I have to say my Dad has been a very tough man and he's always been my hero. I remember his first heartattack about 35 years ago, when I was only 4 or 5 years old. Then, when I was about 13/14, he told me that he had to go into the hospital to have a bump removed from his tongue. I will say, when I walked into that room, it was the most horrific site I had seen in my young life. Staples from his lip, down his chin, around his neck all the way to his ear. He was being fed through his nose. I was so nervous I had to step into the bathroom to regain my composure.

I remember years later, catching him smoking again, and I couldn't belive it. But it wasn't my place to reprimand my father.

Then, when I was in my 20's he went for a physical and was admitted immediatley into the hospital to undergo triple-heart bypass. The doctor told him, if he didn't stop smoking, he was going to die. He hasn't touched a cigarette since.

About 5 years ago, it was getting to where he was having trouble swallowing. A g-tube was inserted and he's fed himself several times a day for the past 5 years. Joking that he just sat down for a big round-steak. Or saying that he tried to get the doctor to install a bigger tube, so that he could slide an enchilada down it.

About 2 years ago he started getting some pain in his jaw where he had had the cancer surgery 25 years earlier. They immediately referred him to MD Anderson, where he started his treatments. He seemed to be doing good up until this summer, he was beginning to lose his voice and the pain was getting worse. He had another scan at a different hospital, which was sent to MD Anderson. They told him, he needed to return.

At this point, they informed him that it had spread to his lung, a place on his hip, on his spine and looked like into his legs. They said they could try the treatments (not Chemo, but something else.) If after 3-6 treatments, if the spots weren't getting smaller, there would be nothing else they could do.

I've just finished "Final Journeys," which has been very helpful. He has been showing my step-mom how to do the little things that he usually does around the house. He's also become a little short with her. He told me today that he's not sure if he can do the 4 remaining treatments, but he wants to come home once that's done.

I'm not sure if my step-mom is trying to not scare me, or if there's a little denial. I told her that we need to be formulating a plan. As you can tell, she's been taking care of my Dad for the past 35 years. However, I told her that it sounds like he wants to make sure that she is taken care of. I told her we need to let him know that we have it covered and I'll take care of her. I've told them numerous times that I will fly out to Houston to help them get home. After fighting this stuff for so long, I get the feeling that he's tired and ready to go home (for good.)

He's 80 years old, a strong fighter, and will always be my hero. But I feel the time is coming..

Dear rsharpe,

My mother was in denial when my dad was dying. She'll feel lost without him. You are wonderful to reassure your dad that you'll take care of her. That is a beautiful thing for you to do for both of them.

My dad made peace with the distant mets and knowing that he was terminally ill--way earlier than any of the rest of our family. My initial reaction, which I reigned in quickly, was to encourage him to fight. But, knowing that he was ready and that it was comfortable for him, I took his lead.

I walked with him on his journey without trying to convince, to give hope, to cajole, to distract. I was just his companion. I made sure I got in the right state of mind so he didn't have to put on a happy face for me, prop me up, or worry about upsetting me. It freed us both for some deep bonding and meaningful conversations. It was the saddest time in my life. And, it was the most beautiful. It was the last opportunity I could really love my dad. And, my love was all I wanted him to feel.

I hope you are able to have precious memories of this time you are sharing with your father. My thoughts and prayers are with you, your father, and your step-mother.

Sandy

Hi there i sincerely Hope your father's treatment works - he sounds like a strong man!! I think it really helps to let him know that he doesn't have to worry!? that you've got everything taken care of. Hopefully he will finish his treatments - but if not just enjoy your time with him. Hugs and I do hope things get better for him.

Dear rsharpe - I'm so sorry for the difficult road your Dad has had to follow but it sounds like he has been a real fighter through all he has had to experience. It is good that he has you to be there for him and that he knows you are there to help your step Mom as well. I lost a dear friend in similar circumstances a year and a half ago and she, too knew and accepted that she was terminally ill long before the rest of us could or were willing to. Her cancer had spread to all parts of her body and she had heart problems as well. You mentioned your Dad being "a little short" with your step Mom. Please reassure her that this is just be part of the effects of the cancer experience and has nothing to do with the love he has for those around him. The importance of the precious few moments has been expressed so beautifully by Sandy. For me, it was a time that helped both my friend and I to share so much that previously, because of our busy schedules, there had been little time for. We talked about our experiences, children, grand-children, our shared hopes for the people and things that inspired us. We laughed, too - and once, when I could not hold back the tears, she comforted me! It was truly a special time for me and provided many happy memories of our friendship. I hope that you, too, will have many precious moments with your Dad and your step-mother that you can share with each other in the days ahead.

thinking of you as my husband and I are dealing w the same sad news my 59 yr old FIL diagnosed in Jan, has now spread into his lungs and bones in his chest, he is in horrible pain and cannot take anymore treatment as it would do more harm than good.........I do not know what to say other than I am here for you as well...if u would like to talk we can....Take care

I thank everyone for their responses. My Dad just had his 3rd treatment (of this round) last Friday. His mood has changed, so much that they're getting away for a few days, then back for treatment on Friday. They have increased his pain meds. I think he's on 2 patches and hydrocodene 4 times a day. I have to give props for my step-mother. She has taken very good care of him. He's said that he wants to come back to NC once he's done with these treatments.

marisakay, is your father-in-law's pain in his neck/mouth region, or can he feel it in his bones? I hope they can get the pain under control. Maybe that will give your husband some time with his Father. If he/you haven't read Final Journeys, I would highly recommend it. I don't think you can ever be prepared, but I think it will help me with how I handle myself around my Father, as well, how I handle this with my children (10,8, and 3.) Take Care...

Welcome to OCF, RSharpe. You will find lots of support here. Im sure it is very difficult to watch from afar while your father battles this. Your father is a 25 year survivor, that is amazing and inspiring!

Im not sure if I read your post correctly. Im sure whatever he is going thru is not easy. What are his 'treatments'? How was his cancer taken care of 2 years ago? Is this the 3rd time your father has had cancer, or is it still the same battle from 2 years ago? Sorry for asking so many questions, it helps to get to know your fathers history so we can help.

Please add a signature when you have time. Its easy, click on the "My Stuff" tab, then on the drop down menu, click on "Profile". Scroll to the bottom and type in the white box, click "Submit".

Best wishes to your father with everything. Hope he is able to enjoy his mini vacation. A change of scenery can do wonders sometimes.

Ok, sorry I haven't been back in a while. It's been a crazy few weeks. So, my Dad was going for his final treatment at MD Anderson, but got to coughing and couldn't stop. They admitted him into the hospital and found that he had pneumonia. My step-mom called that Saturday saying that things were not looking good. She was very scared. They were mentioning intibating him. I mentioned that this might be against his Living Will/DNR. After talking with the doctors, my Dad told them that he didn't want to be intibated (I hate to say it, but I think this was the right decision.)

So, I called USAirways and found that I had accumulated just enough frequent flyer points that my ticket from Charlotte, NC to Houston, TX was only $120 (compared to $800 minimum.) My trip went very well and I arrived at MD Anderson that night. While my Dad was in bad shape, over the next couple of days, he got a little better to where they released him from the hospital on Wednesday. However, at this point, we found that the treatments had not helped, and he was being referred to hospice.

So, he was released on Wednesday and that Friday, we headed back to Charlotte, NC. My parents have lived in a motor-coach for 15 years. So, we had everything we needed; a feeding pump, an oxygen machine, etc. We made it back to Charlotte, NC on that Sunday and met with Hospice the next day.

So, if you're to the point where your loved one will be referred to hospice in the near future, I would highly recommend "Final Journeys." I saw this book on one of the posts on this website. A tough read, but very informative. I don't know that you can ever be ready for a loved one to pass, but I feel that I'm closer than I was. Additionally, I feel that the information that I received helped me be an advocate for the hospice process.

For now, my Dad is doing ok. He's in a weird stage; he's feeling better, yet it's a terminal diagnosis. He doesn't really feel like doing anything (ie. reading, working on the computer, etc.), so he's kind of sitting around waiting on something to happen, yet nothing is happening. He's having good days and bad. It's all part of the process, I guess.

I'll try to post more later as things progress. My hope is that by reading this someone may get something out of it.

It wild be wonderful if he surprises you all and hangs around for a bit! Hugs an my thought are with you!

Hope all works out for you and your Dad, hope you have some more quality time with him. Semper-Fi Bob

I hope you and your family have some quality time with lots of good memories, laughs, hugs, and peace. I have not yet experienced sharing the end of life with someone. I lost my father due to a car accident 9 years ago, so I didn't get to say good bye. The thought of having to walk with someone at your father's stage of life is terrifying to me, so when I come up to that experience in my life, I will remember your posts and that book. I guess we will never know which is worse, a long, sad good bye or not having the opportunity to do so. You are a strong person and a good son for being so supportive of your Dad and step mom. Your Dad is your hero, but I'm sure in many ways you are a hero to him. Just think of the pride and satisfaction he must have for you knowing that he raised a compassionate, loving, and loyal son. I wish you peace and comfort in the coming time.

With great care,
Kerri

Having walked this path with my dad (sister and mother) I have much empathy for your struggle. It can be a dark and lonely place. It forced me to look long and hard at my own mortality and that was long before I had cancer. I suppose that it prepared me somewhat for my own experience with cancer. Soon after my initial Dx, my wife and I did a living trust, will and advanced directives.

Some of the things I learned about the journey are that the human body is remarkably resilient and death is not always an easy or forthcoming thing (in spite of how frail a person may appear - he was quite lucid until his last breath). My dad had non Hodgkins lymphoma and lived much longer than we expected. He was down to under 80 lbs when he passed. His pain symptoms mitigated as the body was slowly shutting down. A year ago I revisited this journey with my MIL when she died from a botched surgery. The hospital staff defied the DNR orders and broke her ribs attempting CPR and also mortally wounded her from damage to the recent surgery.

If he is at home and goes into arrest, call the hospice people - not 911, as EMT's are required to take heroic measures to resuscitate. At least keep a copy of the DNR on the refrigerator door and this may prevent this procedure from happening in case EMT's are called. I also believe that, in many instances, we actually choose the time of our death. My dad died during my one day off (and he knew how distressing this whole thing was for me). I can't speak highly enough of hospice care. They educated all of the caregivers, provided all kinds of aids. Insured a pain free quality end of life, provided assistance with bathing, respite care, visiting nurses and bereavement support afterwards.

I am sorry that you have to go through this but losing your parents is a rite of passage. This is also the time to converse, express, remember, dot i's and cross t's, find out family "mysteries" and many other wonderful aspects of your lives together.

On my fathers death bed he revealed to me that I had 7 brothers and sisters (I was always told I was adopted because I had a single mother which wasn't acceptable in the 40's as it is now).

another couple of crazy weeks. I do have to call out that it's been about 6 weeks since my dad was referred to hospice. You have to be thankful where you can. Also, I can't stress enough how much the book "Final Journeys" has helped.

So, last week, things take a different turn. My step-mom caught the bug going around. She was self-medicating, etc. She finally gives in and goes to the ER, thinking she would see a doctor, get an RX, and be back home in no time. She was admitted into the hospital with pneumonia, and was there for another 4 days. Luckily, with me working in IT, I was able to work from home the entire week and care for my dad (ok, we watched westerns all week long. I highly recommend Encore Westerns.) I bring this up because I think this is all too common for the primary caregiver to not care for themselves. It's an extremely tough job watching someone 24 hours a day, as they slowly deteriate. Sometimes, though, you have to let things run their course and be there to pick up the pieces... There's no shame in being second-string caregiver (and keep in mind, the care is part of the grieving process.)

So, my dad had the bug the week before. I was glad that hospice did treat it with antibiotics. I was a little concerned that they would say "oh, it's part of the cancer, it's just part of the process." He did really good last week (for where he is.)

Again, I'm back to thinking we're taking some final steps. A couple of things that I've learned;
- People dying of cancer lose weight. They also lose their appetite, this is part of it. Don't keep telling them how much weight they're losing. They know.
- The reason they are losing weight is that the cancer burns the calories faster than your body does. Therefore, the more you feed them, the more you're feeding the cancer. This one is tough, but at this stage is all about comforting the patient. Listen to Hospice on this one.
- I've noticed that there is an increase mucus in the throat. I'm thinking this is part of the cancer taking over. Additionally, as he was suctioning out the mucus today, a piece of his tongue came off. I'm thinking that can't be good.
- This is a tough time for the patient. You're sent home, basically expecting something big to happen. Yet, you get home, and nothing is happening. After a while it starts to get old, I'm sure. On one hand, they don't really want to leave. Yet on the other, this crap of just sitting around kind of sucks. As the caregiver, or even second-string caregiver, just being there is good. Don't sweat about what you're going to talk about, or try to make conversation. Sometimes just being there is enough.

Anyway, I hope this helps someone.

Robin

God bless - my wish is that he begin to feel stronger daily and his body fights this disease. Good for you for spending time with him watching westerns that's fantastic.

Hi Robin,

You have learned a great deal and are well prepared...as much as a person can be, anyway. Thank you for the insights and resource recommendations--particularly the book, "Final Journeys".

Those westerns will become a part of your cherished memories and family folklore. Create as many of those memories as time allows. There are never enough of them.

I sat with my dad while waiting--a precious, and all too short length of time. He told me stories about his childhood and teen years. I was fascinated. He had never shared them before. I think he had things he wanted me and our family to know about him and remember. My sons are now 12, 18, and 21. I find myself telling them the stories about when my dad was their age. I'm glad I can bring him into their life through stories. More than anything else, I feel blessed to have had that time with him.

May the memories you create together sustain you as mine have sustained me.

Sending wishes to you and your father for great peace as his journey continues.

Sandy
xoxox

Robin,
Thank you for your very wise words. I too went through this with my Dad. It was a very hard time but a gift as well (although it wasn't readily apparent at the time). He also had cancer and the weight loss is part of it. My Dad was less then 80 lbs. at his death. Some remarkable things I learned are when the body starts to shut down, the pain ceases and also there is no sensation of hunger or starvation even though they are not eating (or eating very little). This is all part of the natural process of dying, but can be very disconcerting for the caregiver. The mucous buildup in the back of the throat is normal as well and will cause a "death rattle" (you will never forget this sound). Death is imminent, usually within 24 hours, at this point. It was a gradual process with different organs shutting down in sequence. It surprised me how resilient the human body was and length of the process. My Dad was lucid right up to the end and we had great conversations and time together that I will cherish forever.

God bless you as you go through this journey.