My father was diagnosed 12/18 with stage 4 squamous cell. He had double bypass at the end of April. He had a mandiblectomy 6/13. He was to have radiation and chemo after the mandiblectomy. He was released 6/25 from the hospital after the mandiblectomy and was readmitted 6/27 with severe infections. He hasn't left the hospital since. He was to start radiation this past Monday. I just spoke to a doctor because my father doesn't want to do this anymore. He says he is tired and needs a break. I get it. I do. It's got to be very scary, frustrating, exhausting, etc. No matter what I want, it's not my choice to make for him. Only he can decide when he has had enough. The doctor said that the cancer is so bad they don't think the radiation will do any good. My father is supposed to come home tomorrow. How have you dealt with a loved one at the end? If you were that loved one, what would you want people to do for you? My father is very angry and depressed. He is snappy. I try to stay calm but eventually there is only so much you can take before you snap at the person you are trying to help. I wish I knew how much time he has until his suffering ends. It's so hard to see him like this.

Keleigh, I am so sorry you and your father are going through this difficult time. I would suggest getting in touch with hospice. They are trained to help with end of life issues for both if you and can provide lots of resources to help both of you.

The anger is understandable for both of you. This is intense stuff. Hang in there and contact the doctor's office. They can help with setting up hospice care. Your father may change his mind once the infection clears up. I can't imagine being in the hospital that long.

I am so sorry to read your post. This must be so terribly difficult for your father, you and anyone else who is close. Being hospitalized for such a long period of time is not easy. I stayed for 2 months after my mandibulectomy.

If you are authorized to speak to his doctor they may have some idea of how long he has. It could be nothing more than an educated guess but it might be helpful. Also check into hospice and a therapist. There are specialists that can help you both.

Best wishes to you both. We are here for you too.

Yes do get in touch with Hospice. They are unbelievable.

Keleigh your father is in a very dark place right now and my eyes well up thinking about it. My only experience with palliative care was on the other side of a hospital curtain, when the team came around to speak to my neighbour and his wife. They were amazing. When others don't know what to say, they do.

I hope your father and your family find the support you need. You'll be in my prayers.

I am so sorry you are going through this. My question is why the heck did they wait so long to operate and radiate? I get that he needed a bypass - but 6 months??? That's crazy long no wonder his cancer is running wild. Hugs I don't envy you this. My dad gave up too after having a stroke then a broken hip. I totally understand what you are going through.

I also wonder why the doctors would agree on Chemoradiation if they thought the cancer was so bad, radiation would not do any good, which together is really curative treatment, not palliative? Also, I was in a somewhat similar situation, had similar thoughts, whereby after a devastating 5 days of only induction chemo, all my treatments were stopped such as the rest of the 2 induction chemo's, and the Chemoradiation that was to to follow, not by choice from me or really by the doctors, but saving my life was a priority instead, and cancer became secondary even at stage 4. I wasn't able to do any further treatment until a year later, which probably impacted my recurrences.

Maybe your father does need a break, not too long, to collect his thoughts and strength to fight this disease. Maybe a 2nd opinion to help. As your signature says, .."As long as we have hope, tomorrow awaits."

Good luck with everything, and with any decisions made.

Update: He is still in the hospital. They will not allow him to leave, fearing his safety. If he lives with me or my brother there will be periods where he will be left alone. He is unable to even stand. When he does, he seems to pass out. I think I found a nursing facility. I hope to find out today. I have asked the rad doctor to do another scan to see if the cancer has come back because my father has severe headaches again, which the doctor told me could be an indication that it's back. He hasn't done the scan yet and I don't know if he actually will.

Cheryld: I have the same question: 6 months? He was diagnosed in December and at that time was told he needed the mandiblectomy, rad, and chemo. He didn't even have a cardiac cautherization until mid April. I don't know if the doctors just let him fall between the cracks or if he did not want treatment and just wouldn't tell us. I do plan to ask though because I have medical POA.

Keleigh, another option is home healthcare. They may be able to provide assistance for those times he has to be left alone.

It almost sounds like he told the doctors no and they can't tell you because no release is on file. Do you and your brothers have the required paperwork to be able to get information and discuss the care with the doctors?

Okay seriously you need some new drs. Your dad is unable to advocate for himself. With a medical POA you have every right to sit down with the drs. How heck can they even determine what's going on with him without even knowing his status with regards to the cancer? This is guess work and borders on negligence - in order to make a decision and even an adequate diagnosis - you need to know this information before making any decisions. If the cancer is small or localized then he should have rads as it can be curative.

If he's not at a CCC - he needs to be moved to one (likely an up hill battle - but a necessary one.) if he is adamant about wanting to die that's one thing, but he needs to have all the info first - because scary thoughts are part and parcel of the diagnosis and can play marvelous head games with a patient.

Push push push - you need answers. The wait was far too long. Chances are he did fall between the cracks and older people tend to revere their drs. And take their word without question. IMHO most drs are amazing and while you are with them they have your best outcome at heart but they are also human and make mistakes - forget things. No one can advocate for a patient like a family member or loved one. Hugs best of luck.

Update: He is now in a nursing home, got there this past Thursday 8/28. He is already asking to leave. Nothing pleases him. He is not happy at home, in the hospital, at a nursing facility. The problem with in-home care is they are only allowed a maximum of 35 hours a week. My father lives 7 hours away from me with my brother, when not in a facility. My brother works 60 hours a week. My father cannot come with me because he hates my husband and unfortunately, I am not willing to allow my children to see their father mistreated because my father wants to be an a** for no reason other than he can. I have told my father that to come live with me all he has to do is talk to my husband on the phone and be willing to treat him like a normal person since my husband will be required to help with his care. My father said he "has to think about it" and never brought it up again.

My father cannot stand on his own. He passes out when he does. He cannot walk. He is not urinating because his prostate is enlarged for some reason. He has now been throwing up constantly for the last 2 days. He is requesting to go back to the hospital when he just left there 5 days ago.

My brother and I do have medical POA. I do not know what to do though. I don't know who to call and what questions to ask. I am the one doing all the work from my home computer and through phone calls. Any help on who to call and what to ask would be a great help. I really want to know why it took them so long to start treatment and I'm not sure how to find out if my father put it off or if they were just negligent. I don't know why they haven't done a new scan to see if the cancer came back. I don't know why they sent him home with an infection, only for him to come back 18 hours later and blame it on him and my brother. I just don't know what to ask. So, a list would be wonderful. I am so grateful to have found this site because you all have been so helpful during this time of need.

Since your father is in a nursing home, he is being watched and cared for. There should be someone there you can speak to about his health, including his mental health. If he is very ill they should automatically transfer his to the hospital. Since you have POA, you should be speaking directly with his physicians instead of getting info only from your father.

It sounds to me like he would greatly benefit from some therapy. Im sure he must feel very isolated and alone and of course, very afraid. Ask at the nursing home if they have a counselor on staff that he can talk with.

Best wishes with everything!


PS... Please add a brief health history of your father in the signature section. Its very hard to answer questions without knowing the history. Im sorry but I dont have enough time to review all the posts to figure out exactly what he has already been thru.

K,

Your father has been through a LOT, a lot for anyone of any age. Since you need solid and practical advice and he is in a nursing facility as he can no longer take care of himself, you may find answers and support from hospice service.

It may seem quite depressing when this service is brought but the word has a HUGE stigma and everyone instantly thinks the worst. In fact, hospice is a good resource during times such as yours. They are helpful even if your father does not qualify for services as they work with families such as yours all the time.

Since they are familiar with your situation they may have suggestions to help you navigate these next turns in the road.

With respect to who to contact. With the POA, you can access his records and interact with his doctors and staff. First, make a list of the doctors he has seen and for what and who his current doctors are and what they do. Make sure to include the support functions too such as the lab and their number, the imaging center, etc.

Since he is in a nursing facility now, he has to have a doctor "of record", someone who is his primary contact. Get that name and number and start calling and finding out what they know and offer to your father.

I have a hunch the assigned doctor may not be the one you need to speak to the most. In other words, the radiologist or oncologist or ENT who treated him are the ones with the most detailed account to help you going forward. He probably has been assigned off to "regular" primary physician or one who works with the nursing facility to care for the patients there.

You have a lot on your plate so it is important to get focused and have a plan. It's good to hear you are getting your arms around such a complicated and stressful situation. Good luck, don

Best of luck to you and your family. I am glad to hear that he is getting further treatments, which means you still have hope! My father-in-law died of tongue cancer about 10 years ago. My mother-in-law is an RN and was able to care for him at home with the help of hospice and family. We focused on quality of life for him, making him as comfortable as possible in the end. It wasn't easy for us, but we just let him work through all of the emotions he had. If he had a bad day and wanted to gripe and snap we let him. If he was happy we helped him be happy. Just your being there helps so much. We spent many many hours just sitting quietly with him. If he continues to stay depressed then I would suggest talking with your doctors to see what you can do for him. Best wishes and hugs!