavily drugged and talked to him about it, I suppose.  But we had it on record that we were his caretakers, and as a hospital social worker you'd think she would understand that talking to a man who is so sick and being medicated could be...less than productive.  

There were times when he was over-medicated, and I had to tell each nurse to ASK him first if he wanted the pain medication or the Ativan.  Most of the time he would say "no."  But if they didn't ask him first, he would just take whatever they gave him.  Then he would say he "felt weird" or was tired, and he didn't seem to know why.  When I was with him, I could often see that he was in some sort of discomfort, and I would have to ask him a list of questions to figure out what was wrong.  The nurses at the hospital don't have time for that, I guess, so they would give him medication he didn't really want and just move on to the next patient.  The whole thing was a mess, and it was a constant struggle to make sure his needs were being met.  I wish the doctors, nurses and social worker had been more helpful, but that wasn't what happened in our case.

[mistriTsquirrel]

---

@Teddie wrote:

@mistriTsquirrel  Once again, very difficult to read what you went through. It's agonizing enough as it is watching your dad suffer but then to deal with what else they put you all through is just inexcusable. I can't even find the adequate words. 

My dad died of gall bladder cancer. He was in a lot of pain and deteriated very quickly. I was shocked how cold some of the doctors were. There is a lot I could say about that experience. I am haunted by what my dad went through. 

I am sorry for anyone who has gone through or is going through this, either yourself or with a loved one. I hate that this kind of suffering is a part of this life. 

---

@Teddie  I agree with and can relate to everything you said.  I'm sorry you've had to go through this too, and for anyone else who has gone through this, who is going through this or who will go through this.  It's heartbreaking, and your statement that you are haunted by what your dad went through is exactly how I would describe things. 

[mistriTsquirrel]

---

@goldensrbest wrote:

---

@mistriTsquirrel wrote:

---

@Kachina624 wrote:

It is the patients doctor, who is familiar with his medical condition, who makes the referral to hospice.  There is of course the expectation that the patients condition is terminal.  It's hard to imagine this man has been seen by a doctor and something wasn't done to address his condition.  He certainlyly should be seen in some facility ER now on an emergency basis.   He could be seen at the nearest ER, then transfered if necessary but do it now. 

---

@Kachina624

You'd be surprised.  My dad was suffering greatly, but was in such denial about his condition that we relied on his oncologists to make the call on when to involve hospice.  His primary oncologist made the decision to send his nurse practitioner over to the hospital early in the morning to tell my dad that hospice was his best option.  He neglected to inform my mother or I that he was going to do this.  So my mother got a call from my dad, crying, telling her that his doctors had given up on him.  The doctor waited until a week before my dad died to do this, and he didn't even bother to contact us so that one of us could be there with him when he was told.  I made my way to the hospital a.s.a.p., but we should've been given the option to be there with him when he was  told.  He was beside himself.  He still wanted to fight the cancer, even though the treatments were not working.  He felt betrayed by his doctors when they referred him to hospice.  That is why we as family members did not want to push for hospice, because we knew he would feel betrayed by whichever family member had brought it up.  We relied on his doctors to help us with that, and they didn't handle the situation correctly.

---

My husband ,just did not want to admit he was dying, i found this very hard to understand, he was at the facility one day ,they tried to have him walk with help just a small  length, day two,and three he could walk to his bathroom by day 5 he was in the bed all the time, it took about 5 weeks before he died, it was just terrible, he literally starved too death,he could not eat anything for 12 days.

---

@goldensrbest  It is very hard to watch.  My understanding is that the patient naturally loses their appetite, then their ability to swallow as the body starts shutting down.  As it was explained to me, the body can no longer process the food and water coming in, so it will only accumulate in the body and not provide any actual nourishment.  Swabbing my dad's mouth a lot helped him with the discomfort of having a dry mouth, but I'm sure it was still extremely unpleasant for him to not be able to drink a glass of water.

I'm sorry you've had to go through this with your husband.  It's torturous to have to watch a loved one suffer so much.  I remember praying that my dad's suffering would just end already.  

On the morning he died I was lying on a cot in his hospice room.  I was listening to his irregular breathing as I started to fall asleep.  Then the thought occurred to me that he was probably thinking this was all just a very bad dream...  

[viva923]

i am so sorry to hear of this huge set back.

please call social service at hospital or chaplains office and they should give you to cancer care specialist team who can lead you thru this most trying nerve racking time. Nothing can ease you pain but letting your husband be in comfort.

that was who i contacted when my dd had the diagnosis of cancer last year may-june and she was kicked to the curb and left to fend for herself on what to do next.  I contacted the chaplains office at the hospital and within 10 minutes the cancer laision called me back and got the ball rolling and she finally had surg. After a 3 month floudering in water wait.

it is just finding that crack in the correct door that will begin the ball rolling into the correct care you husband needs.

Please know I am thinking of you and hoping the best for you and your family.

[fuzzball76]

My condolences. Talk to a social worker rigtt away as othets have suggested. Wating till the 24th to go through all the red tape is not benefical. If he is a veteran, talk to someone at the VA too. Too much red tape with health care no matter who is in charge. Get ahold of your local Red Crioss or American Cancer Society too. Lord knows they are always wanting to people to donate and say they always help when needed, so why not your family. Blessings!

[hyacinth003]

---

@goldensrbest wrote:

---

@hyacinth003 wrote:

---

@goldensrbest wrote:

---

@mistriTsquirrel wrote:

---

@Kachina624 wrote:

It is the patients doctor, who is familiar with his medical condition, who makes the referral to hospice.  There is of course the expectation that the patients condition is terminal.  It's hard to imagine this man has been seen by a doctor and something wasn't done to address his condition.  He certainlyly should be seen in some facility ER now on an emergency basis.   He could be seen at the nearest ER, then transfered if necessary but do it now. 

---

@Kachina624

You'd be surprised.  My dad was suffering greatly, but was in such denial about his condition that we relied on his oncologists to make the call on when to involve hospice.  His primary oncologist made the decision to send his nurse practitioner over to the hospital early in the morning to tell my dad that hospice was his best option.  He neglected to inform my mother or I that he was going to do this.  So my mother got a call from my dad, crying, telling her that his doctors had given up on him.  The doctor waited until a week before my dad died to do this, and he didn't even bother to contact us so that one of us could be there with him when he was told.  I made my way to the hospital a.s.a.p., but we should've been given the option to be there with him when he was  told.  He was beside himself.  He still wanted to fight the cancer, even though the treatments were not working.  He felt betrayed by his doctors when they referred him to hospice.  That is why we as family members did not want to push for hospice, because we knew he would feel betrayed by whichever family member had brought it up.  We relied on his doctors to help us with that, and they didn't handle the situation correctly.

---

My husband ,just did not want to admit he was dying, i found this very hard to understand, he was at the facility one day ,they tried to have him walk with help just a small  length, day two,and three he could walk to his bathroom by day 5 he was in the bed all the time, it took about 5 weeks before he died, it was just terrible, he literally starved too death,he could not eat anything for 12 days.

---

I am sorry you had to go through this. 

The body turns off it's appetite and desire for food as part of the dying process.  It is often hard for us human beings to accept that someone won't eat.  Pushing it on someone can lead to more distress than letting their body do what is natural at the time.  He really didn't starve to death in the way we may think.  It was all part of the process.  You can try to prolong the process with IV's and feeding tubes, but it is only prolonging the inevitable.  Few patients want it, but sometimes their families do. 

I have seen patients with incredible denial going on.  It can occur in family members also.  My personal view as an RN working with them was to listen to them and act accordingly.  Address what is important to them - like pain control, for example.  My personal opinion is that not everyone needs to be shaken to reality to meet our needs for it.  I felt tell them that they are so loved and address the iminent physical situations so they are comfortable.

Hyacinth

---

He was so thin,the bones in his back were sticking out, he really looked like the people in the concertration camps.

---

I am so sorry you had to experience this.  It must have been awful for you.

Hyacinth

[Ditzydori]

• KATHYPET, boy you do have a lot of questions. I'm sorry I wasn't clear. I'll try to spell it out to you. 

3 years ago my husband was diagnosed with melanoma. We lived in NY and Sloan Kettering is a renowned cancer center where people go from all over to be helped. He has been going there for all of the 3 years. So last year we moved to Pennsylvania but continued to go to NYC. Not an easy feat but we thought it was worth it because SK has a fantastic reputation. 

So so fast forward to November of 2016. Hubby received 5 rounds of radiation to his lung (melanoma metastasis). He got the ok to go to Florida (were snowbirds), so December we went to Florida. Hubby was ok. SK Dr gave us the info of a dr in Miami that would continue his care. Around February, hubby got this debilitating fatigue, and bump in his neck (original melanoma was on his jaw bone, a beauty mark he had all his life that turned). The melanoma came back for the 4th time. He had radiation and the immunotherapy was changed. The Miami dr was IMO just as good as SK. 

So we waited for the round of treatments to be completed and for hubby to be scanned. Results weren't good. The cancer continues to spread. 

I DID MAKE AN APPOINTMENT WITH SK FOR THE 24th of May. But I wanted the records from Miami to be sent to SK. I have the disc and the report from the PET scan but I just wanted the rest forwarded to SK. 

When i I arrived back north last Wednesday I immediately called the SK dr to let them know hubby wasn't doing too well. Hubby has been eating soft food for a while now and has been vomiting from time to time also while we were in florida. I told the Miami doctor this. His response was it will get better before it gets worse. He gave him anti nausea meds, and said the immunotherapy should work that it could take time. 

When his siblings saw him when we arrived back north they said he maybe needs in home care, and I agree, he needs something. The palliative care that was mentioned on here seems like,a good,fit now. 

I called the pallitive care in my area and they are going to call tomorrow to set up an evaluation. Hubby needs help, but I like,the idea of the pallitive care because it allows the patient to continue to receive treatments. 

I am so,thankful to,the ladies who told me about it. I had no idea and that is why I cameos here to get more info. And I did receive that. Thanks to the nurses who replied. 

when hubby heard SK wanted him to go to urgent care, he immediately said he didn't want to go. 

His is best friend came over today and sat with him. We had a good,day. My children were here and my hubby looked at peace today. It was a good day. 

I will,pursue the pallitive care. I will not rush him to urgent care or the emergency room at this time. He's been to hell and back,with this horrible disease. He's resting peacefully now. I have. ALOT of support now,that I'm back north.  Hubby ate his,usual soft food today and kept it down. I'm grateful for that. One day at a time. 

Tomorrow starts a new new day and I will continue to be by his side and do everything I can do to take,care of him. 

His is best friend or my son will drive us to SK on the 24th. In the meantime, I will pursue the pallitive care route and see what they recommend. 

It's all in Gods hands.

thanks so much for telling me about the pallitive care, because without you ladies I would not have know. You are all Gems!!!  ❤️❤️❤️