Feeling powerless...

[ErinC1973]

I don't know what to do with my mom anymore. (Is that something said often around here?) I am from the NSCLC board, my mom was diagnosed with stage IIIB on 11/3/04. My dad died of NSCLC on 9/2/99. That said, he really gave up early, 9 months from diagnosis to death. And recently my mom revealed to me that he never quit smoking.

So here we are, with the grim reality that my mom, who fought breast cancer in 1999 (7 weeks after my dad died) and won, is repeating my dad's fate. Immediately upon her diagnosis she said she was going to fight this and win, unlike my dad. So we (my husband, my mom's caregiver, who is my best friend, my kids, and I) all took her to Cancer Treatment Centers of America. I made the appointment for the 1st, 2nd, and 3rd of December and we all took in the wonderful opportunities available to us. My mom said she felt ready to conquer this, and we were all confident she would.

Now, our last appointment was on Dec 15th with the medical oncologist, who put her on IRESSA. Keep in mind that she was diagnosed on Nov 3rd, and spent two weeks in the hospital afterwards. I told her that in between this and going to CTCA I felt this was her time to get strong to prepare for her assessment at CTCA, since they judge your treatment by your strength and health, and my mom is NOT the healthiest person--she is on hemodialysis, is wheelchair bound from post-polio syndrome, and still has a permacath for her hemodialysis because her fistula is STILL not mature, therefore her risk of infection is very high. She was all for it, but when it came down to it, would not eat properly, and very little at that. It becomes a battle day after day to get her to eat. It has gotten better, though, after meeting with the dietician who wants her to eat every two hours and get 53-80g of protein a day (she was on a high protein diet for her dialysis anyway, but that was a big joke) but now, since she's on the IRESSA she doesnt have to meet with the doctors or have interaction with others, so she sits all day and watches TV. We have met with the psychotherapist together, and she puts on a front that she's going to change her life and do what she needs to get well, but then she comes home and sits in front of the TV. She tells me she doesn't want to have to deal with it 24 hours a day. Well, my twins' birthday was December 17th, and I asked her if she wanted me to go shopping for them (she lives iwth us, if you haven't already guessed this) and she never answered me, so on that day, it hurt me DEEPLY that she had no card, no presents for them. When I called her on it, she said, "It's not like I haven't had other things on my mind!" I told her that she's contradicting herself, because she doesn't want to think of it all the time, yet she has a happy occasion and a reason to celebrate, and she tells me she wasn't thinking of anything else.

Last week I told her she had three appointments to make--one with the dietician, one with her physical therapist, and one with the naturopath. Every day I ask her if she's made those appointments and she sighs and says no. All this week I have not even said a word about it, because I'm going to get the same answer.

I have been thinking a lot about this and I am wondering if my mom is not withdrawing and preparing to give up. When we met with her oncologist in November, he said "This is the cancer that is going to decide your life." I know quite a bit about LC from when my dad was diagnosed, and am amazed at the progress that has been made in the short 5 years since his death. True, LC is a hard cancer to treat, and tragically it is usually diagnosed in late stages, but the advances that have been made are promising, and I think she has a better chance at surviving this than my dad did 5 years ago. We are making the best hospital and facilities available to her, making sure she is getting the best food, etc., and she is not taking full advantage of it. As of this week, since she has not made these appointments, I am spending the week trying to accept that she is preparing herself to give up, and sometimes I honestly think it would be better if she did, because she has been through SO much in her life, but of course this is my MOM, and I can't help but think of when I lost my grandparents and someone said to me, "No matter how old you are, when you lose your parents you are an orphan." And the thought of losing her absolutely suffocates me.

I have suggested to her that she needs help, because I think she is suffering from depression, and she yells that she's NOT TAKING ANY MORE PILLS. I know she is afraid of what may happen since she saw me take anti-depressants 9 years ago and get addicted, although there are so many more options out there now. without the side effects. I do think she needs something, because I think she's using the TV as her way of shutting out reality. But of course I can't force her to take something, and she really does not open up in therapy so that's essentially a dead end also. At this point I am the one who feels she needs therapy.

I see this every day--her telling people outside that she's doing good, that she is positive and upbeat, she puts on her makeup and a good front, but when she comes home she sits in her room and shuts us all out and turns on the TV. I know it sounds like that's all she does, but it IS. She goes to dialysis and watches TV. She comes home and turns on the TV. She spends the majority of her time in bed. When I confront her, she yells or tunes me out.

I'm not looking for answers here, just a place to vent, because I am sure that some of you may have experienced this same thing. I apologize that this is so long, and thank you if you've gotten this far. If I could scream virtually, I would.

[Treebywater]

No words... Just ((((hugs))))

[cindi o'h]

me too.

Cindi o'h

[kimmek]

Me 3 (((((((((((((((((Erin))))))))))))))))))))))

Hang in there, I know its tough, my mom has been acting pretty "bad" lately also. All you can do is be there for her, she knows this, try and just let her be for a few days, maybe if she sees you are done bending over backwards for her she will come around. Parents are so hard to "raise".

PM me if you want, we can compare mom's

love,

kim[/code]

[stand4hope]

Erin,

I've never had to deal with anything like this, but others have, so hopefully they will come online and give you some tips. Several years ago, my mother-in-law had to deal with this, though.

My father-in-law was like this, only he didn't put on a happy face for anybody for any reason. We don't know for sure that he had lung cancer because he wouldn't go to the doctor, but we're pretty sure he did. He sat in a chair in the dining room watching TV nearly 24/7 and slept with his head on the table. He was a very angry and bitter man, and was horribly verbally abusive to my mother-in-law as he sat in that chair drinking, watching TV, complaining and dying.

My sweet mother-in-law just let him lead the rest of his life exactly the way he wanted to. She just got him what he wanted and walked away when he got verbally nasty. I don't think there was much else she could do, and there probably isn't much else you can do, except seek counseling for yourself and find ways to cope if your mother is giving up.

I'm sorry you have to deal with this at all.

Love and prayers,

Peggy

[Ry]

Erin~

I wish I had some great words of wisdom for you but I don't. I know its hard. If she won't take meds for the depression, will she talk to someone?

[chloesmom]

Erin,

I really don't have any words of wisdom, but your mom sure has been through a lot. A cancer diagnosis is devastating and I know I misbehaved a lot during the early times of both of my cancer nightmares. Who am I kidding, I still misbehave over it (and other things) from time to time when those monsters come creeping in out of the dark.

Not to make light of the situation, but you can't control other people and their actions and reactions. You only really have control over yourself. I suggest that if the way your mom is behaving is hurting you, and I can certainly see that it is and I don't blame you one bit, why don't you see someone to help deal with her lack of proactive management of her health situation?

I can tell you, I can think of several people I know, some family members, who would not have any part of any kind of treatment if they were diagnosed. In fact, my husband's aunt was diagnosed with lung cancer I'm guessing, in about 1990. I'm guessing because she declined treatment and never told anyone until about 6 weeks before she passed away in 1993. I certainly didn't do that, but that's what she chose to do.

My experience with all this led me to see a therapist for about a year, and it was the best thing I've done for myself to deal with these medical issues. It was there that I finally came to the understanding that I can only control certain things, and not nearly as much as I would like and previously thought I could. I now just do what is in my power to control, and work really hard at accepting the rest as things over which I have no control. I think I'm a much happier person for it.

Good luck to you....I know this must be so tough for you to contend with.

Cindy

[SDianneB]

Erin, I don't know how old your mother is, but my mother is 91, still very active, and can be royal pain at times about her health. My dad was a doctor, and after he died, she became very wary of medical care because he was no longer around to direct her. We were lucky to get her in with an internist I worked for, so all was fine until he retired (yes, she is outliving not only all her friends, but all her doctors too!). Since then, she has another good internist, but doesn't seem to trust them much.

I'm the one with lung cancer and I'm doing fine, but she is having a real problem with one of her legs, and won't get anything done for it. For the first time ever, she seems to feel (and says) that she's too old to have it fixed surgically, and there is "no use" worrying about it, because she'll be dead soon anyway.

The truth is that if she really gets where she can't use that leg, she'll be bound to a wheelchair, and it will be over for all practical purposes, because she'll require someone to be with her at all times, and that means nursing home --- one of her greatest fears. I haven't played that card yet, but I'm not far from suggesting it to her to see if it gets her out of this awful attitude.

The point is that our mothers, (and sometimes ourselves) get into these emotional ditches and it's difficult for them to dig their way out -- they require our help. I'm not always sure what to say or do. I have told her that I am fighting this cancer like a demon, and doing it a whole lot for her, so I'd kinda like for her to fight for herself more and do it at least a little for me.

This is a hard battle to fight, Erin, and I know where your mother is emotionally -- been there, done that. I came out of it though, and your mother needs to do that too. I think you can help her do that, but just realize it probably won't happen overnight. A lot of love and support and hugs, whether she wants them or not (!) may go a long way to changing her attitude back to the one she started out with.

You have my best wishes ...

Di

[ErinC1973]

Thanks to everyone!

My mom will NOT talk to anyone alone--she has the feeling that therapy is for the weak. Meds are out of the question. I just asked her a few minutes ago about her appointments and she put me in my place and told me she didn't need any of that.

So basically I'm going to keep my mouth shut from now on. I actually have (amazingly) this past week and of course all she has done is hole up in her room with the TV on. But if that's what she wants to do with her life, so be it. It's unfortunate, though. Someone said I need to just let her do what she wants--but it's hard because she lives here and it affects all of us every day, including my kids.

I guess maybe I'm getting to a turning point where I may be "accepting" this diagnosis, and realizing that my mom, although she says she is going to fight this, really doesn't want to, and that soon I may be without her. It's my dad all over again.

Got to go for now...

[SDianneB]

Erin, maybe you should go and talk to someone and get some help knowing how to deal with this. Sometimes, the "tough love" approach works with my mother, sometimes not. I know nothing about your mother, so wouldn't have a clue what might work, but a professional might help you cope better -- especially since you have a family of your own to worry about.

Good to see you venting here -- I bet that helps you in its own way to just express your thoughts.

Di

[Snowflake]

Erin,

I'm the patient, the one with lung cancer and monsters under the bed. I'm almost two years out from diagnosis. After the initial shock of diagnosis (and asking the doctor twice if he was SURE) wore off, the panic began to set in. Not just "fear", PANIC. I couldn't sleep - my family doctor (she sent me for follow up and knew what was going on) set me up with a "cocktail" for bedtimes to keep the monsters away. Before I started taking a Xanax and an Ambien before bed, I had many, many terrifying dreams of my death. I was worried about all the things I would leave undone and where I would "go" when I died - since there is no real tour guide (that I know of) for the afterlife...

I was waiting for surgery - I was actually called the night before the doctor was available to operate and had been anxiously awaiting that call for two weeks. Two aggravating weeks of getting up and going to work and trying to pretend everything was all right...

After surgery and getting home, I had those really terrifying dreams again. In fact, I had them in the daytime, even when I wasn't sleeping. The cancer was ruling my world.

When it was time for radiation, my husband took me to every appointment. I probably would have gone on my own, but I don't know...he's the one that made sure I had the appointments I needed, took care of talking to people I really did not want to talk to and made sure someone was with me at all times (something I both loved and hated him for - it's complicated).

My thought? Your mother has more than she can handle. Make the appointments for her and get her there (or have her caregiver take her). She watched the whole thing play out five years ago, she seems resigned to that fate. She doesn't have to be, but she needs to snap out of her pity party while the decisions are still IN her hands (if one waits too long at a crossroads to make a decision, the decision is made for them). Start pushing. So she's abusive and it hurts you - it also hurts you to do nothing. (Hey, cut off the cable to her room, she'll come out - works for teenagers, remember?)

She lives with you. I'm not sure how it was handled when the hemodialysis stuff was being taken care of. Did she do all the appointments, arrange for transportation, etc., or did someone else do all that? I think she's emotionally overwhelmed and needs someone to take charge. I don't think you are "okay" with letting her lock herself up in her room for the rest of her life - no matter how long it is. Make a deal with her, find a good point to get her to and have her re-evaluate how she feels at that time - be it radiation, chemo, whatever. If she truly feels worse and wants to quit then, fine, you tried and so did she...but if she's feeling better, she may continue and fight to live. You're her daughter, use whatever you have to motivate her (fear of cutting off cable?).

...and seek some counseling for yourself, as well. This ride isn't "free" for the caregiver, either.

Best of luck,

Becky

[elnodel]

Dear Erin,

I want to second Becky's advice -- especially after going through this with her husband and fighting off breast cancer herself, she's in way over her head. I know that I've had to take the active part myself in Len's care; sometimes it makes me feel really pushy but I know I have to do it or it won't get done. I've developed a thick skin, or tried to, when he objects (which, now, is rare). However uncomfortable you may feel about it, you need to act now, to prevent yourself from regretting not doing anything later on. Since your mom lives with you, it's a natural thing for you to take over and become the advocate/secretary/daily nag for her.

And do try to avail yourself of some counseling/support for yourself. IT's so difficult for the caregiver, especially when you're having to fight the patient as well as the cancer.

I know it sounds easier than it will be. But somehow you have to give it a try. Keep in touch with us all and let us back you up!

Ellen

[Don Wood]

Hi, Erin. I agree that Becky has given you good advice. Your mom is in depression and overwhelmed. It will take effort to get her out of it because she can't do it alone. My wife was very depressed for the first 9 or 10 months of her diagnosis and treatment. She was depressed at having lung cancer, she was depressed at having to go through chemo and radiation and all the side effects she had to put up with, she was depressed that she couldn't go and do like she always has.

Every patient of life-threatening diesease needs an advocate -- someone to do for them what they can't do for themselves. This means encouraging them to eat and drink properly (by the way, we discovered that every two hours to eat is not only better -- more chance of eating enough -- but it also keeps something in the stomach and helps minimize nausea), encouraging them to take their meds, encouraging them to get interested in something (besides watching TV all day) that will take their mids off the disease and give them something constructive to do. The advocate also runs interference for them in doctor visits, tests, etc., so they don't have to put up with the system until they feel like it.

Hang in there. Hang onto the hope. Tell your mom that my wife is Stage IV, was given 9 months and she is now 27 months out and expecting many more. Blessings to you and Mom. Don