this is going to be long but will try to shorten the best I can, my husband is an only child, his father is like a father to me, but has been a functioning alcoholic for 40 yrs....my husbands mom left his dad due to it after 19 yrs of marriage when my husband was 13....my FIL never got over it and the drinking got worse.....he was never a "mean" alcoholic but it def controlled his life..a few yrs ago he got caught drinking at work and they told him to go to rehab or he was fired...he went for 45 days to a facility and of course, he was the only "normal" one there....he claims it did more harm than good, and he did not have a problem....so he lives alone and is retired and 58...and drinks all day to be "normal"...we are very close to him as we are all he has...we have 4 kids whom he adores....last summer there was warning signs with his mouth swelling and he would tell him to go see a dr, but he said he was fine and prob a "allergic reaction"..I would say YOU COULD HAVE CANCER OR something! and he would joke "i prob do!" I cannot tell you how many times we tried to get him to drs, but you cannot help someone who will not help themselves.....so anyhow last yr around XMAS he was obviously depressed and not coming around as much...we would try and get him to come over for dinner, etc...but he always had an excuse..(looking back we now know he did not feel good)...finally after about a week of not seeing him my husband went to his house to visit him and his mouth was clearly flared and like a fat lip and he could hardly talk his mouth was so swollen....my husband demanded he go to ER now!!! but of course he said it was prob nothing and something he "ATE".....we begged all weekend and finally on MONDAY morning I took him to ER, he was clearly drunk and in IMMENSE pain, they opened his mouth and was SHOCKEd by how swollen his tongue was and the white pusy scales running down the side...also the smell was horrible..they gave him meds to relax and right away ER dr suspected cancer.....in the few weeks before XMAS he lost TONS of weight we could tell too...and this confirmed he was not eating but just drinking...he went from 150 to 135 that first day, which he is already way too thin....they admitted him into the hospital and he spent 4 days there.....he got biopsys and lots of IVS and pain meds, they of course knew he was a alchoholic and would go thru withdraw so they kept a close eye on him....he then went home to wait on the results...I went w him to see ENT for those initial results and the ENT told him not good stage 4 squamous cell carcinoma....that the tumor on his tongue was growing for many yrs and it was into his lymph nodes as well......he told us about the big surgery a few hrs away for neck dissection etc....but he said he did not think he would ever live thru the procedure since he was already to sick and weak, however we shopudl still go talk to them....so they made the appt for 2 weeks away...we then saw radiation dr and encologist a week later....and in that time FIL lost TONS of weight because he obviously could not eat due to the pain in his mouth...the encologist (who is the best in the area but very cocky and "not nice" recommended a feeding tube before treatments could start and we agreed and told them to speed it up because he was blowing away...so the PEG tube was to be inserted at outpatient and I took him to that and he almost died getting the tube in because he went into shock, he was so dehyrated and weak, they admitted him again for 2 weeks that time to try and let him recover....at this time he weighed 114 and it was horrible because he had TONS of mucus from the tumor in his mouth and was clearly still drinking even tho dr told him if he continued it would kill him quickly...he started to look much better in the hospital and clearly was not drinking...at this point 6 weeks had passed since his diagnosis and still we did not know what the plan was because he was so bad, when he was being released from the hosp, he understood NO WAY he could care for himself at home and start treatments so he willingly went to a skilled nursing home, about a month later he almost died as a new tumor swelled and cut off his air supply, ENT performed bedside TRACH, so back to hospital in ICU for 4 days....and no treatment for time being to let him rest, then he was back to nursing home... the dr was very vague but told him basically it was inoperable and too far gone and to not bother going to see about the surgery becaue he would never make it thru a 12 hr operation, FIL agreed....dr said instead aggressively treat for "quality of life" to shrink the tumors, so he started chemo in the hospital and did well w that....few weeks later they started adding radiation..he received 39 rads and finished that today.....and basically that is all we know...he left the nursing home 1 week ago because his insurancw would not pay anymore....tho he was happy to come home as well.....nurses come everyday and we stop everyday, but w 4 small kids and one baby it is hard.......the tumor in his mouth it seems has never shrunk, his lymph nodes appear better but dr does not tell us anything!!! just that he is looking better and I am afraid giving FIL false hope...I do not think FIL understands pallative care, I am just really frustrated and sad...he looks HORRIBLE and now his bottom part of face is swollen and bright red (they say from the rads?) and I just do not know what to say to him or my husband....we stop everyday to check on him but I HATE seeing him like this....esp since he still asks for a little beer...I stress to him how that would kill him quicker.....I jus tthink these rads are doing more harm then good and I know as long as dr says come back, FIL will keep doing it...when in the end is it helping?? another thing is we JUST found out that a PET scan in MARCH showed mestatis to the lung....no one told us this or my FIL nor the nursing home!!...he has a dr appt thurs and my husband and I are going, but hoping the dr talks and gives us some answers, because even tho FIL cannot talk and uses a board he will not ask questions and just does what he is told........it is just so unique because he is alcholic, lives alone, going thru this....deep down tho he really is a great person and I feel so bad for him, and the mucous is HORRIBLE!!! he says that is the worse part....what causes all the mucous? the treatment? the tumors?..I am just at a loss and would love any input

Wow I am so sorry for all he is going thru and you all, but yes, it maybe too late from all I have read. Where in OH are you? What hospital did he go to? My bf is an alcoholic also and smokes AND is going on his 2nd bout with Oral Cancer under his chin hoping not in the bone and his surgery is this Thursday. Wow men, how can they stand the pain, I have a high tolerance but if there is something like that going on with my body, I wouldn't ignore it, but alcoholism is a disease as they say in itself. I feel so bad for you and your family. Can't really believe he went thru radiation treatments too if not reading incorrectly, that alone wears them out. Keep us informed. Please

thanks.... we are in Lima area (NW OHIO)....he finished the 39 radiations (5 days a week, chemo every FRI)...today....his followup w the dr is thurs...I am kinda hoping no more rad's I do not think he can handle it...but this same dr gave my aunt radiation clear up until the day she died (it was in her lungs and brain than)...so when do u say enough is enough?? yes the pain I cannot imagine...he just hacks on the mucous all day long and the sores are just horrible...and u are so right that alcoholism is a disease it all itself....it is such a sad situation, he really wants to fight I just do not know if he can handle more treatments, I am afraid the rad's would kill him quicker than the cancer....

The thick mucous is normal and usually lasts a few weeks and then gives way to "dry mouth". Everyone can react differently to the concurrent chemo/rad but most of us had the thick crap. He needs to consume appx 3000 cals each and every day and get plenty of protein in the process. We all looked pretty bad post this Tx. I lost 30% of my total body weight and I was a fitness nut( still am) pre Tx so I had zero to loose.

Repeating what he did that most likely contributed to his cancer, i.e. the heavy drinking will most likely be his death sentance but if it has spread to his lungs and is not attended to his survival chances are already diminished.

thanks for the reply, there is almost no way for him to get alcohol, as we have not given him any money so he cannot get the urge and go get it or have someone get it for him, all his neighbors are on board and will not give him any...he can hardly walk, he has no car....so really no one will give him alcohol, he claims he does not want any, yet he asks for one, just because....we tell him he can never drink again, and he says he understands it would kill him, yet I do not think he gets it.........he has a feeding tube that is dispensed 24 hrs a day, w his formula 3000 calories...he cannot eat so how can he get more protein? his dr is taking him off most all the vitamins cause he says he does not need them, but I thought those were the best things to keep?!

Welcome to OCF. Im so sorry to read of this sad situation. For more protein, pick up some high protein powder at a drug store or grocery store. Even Walmart sells it. The formula he is on is complete nutrition, kinda like baby formula. Im assuming it is used with a pump.

Recovery can take a while. Have patience and in a few weeks he will begin to feel a little better. Oral cancer is a rough one to get thru, its very different than other cancers. Oral cancer has its own set of side effects. I read about your aunt going thru radiation for cancer in her lungs and brain. Im sorry for your loss.

Best wishes for continued improvements for your FIL.

Wow... Im not sure what to say. Im horrified at the situation. And mostly Im sorry... this is a terrible thing for you, your family and him to go through. He may not understand palliative care but I am sure he knows on a base level that the treatment will likely not save him (though Im the type of person who believes in the never say never policy... because someone with stage one cancer can die from it and someone with stage four can survive)... Perhaps he is in denial or just content though likely in pain. Because of his health history (lung mets)/alcohol abuse Im almost afraid to suggest a second opinion but my head and heart tell me to tell you to fight...If you do seek a second opinion and they tell you the same thing then I would be inclined to say stop the rads if he's still doing them. It will just make things more painful in the long run... Chemo might help shrink the tumors. But rads is brutal on the healthiest of people.
About the mucous... very common with rads I drooled like a dog... a big dog actually... in fact I could have given marmaduke a run for his money. The radiation irritates the lining of the mouth. He must be in pain... I just can't imagine. Protein powder mixed in with his feeds will help him with any healing that needs to be done. Does he have magic mouthwash? There are good creams available for his skin. Are they certain that what is in his lungs is in fact cancer... (sorry these are all things that are running through my head!)
I guess what this all comes down to is a decision has to be made. Fight it... if possible with everything you have. Or accept that he is terminal (very hard to do with loved ones) and let him enjoy his last days... and franky if that means letting him have his beer then I would. What I do believe is that in order to make a decision like that you need to be informed. It sounds like a lot of information has not been shared. I would ask the dr. what the purpose of the rads is. Is it truly beneficial. Are they working towards trying to heal him or do the palliative thing, and if it is palliative then what about quality of life? Rads can ruin that quickly.
I really just wish I could give you a hug, because I am just saddened by all this and it sounds like you are an amazing and caring daughter in law( I know how it feels to have some one in your life who is terminal - my mom died of lung cancer at 59 - I am an only child.. I know she knew deep down what her prognosis was but we never actually discussed it. However we were always aware and informed about what was going on, why things were being done etc..)I'm so sorry. But you do definitely need to be given all the information. I personally believe that in order to give consent to treatment you need to informed... if there are pieces of the puzzle missing then that's just irresponsible medicine. So talk to your doctor straight up. And mostly remember that doctors normal people like you and me... they are educated and informed but not gods.

take care...

cheryl thanks so much for your words..u really made me feel better, a lot has changed in the past day....FIL finished his 39 RADS yesterday!! he earned a certificate of RAD GRAD, dr told him to get lots of rest these next few weeks than PET SCAN in 4 weeks and go from there....so we were w him all day yesterday and left at 10 pm...he was very tired but ok...we told him to get rest, than this morning all hell broke lose..he texted us to come asap...and we were at in house in 3 minutes...he was very weak and lethargic , said he was dying and he cried......we rushed him to er..I dropped my husband and FIL off as I had my youngest 2 kids w me.....ran them to MIL's and rushed right back to ER>..figuring my husband was going to say he passed.....immediate XRAY showed he has pneumonia...in the meantime he was shaking freezing cold but fevering...and mucous all over....at one point he started to almost choke to death it seemed...they rushed RESPITORY in and was working on the trach and getting what they could out....poor guy was just begging for help and my husband and I sat there crying, and feeling horrible for him...he whispered he felt like he was suffocating...........after about 30 minutes, he was much better and resting, but still muttering whispers...all we could do was tell him how much we love him and we are there for him......they admitted him to the cancer floor and I just left about an hr ago to get home to my 4 kids......my husband is sleeping next to his dad tonight hoping for the best.....his cancer dr came in and said how he could not believe how quickly the infection set in, and at this point we have to pray the antibiotics help bring him relief...so now he is battling pneumonia on top of this...I feel so bad for him and wish I could be there w my husband and him but I will be back up in the AM....and praying for the best.....will keep you all informed...prayers would be wonderful....hugs and God bless to all

Sorry he's got pneumonia, he might have been sick for a bit but between the cancer, and everything, it's hard to figure out what's going on. I'm thinking that perhaps because they are considering a PET then they're still trying to cure - him. If this is the case. In wonder if the pneumonia, might have been what they saw in his lungs (the congestion - maybe?) they haven't biopsies his lung have they? I imagine not because he's been so sick. I'm sorr again that you are going through this. If he's in the hospital he should be well taken care of... I will definitely say a prayer for him...and your family. Hugs to you... Tell him there are people here pulling for him... To try and get better.. Take care!

thanks so much...he also has COPD, and I too am wondering if the spot in his lung was the pneumonia? I do know tonight they are waiting on more results and did a culture but i do not believe biospy? not real sure...hoping for more answers tomorrow...

yes the power of prayer!!

Fingers crossed you get god news take care!!!

Nothing today? I pray all is well. I will keep checking on this throughout the day. God Bless!

thanks for your concerns, my husband has been with him most the day he is just resting...lung doctor says he will prob be in hospital for about a week...and he thinks he will get better and go home than...looking like the meds are doing there thing for now..of course I know it takes a normal healthy person weeks/months to get over pneumonia...so I am sure this is another battle....of course he will not be going home to home health care since he lives alone....he will more than likely go back to nursing home....we are hoping no hoops to cross with his insurance...as of 2 weeks ago his skilled nursing coverage was depleted but I believe a hospital stay for at least 3 days would grant another 60 days....praying that anyways....either way he needs to be 24 -7 care..thanks for the hugs and support..will post more as i know

Glad you all are getting a break... Sort of - yes hopefully he'll get to go o a nursing facility - take care and saying a prayer for him...

little update, he is still in hospital and today he had Thoracentesis done...a tube went in to remove lots of fluid from the lung..he says he feels lots better...I asked the nurse for more info of what was done and why and she was kinda snotty and said "normally it is a one time time but in his condition, the catheter is staying in to remove the fluid" she said if I needed more info to wait for the dr and he makes his rounds anywhere from 5pm- 11 pm.....we have waited for the dr before and always miss him..very frustrating............so i guess that is where we are at now...will update as I know more....hubby is going in early am before work to try and get some answers..

Well the nurse has no right to be snotty - but frankly I'm not surprised because my nurses when I was in the hospital were down right negligent at times soooo.... The tube being in is good it will help drain any of the fluids - and prevent things from getting worse. Are they doing anything to treat the cancer at this point? glad he is feeling better. And remember you have every right to ask questions and educate yourself you are advocating for him. Take are my prayers are with you!

thanks so much cheryl, you really brighten my day when hubby gets back from hospital, he is going to stay w the kids so I can go see him.....he JUST finished 8 weekly chemo treatments and 39 radiations LAST monday....and was on a 4 week break when this happened....

Ahhh ok. They may continue chemo at some point! Good luck my prayers and thoughts- are with you!, hugs!

at hospital yesterday the infections dr came in and said that tho the pneumonia does not appear to be worsening, the previous antibiotic appears to not be going "deep enough"..there fore he is changing him to zyvox, which he said is stronger yet carries more risks, esp, bone marrow, and since his hemo levels were low they were really going to keep checking that..he gets daily XRAYS...they did also say that if he continues to keep going in the right way and optimistic the zyvox works, he may be able to go home possibly in the next week or so...I am he cannot believe they would send him home how he is, everyone is in full gowns and masks to visit him, and they remove fluids from his lungs 24-7....how can he go home? the social workers at hospital do not give much info.....his insurance thru his retirement is tapped at 60 days in a skilled facility, he makes to much for medicaid, and since he is 59 (tho he gets ss disability) he is ineligible for medicare since he as not been getting SSD for 24 months.............so looks like he will have to go home again alone and have nurses come out...thinking of trying private nurse perhaps? not sure....we just have lots on our minds as we are all as he has...and the options are very few..would take him in ourselves but 3 kids and a young baby no room and not possible at all...sigh...well will update again when i kno wmore..thanks for reading...lets me vent it out a bit

On Monday, talk with the hospital's billing department. Most hospitals will have different programs that will give him reduced costs. Some facilities will give 100% free care to someone in his situation. They may ask to fill out forms and maybe even apply for medical assistance. Its worth a shot, the worst that can happen is they say no. Thats where he is right now anyway, you cant get if you dont ask. Dont be embarrassed about it either, everybody needs a hand sometimes in life.

Your FIL is like many people, biding his time til he can qualify for medicare. I dont want this to be taken the wrong way....its nothing political....it seems like what you just described is the government's way of dissuading people from taking ss disability.

Is the antibiotics given thru a piccline? Thats how they give the stronger ones. I ended up doing them for about 8 months and my blood counts were horrible. My white count was .9 and my doc gave me procreate shots to boost it back up. Once I went off the antibiotics, my numbers went back to almost normal range, the white count is 3.4 which isnt bad.

Best wishes to your FIL. I hope he continues to improve.

thanks christine, yes I wish medicare was an option as well...i DO know that he makes too much for medicaid, that is what they have been pushing for him to fill out but they agree he makes too much and I gave them a low ballpark figure....so are u thinking there is a no copay discount? they have not said anything about that..will have to look into...he has a post treatment PET SCAN july 25 so we are hoping for some answers there such as prognosis, etc..since we have not gotten any of that..very frustrating, they just say take one day at a time...and the encologist told the nurse he needs to be in a nursing home, he has not mentioned HOSPICE but I do know this dr is very agressive and usually calls hospice the week of someone dying.........we do not want to wait that long.........

POST OP PET SCAN in one week...we desperatly need this scan as we do not know what direction to turn too..


he used up all 60 days of his nursing care a few months ago while going thru treatment..he was released from hospital yesterday after 2 1/2 weeks...he went in he has PNEUMONIA and now has MRSA...


AS for the cancer....we was told from start he is INCURABLE but hopefully treatable...he weighs about 110 pounds, feeding tube and TRACH..he has been on tough cookie to say the least....


well the hospital was ready to discharge him and he literally has nowhere to go, he requires 24 care at this time



he went to a nursing home yesterday and we literally gave them all the $ he had $1800 to pay for 11 days of care....once we get the pet scan we will get "all our answers" as the encologist says..whether to continue Erbitux or not.....
Nursing home is trying their best to wqork w us for now until we get some answers of his cancer


MEDICARE----------I just cannot believe that he worked 32 yrs many times 7 days a week at a factory and now he has to wait 24 months for MEDICARE? he just turned 59 he was approved in a day for SS disabilty (they backdated it to JANUARY 2011) when he was diagnosed..........

but now he has to wait 24 months that he probably does not have? so in 11 days he literally will have nowhere to go and it makes me sick..I wish the compassion allowance would be for medicare as well because that would give him another 100 days of care.....are there any other options anyone can think of? Social worker at hospital just says MEDICAID but he does get a lot of $ each month.....2200 (before tax/insurance) for pension and 2300 SSD...and we are afraid he would be denied MEDICAID because looking back at his records. he would leave 400 in the bank for bills and take 1000 out each month and live on that and who knows what he did w that $ and people said MEDICAID will deny him if there is no receipt of what he did with his money?


really confused

Immediately contact your local newspaper(s) and radio and TV stations. Tell them all the same story and tell no one that you have spoken to anyone else. Maybe something will come out of that.

What happens in 11 days if no one comes to the nursing home to pick him up? Will they just place him outside? Doubt it.

wow crazy stuff! I got Ron on meidicaid and SSI or SSD...D I think the first week he was diagnosed with Non Hodgkins Lymphoma. I went down to SS myself personally. But he didn't bring in as much as your father does and he was working but they gave us a letter stating he has been released of his duties at work and when he is able to come back to work he can. He never has been able to since Dec 07. keep fighting and try for Medicaid. He does get quite a bit a month. Good Luck!

can I ask in shoret how medicaid works? they said if qualified he would keep about $20 a month and the rest goes to the nursing home?

I wish I could help but I'm a canuck! But wanted to with you luck!

thanks cheryl

Can you make an appointment with the social worker at the nursing home to go over options? He or she should be familiar with medicaid and can hopefully walk you through the process. That's what they are there for. I really hope they are able to get you the information you need to help your FIL. I'm so sorry that you have this stress to deal with on top of everything else that is going on.

Excellent advice Tracy - the social worker is the perfect person to help through the medicaid application process. If he qualifies, and they can tell you right away if he does or doesn't, then he will be considered "medicaid pending" and can stay in the nursing home on the pending status.
Because of his income - his contribution to cover a portion of his care in the nursing home will likely be large. You're in a tough spot here but the social worker can help you get through this!
Best of luck - hope you can figure this financial piece out so that you can focus on the really important stuff - family!

I don't know "how" it works, I just applied for him and since he had no income or pension after his last paycheck in Dec he was on it in a month, cuz Thank God he was in January on the 14th he ended up in the hospital and on the 23rd of January he was in intensive care for 2 weeks than the nursing home in late Feb or early March can't remember exactly right now but all was paid for by Medicaid and he still is on it as well as Medicare now too. Our caseworker gets his info update when they need it and he gets put on it again. He only gets a whole 16 bux for food but he don't eat much anyway and that's because of the SSD check he gets monthly. He has no worthy possesions at all. All he owns is an old Cadi 95, that he actually signed over to me IF something happened to him during surgery, which didn't happen so now who knows what he's gonna do. Can't get the damn thing to pass an "E" Check here in OH we have to do, runs great though! Big ol 2 door El Dorado, he actually gave it to my youngest when she turned 16 and signed it over to me, than after she got another car,his cousin passed and we got her Neon I think 98 so I signed it back to him lol and we still have that Neon but she has another car her father gave her his 2003 Toyota Camry ya she's the baby can you tell? lol So you have to have NOTHING to get it more or less. Good luck!

little update, as of 3 weeks ago the ENT said all 3 large tumors at base of tongue and throat are gone!! however there are active cells still there and at this point they say just keep an eye on things? Encologist said at this time chemo would do more harm than good.....my husband is with FIL now at a checkup, so waiting to hear the latest.

Will post as I know more..
we are going to go to head and neck center for 2nd opinion in columbus as well..


as for the nursing home, we got him a very nice duplex 4 houses down from us and he loves being home! nurses come 3 times a week and we visit him daily

I am so happy for you!!! Great on the second opinion!!! Please keep us posted! And take care!

Marisa,

I've been following your posts, you and your husband are wonderful caregivers. You and your husband are doing everything you can for your FIL to make him comfortable and happy to be near you.

You and your family are in my thoughts and prayers. Keep us posted.

Take care,
Connie

thanks so much Connie.....we are doing all we can....lil update, he is back in hospital

he called us yesterday saying he could not breathe....we ran down there and he looked fine, but he said it felt like the mucous was taking over his lungs!!! his mucous is HORRIBLE....he said he thought he was dying......so we called ambulance, they rushed him to hospital....


they gave him lots of breathing treatments and meds to help loosed the mucus, they did a cat scan as well.....nurse said they are looking at possible pneaumonia, or cancer has spread into lungs, or possible heart failure? but will not know until tomorrow, he says he feels much better, but the mucous is definitely at its worse, poor guy

tomorrow he is having (cant think of the word) but the tube inserted where it drains fluid off the lungs for relief......will post as i know more...thanks for the support! I read all these posts and you guys and your stories are all so touching and I pray and thank each and every one of you...good night

Hi Marisakay:
Have them check for a bacterial infection in his lungs - that can cause an enormous amount of mucus coming up into his mouth/throat. I'll say a prayer for him, and all of you.
julieann

Hi Marisa, hoping that your FIL is doing alright now and it is just a pneumonia. Hope to hear from you soon, may god be with you.

Sorry to here he's back in the hospital - hopefully it's just and infection, or possible pneumonia - good luck an healing vibes!

thanks for the prayers, the cancer has spread into his lungs and he has pneumonia he says his breastbone is very tender and we know there is a tumor there the encologist wants to continue treating the pneumonia and tomorrow start chemo??!!!


this really surprises me, would that not be overkill? I just cannot see the reasoning of rushing chemo so quickly while he already is so sick? I wish I was there when the encologist came in, but he came in sat night at midnight, when of course we are not there.......we are thinking the dr gave him not good news and maybe told him this is his only chance? but I am afraid it will be even worse for him?


has anyone heard of continuing treatment so quick? we believe it will be eurbitux again

Yes - it's possible they're still hoping to treat - though maybe not cure - it can't hurt - really though it depends on the type of chemo. I would do it e en if it's palliative sometimes it's not all about buying time but if t works it may shrink the tumors - (less pain? Difficulty breathing?) as the dr. Hugs to you . I know this must be very hard for you!

the encologist held off the chemo so he could get stronger....so while in long term hospital he did physical therapy 3 times a day....was to be getting discharged this past week so he could start chemo, when a week ago a HUGE tumor emerged out of his collar bone area....


he was in SO MUCH PAIN, they did surgery on it SUNDAY and drained it, the dr was shocked when bones came out w the fluid, he said his breast bone up to his shoulder is completly destroyed...they tested it and on monday, we got the news that the cancer is into the bones in his chest....

encologist told him , that at this point he has had the best treatments, and it would prob do more harm than good...


he said that CT scan from 3 weeks ago show fluid all thru the lungs, cancer thru each lung, and now of course into the bones in his chest...


they are giving him lots of pain meds, dr recommended hospice, but FIL does not want to "quit" he says....he does not understand that it is just too far gone and the treatments would not help...


I do not know what to say or do to help....


any suggestions?


thanks

Hi Marisa, it is a difficult decision and your FIL may be taking hospice as people around him giving up on him. Kindly discuss with your doctor if it is possible to continue as pallative treatment with some pain medication till the time he can tolerate. He may just have probably few weeks or months atleast if that can give him peace of mind.

thanks for the reply. heading there now to visit him, will try and find something out, last I heard he was still too "weak" for chemo at this point, but may be able to start a very low dose soon......dr said if adverse effects would immediately pull back..........my husband is only child and not handling this very well.....he does not know what to do for his daD.......thank you for your words...it really does help!!


I will update more as I know

Just be with him. Tell him you're still looking at or for other options - and do but - I had the same problem with my mom. Thankfully God ( I'm not sure how religious you are - I'm not super religious but I do believe in God. So forgive me if I offend) saw fit to take her before she had to suffer. We were looking into having her transferred to another hospital when she passed. Just tell him to focus on healing...spend time with him. Share with him the fact that others have been in similar situations and their bodies have fought back his may too. Hugs - to you - you've been an amazing caregiver. Just keep being there for him. Take care!

Just when I think I have been through rough times, I see people who have it so much harder than me. It seems like every time I come here I am compelled to prayer for those who are struggling so mightily with this disease. My love, my thoughts, my prayers are bent toward your father in law and your family tonight.

thanks again for all your words of wisdom and advice and encouragment! we went again today and he is in SO MUCH pain! it just breaks my heart, he has been on lots of pain meds since Jan and nothing is really helping for the pain in his chest anymore....


it just breaks my heart, my husband and I both agree we do not want him to be in misery....it is so sad


I asked him if he wants to go to Columbus to a Nat cancer hospital for possible clinical trials but he says he is fine where he is, so I am not going to push anymore, and let him make his own decisions and just be there for him......


we bring the grandkids up to see him and breaks my heart to hear my 4 yr old daughter say I LOVE YOU!!! and I can tell it breaks his heart too....


just so sad...


thanks again...will update as I can..

I am def going to get the book FINAL journeys as so many recommend as well...


and yes I am not super religious but I def believe in afterlife and that he will be rejoined w his father who died of cancer 18 months ago, and his brother who was killed w 2 other teens at a railroad crossing 40 yrs ago, his brother was 15...it helps me to know they will reunite again

And he'll be with you to watch out for you as well. Hugs and take care of yourself too - the whole situation is traumatic for the living!

So sorry my prayers going out to you and your family.

Little update, he is having 5 rads to breast bone for palliative care then that is it......he has really gonedown quick in48 hrs.... No energy to talk, etc, dr said due to high calcium 13.4....... He is on mess to try and bring that down but I know high calcium in late stage cancer is not good... Dr will not give any time frame of WHEN he may die........ I was hoping till Xmas but now realistically thinking it could be the next week or so I just do not know what to look for? Any brutally honest opinions is wanted please

Can I be honest with you? If his energy is poor, calcium rising and his consciousness poor, just be with him. Does he have a DNR? he may not have too long, once his electrolytes get out of whack. It's a downward spiral from there. I was in charge of my stepfather's care and they were pushing me to take him off the respirator (he had cancer that may have come back but he was in because of severe pneumonia, that ended up over taxing his only kidney and he ended up with an infection etc..) I refused to remove the respirator as I just couldn't fathom him slowly suffocating, I just couldnt do it. I figured his body would give up when it was ready and it did within a few days. I made it clear to them that i wouldn't permit them to pull the plug, but at the same time I wanted no extraordinary measures taken - your father in law's body will give up and he may become almost unconscious, like he's sleeping. His breath will slow and that'll be it. Hopefully it will be peaceful. It's a horrible thing and heartbreaking but he will be at peace. Too many times we push, so that we can have more time with a loved one but in some way thats inhumane, especiakly if heir last few days are painfilled. Hugs and god bless! I'm sorry you're going though this!

thanks cheryl, he is still a FULL CODE, and the manager at triumph talked to him and tried to explain at this point many patients are not full code.....and he told her "we would be so upset if he did not find till the end"....which we have told him over and over we just do not want him in pain...........



he also tells us if he is choking on his sputum, he wants help of course but if he is dying he does NOT want to be hooked up to a machine....


his last pallative radiation is THURS, than they will reavulate him, then prob he is going to the hospice house 20 minutes away...


the encologist will NOT give us any kind of ball park estimate, but but aunt who went to him literally told the family the NIGHT before to call hospice.....and also my husbands grandpa he said the same thing.......so I know it can be any time..



I just said w him for hours yesterday and watched him sleep as to not disturb him...


when he opened his eyes a minute I said hello and he gave me the biggest smile!! then said "rub my head" which I gladly did as he slept on....

a few hrs later he woke and we had a great visit, he was alert, laughing...and crying. knowing that he will die but he has made peace w that....and he told me how much he loves me and we recalled all of our great memories together..he truly is like my own dad if not more.....we lived w him for 3 yrs when we had our first baby 13 yrs ago at the age of 19, trying to get ahead in life...


he is one of my best friends and it does break my heart...


my husband is w him now and we are doing "shifts" since we have 4 kids and 2 of them are sick right now...


I will keep you all up to date...

thanks for all the kind words

So sorry God Bless your family and bring them Peace.

Thank u, he is still hanging in there and still smiling and being his funny self!! He has been in a hospice house for 3 days and it has been wonderful for him!! For the first time in weeks his pain is alleviated and that makes him great full! We know every hour that passes is a blessing because we including hospice keep thinking THIS is it then he pulls thru! Just thanking all for his prayers and these nurses are Angels!!! We sit here 20 hrs a day and just be w bim

God bless to all of you.

Marisa - it's so good to hear that your father-in-law is more comfortable and in such good spirits. He really sounds like a wonderful man! I'm glad that you are able to have this very precious time with him. And Bless those wonderful hospital Angels!

quick update, mick is now no longer able to communicate at all it has been happening slowly over the past few days, it was mouthing words, and trying to write, than to small blinks and half smiles....to hand squeezes and eye flutters but now nothing it is sad however we know that means he feels little to no pain.....we feel he can still hear us so we talk to him while we are there and hold his hand and play him music.......we know it can be any time but at same time his vitals are all in normal range......just feel blessed to have had this journey w him and for him to know he is loved!!

Hi Marisa,

This is a very sad stage. A sign that death is coming soon is a rattle noise when breathing.

He is blessed to be surrounded by an abundance of love. I'm sure it means more to him than you will ever know. He is lucky to have you caring for him.

Sending you wishes for Mick's peaceful transition filled with love and precious memories.

Sandy
xoxox

Hugs and prayers to you all, you've given him everything and are amazing and wonderful.