janehill

Marci - you are absolutely in the RIGHT! I have personally been in your shoes. I had my mother living in my dining room for months (after years of being the ONLY person to buy her groceries, fill out paperwork, etc.). I wanted to bring her into my home, I wanted to do for her, I am NOT sorry I did that and it brings me peace; but it was EXTREMELY difficult. However, I was blessed in that everyone did understand that my life had become exponentially more complicated. I vented a LOT to my wonderful aunt - who even flew in from Florida to help me - and she was nothing but understanding and sympathetic. Had she ever taken the slightest attitude with me or behaved in a way that implied she was AS affected as I was, I would have snapped. Things were difficult enough caring for my mother's needs 24/7. And, yes, sometimes all I had was the acknowledgment of others; words like "after your mom, you're definitely the one affected most by all of this - your life is in shambles!" Gosh, it helped me to know that it wasn't me that was weak, rather it was that awful situation that was hard." Maybe that's pathetic and maybe we're supposed to be so stoic and positive that we just smile and say "it's difficult on everyone" but when you're the SOLE caregiver for a terminal loved one and all that entails, it's difficult to keep that strong force within you and nearly impossible to watch someone else dare to imply their hardship is equal to yours. So you come here and vent Marci!

Nick, I'm so sorry for the idiocies of others, truly. But you have to remember that - it's their stupidity that's the problem. One suggestion as a reply for all of it, "None of us are as good to our health as we should be - still don't deserve cancer - and Mom and I thoroughly discussed what she wanted done with her remains and assets and, rest assured, I have respected all of it." (oh, you can stick your tongue out at the end! )

Nova, I've got to agree with those who've suggested just letting it go. If he wants to believe he's cured, who is that going to harm? No one, not even him. In terms of balancing that with reality, not sure you need to worry about it. If he wants to go back to work, let him talk with his Oncologist about it. If the doc thinks he can go back, let them work it out. If the doc says he can't go back, he'll have to explain that to your husband and the why. In any event, you can remain the positive one. You can even tell those who ask you on-the-side if he's cured that you don't have that understanding but don't want to burst his view. What more can you do? Much luck though - I can imagine it's tough.

Hey, here's what worked for my mom. I used a dropper (the kind used for giving children medication) and would fill it with Gatorade (I didn't give her just plain water because she was drinking so little that I wanted her to get the advantage of electrolytes as well). It takes a long time and can be a tiresome process but it works. She was having such trouble swallowing so I would sit her up really well (she had a hospital bed so I would just set it to a sitting position) and it would take about ten minutes to get a fair amount into her - maybe 1/2 cup. Well worth it.

Being the sole caregiver for a seriously ill loved one is beyond draining. You have my understanding. And your wife is very lucky to have you. Hang in there - there will be good days too.

First off, excellent news about your mom's improved spirit and the focus on the positive from the Pulmonary doc. As for the Oncologist, please do encourage her to simply tell him that stats are only appreciated when they're requested. I am all for honesty - even brutal honesty from an experienced physician, because as individuals we all have a right to hear as much as we desire about our health. But for him to continue to toss ugly stats to your mom, knowing she doesn't request them or find them helpful is really disturbing and mean. I'd imagined he was more tuned into your mom and was respectful previously - maybe not so. My mom's Oncologist was nothing but honest but NEVER offered a single bit of bad news or statistic until he was asked. Further, the guy would offer things up like telling my mother not to make up her mind on dying since she could live years and years on Tarceva and get really tired of waiting to die. I think mom's doc had the perfect balance. No talk of anything but what we needed to do, offered up alternative plans and ONLY provided grim realities if asked. And even then, he was quick and earnest to follow up with the reminders that individual people can fall anywhere outside of a statistic.

tjrasmom, thanks for explaining. I think meeting with her Oncologist is going to help immensely. From the quotes you posted earlier, he really seemed to have been directly responding to your mom's question/comment about the cancer being gone, rather than having arbitrarily burst her bubble. I think you're both very lucky to have found a great doctor who's been so positive and upbeat (my mom's Oncologist is a gem of the same, rare kind) and I'm glad you're going to extend him the benefit of the doubt and talk with him. It sounds like it was an alignment of expectations - that the attainable goal is remission (and that it's been achieved - which is marvelous!) vs. the unattainable goal of a cure.

"So, since the tumor is almost gone..." And he interrupted her and said, "Oh no, it's not GONE....it has shrunk. But you still have cancer in your pluera sac other areas..." She said, "So what do we do about that?" And he said kind of matter-of-factly, "well, that's your cancer.....you'll live with that and we'll monitor you." --Please know that I am asking the following with a very good heart and intentions. What is wrong with what he said? I mean, that's the absolute truth and it doesn't seem even remotely harsh. Seems like a no-win situation for a professional whose expertise is sought. If he lies and says, "yeap, it's all gone," how does he prescribe future chemo or targeted therapies to a patient who supposidly has no more cancer? If he tells the truth and says "you'll live with that and we'll monitor you," his patient becomes depressed. As a suggestion, why don't you ask your mom to authorize you to be the only person to discuss/receive all information on disease/treatment/lab. That way you can talk with the doctor frankly and report to your mom only what she wants to know.

My mom lived over an hour away and I was there all the time to help her. But when she was no longer able to live on her own I moved her into my house - it was difficult but certainly the right thing. There is no way on earth I could have imagined my mother living on her own somewhere battling this disease and me in another state making calls but being unable to physically help. To say that treatment is taxing on the body is a gross understatement. I know there were people who thought I was nuts to take on so much. They would tell me how much they adored their parents more than anything in the world but couldn't do the same for them for one reason or another. And I would say, If it was one of your children, would you do it? They'd say yes, of course. And I'd say, See - when you love someone that much, you figure it out but you do it because you can't imagine not doing it. You'll figure it out if/when you need to, don't worry. That you're even asking the question shows where your heart is.

Tell your mother that my mother just left this earth 2 months ago from lung cancer, yet she never smoked. Tell your mother that I am struggling to take off 30 lbs. on Weight Watchers and that having them on me increases my risk for several cancers. Does that mean I am bringing cancer on myself? If so, I'm in good company given the obesity problem in the U.S. Tell your mother that people have un-safe sex and are stricken with HIV. Do they want it or deserve it? Tell your mother that most smokers don't develop lung cancer. Remind your mother that cancer is not a punishment or judgement - it's just an enemy you didn't invite to the party or engage in a fight, yet it's come. And that if cancer was being handed out to those of us who've been less than stellar in the way in which we've treated our bodies, there wouldn't even be enough Oncologists on the planet to treat the citizens of Rhode Island. Tell your mom you love her and that it's good to get angry and then channel it wisely - at ridding herself of this cancer and making life right for herself again. I hope she comes to term with her role in this - a survivor who is blameless!

Some pain meds (other than morphine): Fentanyl patch (25 mcg/hr - works for 3 days straight without having to take pills) maintains a constant flow of pain meds - can't recommend it highly enough. Tramadol Vicodin Percocet And when all else fails, have them prescribe Roxanyl (which is liquid morphine but since it has a different name....) One of my thoughts on this subject is that when the pain is really bad enough, patients will inject Fruit Loops into their veins if they thought it would help. So, basically, I'm saying....maybe she just needs some time to do it her way and to not feel needy of drugs to get through this tough road. When she really needs it, I'm sure she will. Much luck to her (and you).

Nick, that story gave me the chills. Yes, I think it was your mom. She's been looking out for you and knows you're still losing everything. So she's helped you and will continue to.

My best to you. Just be with your dad now. It'll make his journey on easier to have his loved ones around. And you'll feel better too.

Kelly, I so understand what you meant by having lost the one person who loved you so unconditionally. We all love our parents but never as blindly and unconditionally as they love us - it's just some wonderful biological imperative that that's the way it works. To lose our parents - a mother - gosh, you feel like an orphan (yes, I do even at 40!) and it really is the loss of that one person who would never ever ever ever turn their back on you, no matter how angry, disappointed, hurt - whatever - most moms are incapable of doing anything but loving their kids no matter what. To feel sad and lonely now is not only natural, it's required. And don't let someone else's inability to understand that take it away from you. You owe this to yourself and mom.

I agree with others on the "rally," which is what I think your mom is referring to. My mother had what I would call a rally. After 2 weeks in the hospital, no eating and blood counts in the tank, she was transferred to in-patient hospice. Well, there she started to eat and was physically getting better (though her mind was gone) and then, pretty suddenly, she started to have pain and more pain meds and more disorientation and more pain, etc. Within a week of returning home to me, she was non-verbal and 5 days later she was gone. But I don't think a rally is defined as someone who is as well as your mom is (shopping, etc.). I think a rally is more of a phenomena that is witnessed in a patient who is seemingly on death's door - just doing so poorly - and then seems to take a turn for the better and actually improves (maybe sits up, eats some, talks, walks a bit, etc.) and a few days later dies. I could be wrong on this but that's the only rally I've heard of and your mom doesn't seem to be doing that. She's just feeling scared; that's understandable. Give her a hug and tell her to enjoy her good health but not to be disappointed that she's staying that way - 'cause she's actually IMPROVING!

Jill, I'm so sorry to learn of your mom's passing. You were so good to her. Hug your dad and be close to him - it will make you both feel better to be with someone else who loves your mom as much as you do.

Today, on what would have been my mother's 73rd birthday, I buried her ashes in an urn under the most beautiful sky and most perfect autumn day in New Jersey. I wrote her a letter and tucked it into a stainless steel cylinder with a picture of my mom - and I buried it in the urn with her ashes. It was far more difficult than I'd expected but the day was so perfect that I just had to believe she had some hand in that. I told her how much I loved her and I apologized for being so short tempered so many times and that I, too, forgave her for her shortcomings. But that I miss her even more than I'd imagined I could and that I expect that to last until I draw my last breath. Then I motioned over for the cemetery caretaker to come over and he uncovered the grave. I placed my mom's urn on the bottom and he asked if I wanted him to cover it then, which I did. So he shoveled in the dirt and I watched until it was level with the earth and I left feeling good about that. I needed to know she was safe and that I'd carried out her wishes to the letter. I then went to lunch with a girlfriend of mine and we toasted a glass of chardonnay to mom in celebration of her birthday. God I love that lady who drove me insane.

Oh Jill, my heart really breaks for you - and your mom. I know when my mom was diagnosed with a malignant pleural effusion and it was drained by a large boar needle, she said it was an awful experience and she thought she would pass out - that she had to tell them to stop (and they did). Frankly, I don't think she would ever have agreed to do it again. Just be with your mom and love her - much more is out of our hands. Hugs! Jane

Mary, I think Katie has an excellent point about you getting the perspective of someone whose outcome was favorable. Mine wasn't but a woman on my team at work's mother has NSCLC (in a bizarre twist) and was diagnosed March 2007. She had a huge tumor pressing up against the arteries around her heart and the sternum. She was considered stage IIIA and was terribly ill when diagnosed. This woman's focus became her mother. She talked with our boss and figured out a way to work from home and it's worked. She still works from home but in all of this time it gave her the flexibility to take her mother in for chemo and daily radiation treatments. Low and behold that last week they got the results of her PET and CT scans and the doctor said that though he's not very old, he's seen thousands of cases and never has he seen someone respond so well. She is "cancer free." He credits this to the care his patient received by her daughter. She was able to be there during chemo and radiation treatments and watch what her mother ate, drank, meds - she became her mom's personal assistant and nurse. I can't tell you how blessed she feels that her mother had such a wonderful outcome and in knowing she had such an integral part of it. When her mom was diagnosed, they said she had "weeks" and their world bottomed out. She was now told to "go live your life and forget about illness, you're perfect." That is the ultimate payoff we all seek for ourselves and our loved ones. And it's sweeter than whatever the cost to get there. I know personally how impossible this time is for you but sit, breathe, relax, make a plan, figure out logistics and you'll get through this with a long future to share with your mom.

Mary, The Ensure plus is an excellent idea that was suggested. Additionally, if she likes ice cream, I would get her the Haagendas Extra Rich vanilla and make a shake with whole milk and heavy cream and some vanilla extract. It seems her appetite is small so you'll have to really think about what you give her to eat so you maximize the calories in every single meal. If she wants eggs for breakfast, load them up with cheese and ham, if she wants a sandwich for lunch, consider pastrami with swiss. The object is to never let a meal pass with mom eating anything but the most calorie-rich version of what she wants. Hope it helps and much luck on making mom chunky!

Nick, such wonderful news. I have heard that a first child can be very healing to those of us who've lost our moms and I hope that proves true for you. But I have to believe that your sweet mom is even more thrilled than you and your wife at this moment - that she's tickled pink to be a Grandma Angel.

The pain is searing. My chest is in excruciating pain. I want to run - just run as fast as I can and get away from myself. I want to rid myself of reality. When she was diagnosed, her only request was that she not go into a nursing home. I was able to keep that promise. I told her she would be cared for in my home. She was. I told her I'd be by her side when she left this earth. I was. I was blessed in so many ways and I want to remember that to get me through this bottomless void. Thank you all for so much support and kindness you have extended me - even when my patience was exhausted and I was impossible to deal with. I'm sure I'm not alone in wishing my mom was still here for another day - alert, conscious - that I could say to her, "Listen to me Mom, because there's not a lot of time. I'm sorry when I said ugly things that hurt you; I was tired and frustrated and scared. But I love you so much and I thank you for working so hard to give me a good life, I forgive you for the ways in which you went wrong and I ache for you until we meet again." I hope she's dancing for the first time in her life, amidst a crowd of angels. Sweet Mommy, I love you.

Vespa,your siblings are making ridiculously ignorant comments and are clearly unaware of how utterly hypocritical they are. If it makes you feel better, remind them that they don't treat their own health so perfectly (non of us do) and ask them if they deserve heart disease or diabetes for being overweight or cervical cancer for having exposed themselves to HPV or.....the list is long (and that mentality ticks me off!). But, mostly, my heart is with you on this - it's so very difficult. Stay strong for your mom - you'll both get through it; it is possible. Jane

Kate, you've been such an awesome daughter. You've been so kind and loving in your amazing and constant care of your mom. I hope that brings you great comfort over time - to know she left this earth with you by her side and, yes, of course she knew that. Your love was never missing. Cry, laugh, get mad - do whatever you need to. I wish you peace in the coming months.

Thanks so much for the kind and caring words. I read a trivial Hollywood story the other day in Marie Claire that held such a beautiful message, it really had an impact on me. It was a feature on Angelina Jolie and in discussing her mother's death from Ovarian Cancer she said her ex-husband, Billy Bob Thornton called with these words, "You'll never get over it. It's never going to be OK, and once you accept that, you realize you never want to get over it. Just kind of let it sit with you, and let it be a part of who you now are." It resonated so deeply with me. No, it'll never be "okay" and that, in itself, is okay.