Ok....not sure where to start, what to say or what to do next. I am probably overeacting to some extent but upset and infuriated all the same.
Yesterday I came home from the shore after taking my little girl and two of her friends with us. It was an enjoyable time, though, I was very preoccupied about what may have been happening at home. My older daughter stayed behind to take care of mom, if she needed her, and also to attend a family friends child's graduation party on Saturday night. From what I've heard from several people, mom was 'chain smoking'. I don't think she should be around smoke, let alone smoke or continue to do so. I was upset and disappointed but I wasn't there to babysit.
When I got home yesterday, I was getting ready to have dinner out with Ed and the girls when my house phone rang. It was my mom, she sounded extremely upset and scared. She was calling from the ccc, she couldn't find my dad, who took her, and he had her phone, purse and pain meds. I called his cell phone over and over again, I callled her her's about the same number of times. I called the parking tower we always use, the officer there didn't see the car, mom said it was parked on street level. Mom called back and said she was going to walk around and look for him. I can't tell you how scared I was. I asked her to stay put but she said she was just going to look around and would call me back. I told her I would come down. I'm not sure if I am over the top with worries...but I drove down 95 like an idiot, calling their numbers the entire time. I finally got to the parking garage, drove down to the basement level and found mom's car--I was scared to look inside in case dad was in there and something had happened. He wasn't, so I parked my car and ran across to the hospital. I knew he wasn't in as a patient, because I had called on my way down, just in case. I was so scared and upset. I finally get to the front doors to walk in and I see my parents standing there looking at each other, kind of upset, but ok all the same. Suddenly, my dad looks out at me, he has the strangest expression on his face! My mom looks over and she looks blank. I go in and feel my fury brewing. You would have thought someone would have looked at their phone and decided to call me....but no. I think my mom forgot she callled me. My dad asked me, "What the hell are you doing here?" Not in a mean tone, more shock. At this point I look at my mom and she looks annoyed. She starts going off how she could find himn herself...this is after the phone calls where she is hysterical. I knew if I opened my mouth I would have had verbal diarrhea everywhere. I just said I was glad he was ok, I had to leave. They both asked me why, I just said because I was supposed to be out to dinner with the kids because it was my girls b-day. I turned and walked away. I could see their reflection in the glass, I could see they were agitated, and I didn't care then about their feelings. My father the entire time was sitting in the seats by the nurses station, only patients on the beds ever really sit there. I don't know how they missed one another.
I got in the car, flew back home, stopped for ice cream cake and when I pulled in my dad said something to the extent that I didn't get anywhere fast. I wanted to throw the ice cream cake at him. My mom suddenly starts in on me.
Apparently I have been taking over on everything. She doesn't want help from me. She wished she didn't have to look at me.
That was last night, I don't think she recalled any of this today.
When she woke up this morning, I walked into her room and asked her if there was anythign special she wanted to wear. She said she wanted to die. I dont' know what came over me but I said if you contiue smoking them, meaning her cigarette that was in her mouth, you'll get your wish. I've talked to her again and again about smoking. Aside from how bad it is for her, I have bad asthma and it is really bothering me to breathe around it. I also told her that I imagine that the doctors may tell her to stop treatment because it could be considered a waste of time. I have read about all the danger she is inflicting on herself. She is so angry with me. The cherry topper today was she couldn't find her 'brick or stones'....I asked, didn't want to, but did anyway....what are you talking about? She said she was carrying either a piece of brick in her pocket or stones so they don't know how much weight she has lost. I said that was the most assinine comment I could imagine hearing. I am beside myself. I went to the pharmacy to pick up her thrush medicine and broke down to the pharmacist. Sh said I should ask my doc for an increase in my effexor, and xanax. She said I am not alone, but I certainly feel like I am. Most of all, I am upset for my behavior and for my mom's comments about carrying stones, bricks....I am still waiting to laugh about yesterday and for the comments today....just don'tthink I ever will.
Is it normal to be this angry? I can't tell you how upset I am.
As usual, thanks for letting me vent.

also....
when she has the brachetherapy, don't they automatically give her a feeding tube?

Hi, Donna,

Sometimes it may seem as if loved ones care more about the treatment than the one who is going through it. My sister-in-law was diagnosed with lung cancer when she was 42 and died about two years later. She had been a heavy smoker for years and as it turns out- smoked throughout her entire treatment including after she appeared to go into remission. My brother has never smoked and he tried for years to get her to stop but gave up long before she was diagnosed with cancer. Her three children tried to get her to stop (pre-cancer) and were devastated when they "caught" her smoking during treatment. She smoked the last weeks of her life as well. I have thought about this so many times- how hurt and angry her family was because they felt that she valued/enjoyed smoking and her right to smoke over their concerns for her and her caring for them. She and I talked once about her smoking right after she was diagnosed and she said she expected cigarettes would likely shorten her life (e.g., heart attack but not cancer) but was thinking more in terms of dying at 80 instead of 85 (NEVER expected such dire consequences in her early 40's). Of course I sort of "get" all of the psychological and physical things that go with smoking - the routine, doing something one wants to do whether others agree or not, the soothing aspects it takes on which certainly all come out during times of stress and fear. But I have to say I often wondered why she continued to smoke once diagnosed and especially when she appeared to be in remission. I don't know the answer but I've gone back and forth between her never really believing that she was going to make it anyway and her believing that because she was so young and looked healthy she would beat the cancer regardless of whether she continued to smoke.

I think that whether it's about smoking or something else, the individual with the cancer needs to care about and believe in their treatment at least as much or more than their loved ones. There is only so much we can do as caregivers if we are trying to promote something that the patient doesn't want or doesn't think he or she can do. I don't mean on occasion that we don't push things but in an overall sense.

Hi Donna,

WOW, I wish I could spend a few hours with you talking about this, because it sounds like you need that more than anything.

I can see this situation from both sides, since your mom is my mothers age AND I was a mother while going through the same treatments.

From a daughters perspective: I would feel just like you do right now, which is angry as hell. How can you NOT feel that way? But just know that the love you feel for her will overpower the anger eventually and your feelings will settle around. It may not be a bad idea for you to look into making your medication stronger. I can't even imagine that your mother is still smoking? I would think it would HURT her mouth? It probably will eventually so maybe that will make her stop. You should matter of fact tell her that the treatments are pretty much a waste of time if she keeps smoking, so why bother?

From a mothers perspective: I know how scared your mother is right now, I've been there. And I was there when I was 20 years younger than she is and still had a 9,11 and 12 year old at home. Don't feel that your mother doesn't love you or appreciate you, she does Donna. She's not herself right now. Although I wouldn't have reacted the way she is (in fact, I didn't react as she is) we all behave differently when put in this type of horrific situation. Are her pain meds altering her state at all?

I wish you well with this Donna. I remember one time when I had like a kind of "breakdown" and my then 21 year old walked around and around the block with me at 3am.............I was mean, nasty and hateful acting and the girl just kept walking with me,not saying a word. She kept squeezing my shoulder and telling me to "let it all out". Boy did I! Your moms behavior is going to yo-yo alot right now so be prepared.

The smoking though, that has to stop although I don't know how you can go about achieving that. Have you told her doctors?
Also, TELL her radiation department what she is doing with the rocks and stones. I can't believe she doesn't have a PEG in already. I would try to get her one now.

Take care,
Minnie

Donna - I wish I could be there with you, too! You had every right to be angry and to react as you did. I agree with Minnie in that you should tell her radiation department about the smoking and the rocks and stones. I'm sure they will consider all their efforts a waste of time if she continues to smoke. They could be spending their time on someone who really wants to be treated. My mother smoked and drank all her life. When I was 20, I couldn't take the smoke and the constant headaches it was giving me so I left home. My mother died of emphesema. I'll bet that if you mention the smoking and the rocks to the doctors, they may have some suggestions. Maybe a nicotine patch or even a fake one? You also need to think about your own health, too. Being around smoke is certainly not good especially for someone with asthma. Sometimes the caregiver needs to think about the caregiver or their caregiving will suffer. So, Donna - do something nice for yourself, right now.

I've been having a day of it all-that's for sure!
Thanks for responding, different, or even same perspectives help a lot.
To answer a few of your questions...
yes, her meds have changed her personality. I can usually pull her around and out of a mood but as of late, she is becoming more and more stressed. I find it difficult to be a whipping post, but I seem to set myself up for it....and it seems to get her to let it out and then she sleeps-and cries. Lately when she wakes up she has no idea where she is. It's upsetting to her and unsettling to me.
Sophie, I had an aunt, who was only five yrs older than me who died from lung and brain cancer. She smoked winstons or marlboros and pot everyday. for years! I remember thinking to myself, I am watching a beautiful woman turn into someone she said looked like tales from the crypt, and I recall thinking, wow, this is horrible, this will stop my family from smoking. It didn't. Everyone says it's an addiction.
I don't know if mom doesn't beleive that she won't make it through all of this. I guess I should ask her. Maybe that would help.
Tonight my dad went up to try to get her to eat something and she started reaching for her cigs instead, he yelled at her, and she blew up. I went up a short time later and saw tobacco all over her light bedspread. I was going to change it, she told me to leave it.
Minnie and Anne-Marie-I wish you guys could be here too. I feel like I know both of you and quite honestly, don't know what I would have done without your friendships.
Today I didn't really do anything. It's been a hairy day for me. Did I tell you that my cousin was killed on Saturday on a motorcycle accident? I called my uncle in GA and spoke with him for a while...felt good to be able to help someone and share love with them in a time like that. I wish I could be there for the services but it isn't possible. I sent a huge spray of bright yellow flowers....seemed fitting. My Uncle reminds me so much of my dad, they are two years apart but could have been twins. I wonder if my dad's parents realize what a wonderful job they did raising such loving children. I with these relatives lived closer. I have tow uncles who are local, mom's brothers, one is older and has been through hell with prostate cancer. He doesn't call, doesn't want to disturb mom. >>>honestly, don't know if I but inot that. My other uncle is only 7yrs older than me and he hasn't spoke with anyone since Lauren died almost 7 yrs ago. I've treid calling to tell him about my mom but no one ever answers.
I tried calling my doctors office today, no one answered-very strange. Will call again tmorrow.
Thanks for always being here. Have a nice night.

Donna,

What a tremendous amount of stress you are under, it seems more than one can shoulder alone.

I don't get the smoking thing, doesn't that hurt her mouth? How frustrating for you to witness that when you are trying so hard to get her better.

And, how incredibly sad that your cousin died over the weekend from the accident.

I'm so sorry things are difficult for you right now. Will send many prayers your way for you and your family!

Dear Donna, It goes without saying that your Mom is angry, hurting and lashing out. That's the way it is with this cancer and the pain,fear and frustration the patient endures. I would softly suggest to you that you admit to hitting a low point as a caregiver right now! Look in the mirror and say," O.K.,this is the hardest thing I have ever done and I don't know how I'm gonna get through it". Then think - really take some time to think and seperate - what you can and can't do for the duration of her treatment. There are many things going on here that are NOT in your control. That is a very hard thing to deal with. And your Mom is dealing in her own way [whether you approve or not] But you have a family of your own and yourself to look after. It sounds like your Mom is in a self-distructive mode, but you do not need to go that route with her. Wishing you well, Amy in the Ozarks

Good Morning Margaret and Amy,
Today is better...well, for me anyway. I crashed yesterday, I was wondering when that was going to happen. I do feel better now-though, I can't really say why. I think I came to the point that I can't control everything. Although I think I know what is best, I can't make others do anything about it.
Mom hasn't had a cigarette since yesterday afternoon when my dad went up and yelled at her. He said that it was hurting all of us watching her kill herself. She 'spazzed out' (as my kids say) but she didn't light up.
I have decided that today while she is in treatment that I am going to try and find her rad-onc and speak with him for a few minutes. I really want her on an anti-depressant, she needs it. She doesn't want it, I think she's too far into it to think clearly.
Amy-I did exactly what you said about making decisions about what I can and can't do. I wish I could say my family were more reliable, but honestly, they are not.
I have to run and gas up her car. I'll let you friends know how I make out today....thanks for being here for me.
Donna

I totally agree with what Amy says and such good advice for any sitution we find ourselves in! Just being able to realize what we can or cannot do or control, and acting on the things we CAN do helps us feel more in control and could lessen the stress. We can only change ourselves but sometimes in doing that, others are influenced positively. There are so many ups and downs in this cancer roller-coaster. I do hope things start going better for you very soon.

Mom only has 19 more tx's to go. She gets really sore when I say only... Still, less than what she had to face to begin with.
Today when she went back for treatment, I went to the rn's station to talk to them about antidepressant for mom. They said they would talk to my mom when she came out. Sure enough, we were geting ready to leave and they called us over. My mom handled herself a lot better with them than she would have with me. When the nurse said they would help with clarity...mom said she didnt' know if she wanted clarity. She embarrassedme by going off about what state the house is in, laundry, and food plans. I cleaned the house before I took off for the weekend, not really cleaned but did have everything out away, vaccuumed and dusted. I spent over 3 hrs in the kitchen a few wks ago on hands and knees-no one cares if they spill or drop something. I'm finding it difficult to be ok with wiping up after adults constantly. Laundry has always been an issue. Food is something new. She can't eat or won't really try...she's become extremely fussy. I felt like such an idiot sitting there, especially when I started questioning myself. I honestly don't get much help. My parents are the biggest mess makers and yet she complained that it was my kids. They are following other patterns laid out before them. I'm going to talk to them about it.
I feel guilty as hell. I honestly feel like I don't want to put up with this any longer. I've been bending over backwards, not working since mid April and being treated like a servant. I've had it. I want to run away....even when I do escape I feel terrible about it.
The garden we were working on in the beginning is dead...that is my fault too. She didn't like where I was plainting things, I aasked her where she wanted them, she got ticked off and went to her room-never to tell me.
I'm not expecting to have fun, but it would be nice to be appreciated somehow.
I sound like a big baby, I'm ashamed. I just don't know what to do wtih myself.
I hate how this is all going....it's getting worse and her attitude is effecting everyone.

I just wanted to apologize....I know better than to have a pity party for myself. I just seem to get beside myself sometimes.
Hope everyone has a nice evening.

Donna
What you are feeling is completely normal...you have nothing to apologize for... it all just gets a bit overwhelming at times doesn`t it.
Hang in there..you are doing a great job, you will never have to say "I wish I had or I should have done". You are doing all you can.
Marica

Donna,

You have so much on your plate...I think you are in the right place to let it out.

Taking care of my husband (and getting him to treatment daily),raising my kids and trying to stay on top of my business has had me in an constant state of exhaustion (and sometimes tears).

My situation feels like a cake walk compared to yours. You have added two more people into your home, you have a less than compliant patient and you have a preteen and a teen. (I have a 12 and 13 year old).

I have been attempting to make the summer "normal" for my kids and also trying to get them to help around the house a little more (the latter part isn't working so well). My husband has been very compliant as a patient (and, yet, seeing him suffering has been trying).

You have multitudes more going on in your environment...and, you just lost a relative to an accident. That's just so much.

I feel blessed that I have had an abundance of help from neighbors and friends. I'm wondering if you are not getting as much help because you are taking care of a parent vs. a spouse.

Although, if anyone is offering to help...with meals, lawn care, etc...don't turn it down, you need the help. (That was a hard revelation for me, but every bit of help has been so appreciated)

Do you have sisters or brothers who can help and give you a little break? Can your father handle getting your mom to treatments on days when you aren't consulting with her doctors?

We're reaching the home stretch and I am finally getting better at accepting and sometimes asking for help.

And, I just started to give myself an hour in the evening to walk. That has made a huge difference.

You are going through tough stuff. Please don't stop posting.

Donna,

Your parents are to old to change and I suspect their actions are not unusual or unexpected so I'm sorry but I don't get the feeling that your parents will ever appreciate, fully or not, your extremely valuable contributions. You're just going to have to accept that. Not saying that's going to be easy but I feel the sooner you stop looking (hoping) for thanks or them to change, the quicker you can get on with your life. I just hope your children can get through this without to much damage.

Their loss, not yours.

You have every right to feel the way you feel. I'm sorry, but your mother is being unreasonable and selfish, yes selfish and hurtful to you. My husband has been through hell with this dreaded disease. He is permanently on a PEG and when he talks people think he is drunk because of the surgery and this really hurts him. He was in pain during radiation and chemo and surgery and now he can't ever eat again. But, he never ever treated me the way your Mom is treating you. Is she getting some counseling, and are you getting counseling or at least going to a support group. There is help out there for you. Sometimes we have to be tough and let them know when they are being hurtful and when it is all too much for us. That is OK. I'm sorry, but this post really hit a nerve with me. My husband is fighting so desperately to survive. Now he is being tested next week for a spot in his lungs. I read about how your Mom is treating you and herself, and I just get angry. It is so unfair to you and your family. There is nothing fair about this disease anyway.

Donna - You are feeling and experiencing what a lot of us have, and it's not a pity party to have some compassion for yourself! I felt like a maid, too at times. I actually did run away, once - got in my car and drove home, crying all the wayl Of course, I felt so guilty, but things did get better after that. And about your Mom's reaction to "only xx more treatments" My son had the same irritated reaction but when we got a lot closer to the end of Tx, he started mentioning the count-down numbers himself, so maybe your Mom will feel more positive as time goes on. Also, don't worry about the garden - that's just STUFF and the fact that it's dead proves what an excellent caregiver you've been. "People before things" is my motto. Margaret has such good ideas above and going back to what Amy said about thinking what you can control, maybe you could see what things you could eliminate as well as get some help with the things you don't eliminate. It really does help to get some time for yourself. When anyone came over to see my son, I would use the opportunity to leave the house and do stuff for me. I told him I thought he should have some exclusive time with his friends, but it did me as much good as it did him. You shouldn't have to pick up after adults (unless they are really incapacitated). I still go over to my son's house a couple of times a week to do laundry and other chores and I was planning to show his 6 yr old daughter how to do laundry (of course making it seem like a privelege) but she can't reach the "On" button yet so I guess I'll hold off for a while. Certainly anyone over 10 (male or female) can do their own laundry. It's not hard and all the machines come with instructions. Anyway, Donna - you are doing a super human job and you do need a break. You've already done such good things. Killing the garden was good - it gives you one less thing to work on. Maybe you could get someone to go see a funny movie with you - or just go out for ice cream. Let us know what happens and how many things you were able to eliminate.

Dear Donna, here's a idea- why don't you go back to work and hire someone to be at home with them during the day? Amy

Hello,
Thanks for helping me. I feel bad sometimes because everythign is onesided-my side. What I write is true, but I always have a nagging suspicion that I am biased-which of course I am. I spoke with my kids yesterday, they were wonderful. Jackie, my 17yr old, cleaned my parents bathroom, the back sunroom, had her boyfriend Joe cut the lawn, friont and back. Jessie, my 11yr old, dusted and cleaned up to the point she thought was great! I am just grateful for any help.
I spoke with my mom for about 2 hours this morning. She said she hates herself for the person she is turning into. She cried, it breaks my heart when she does. I feel I have placed an ugly face on a beautiful woman. My mother is the most kind and considerate person I have ever met. This person I am dealing with now, though I know it isn't her, it still hurts when she says and acts certain ways. Last night for example, she was in a 'bad place', dad was sitting with her, holding her and trrying to calm her fears. My neighbor Mary has moved back to her parents house, she is going through hell with an estranged husband-too much to write about to explain--anyway, she came walking down the street with her greyhound. I pulled her into the backyard for her to show my mom her dog-mom loves dogs. It was then that mary started tellingus how her husband wants to keep the dog, the dog belongs to their 8 yr old daughter. The husband was admitted to warminster hospital yesterday. He has kind of threatened Mary about the kid and the dog. My mom got up, walked upstairs, came back down with two sets of keys-one for the house, one for the shore house. She told Mary anytime she needed help, felt she needed a safe haven for her, her daughter or the dog, to just come in, regardless of what she herself(my mom) is going through. She has always been this way.
I am taking off for a week, leaving tmorrow with my kids, my nephew, and Ed. We are just heading to my parents pplace in Stone Harbor, NJ. I'll only be about 2hrs away, if needed. My sister will take care of mom for the week, it's her son I will have. She also has a baby girl, she'll be 2 in Sept-good therapy for mom. Dad is doing what he can, he's overwhelmed with fear and he's in agony because he can't make her better.
I have finally decided that I will do what absolutely needs to be done, do what I need for me, take my dogs for a walk in the evenings, and get together with friends-even if I don't think I will enjoy myself.
I don't know if I ever shared that my mom took care of my brother who was dying from AIDS, it was horrible-much like cancer, never knew what the beast was going to do next. She also was a part time caregiver to my aunt who died of lung/brain cancer...she is frightened, she has ideas of what could happen. She is frustrated because she is denied freedom from this illness. She'll get better. I'll try not to be so harsh about her and my family. We all are trying, in our own ways....even if that means not being the loved ones we can be.
Thanks for all the advice. Amy- as soon as mom gets through this I am running back to the office! I can't wait!!
Love,
Donna

Donna,

I think you are very hard on yourself. Of course, your mom is a wonderful person. You have made that clear in your previous posts and even if you hadn't, the fact that you are so compassionate and kind speaks volumes about her.

This is an awful cancer with no easy treatment path between the diagnosis and the cure. Between the treatments and the drugs, it's just not easy to feel or be yourself.

I am glad you are getting away and getting extra help. Keep asking for more and more help. It takes an amazing amount of energy to be a caregiver.

I find I get on edge easy...there's a lot to be edgey about. We're in the 6th week of treatment and I finally got smart enough (thanks to the relentless prodding of a neighbor) to get out and walk for an hour once a night.

And, it took me several weeks to not feel guilty about people wanting to help me and for me to accept the help.

Somehow, I felt like raising my family and taking care of my husband was my job and that if I couldn't do that, then I was failing. And, trying to stay on task with work...well, it's all just really hard and overwhelming when you are going through what you are with your mom.

Everyone is right, you have to take care of yourself.

And, you have to expect more of your kids. My kids are not pro-active and are asked to do very little in light of all that can be done, but what I do ask them to do, is now non-negotiable.

At first I cut them a lot of slack because their dad was sick, and then I started to get frustrated that they were not helpful...in fact, they were doing much to aggravate the household situation than to helping it.

Overall, I am not asking more of them than I would on a typical summer when I am working and they are home and playing all day...it's just that I think I messed up by easing up too much in the beginning.

And, with your mom, I do think the one battle to pick and win is to get her to stop smoking...no matter how ugly that gets.

Good luck,

Donna - I continue to be amazed at the wonderful caregiving job you are doing! Your kids sound pretty terrific - hope you told them so, too. Love and the people in your life are important. The rest is small stuff. Glad you will be taking some time for yourself.

Thanks.
I was so proud of my mom today; when she goes in for rad tx's she takes 1.5mg of ativan, today she only took 1.0mg. She was amazed at herself.
I am getting ready to go and fix her salmon for dinner. I've read that it's not good to eat that too often, but that is the one meal she really enjoys.
I just realized that i have nothing washed for our week away...ed said I should just bring down the dirty laundry and do it there...that's not a vacation-that's starting out with a chore! I want to go and unpack CLEAN clothes, make a delicious margarita and sit down and put my feet up!! That will work best for me.

Good job, Donna- enjoy your time away. Amy

Thanks Amy! I hope can relax, and not feel so damn guilty!! I told my mom that once she is through tx's and surgery, I will take her to the shore house and we can go to the beach and sit, collect shells, watch sunrises, sunsets....or sit at the house all day.

Donna - so glad to hear of your Mom's progress. You mentioned she only took 1.0mg of Ativan. I guess she's not taking any more stones and bricks, huh? Don't worry about the laundry, just take your swimsuit and a towel. Enjoy the beach!

Hi Anne-Marie!
She apparently takes her stones or bricks on Mondays, weigh in day. I've alerted my sister...so glad I'll be an hour away!

Ed will appreciate your idea of packing! He always says I should join overpackers anonymous!!

Hi Donna - When I told my son about the stones and bricks, he laughed out loud and said he wished he had thought of that! He was always very secretive when I asked him about his weight. I struggled between being a "hovering" Mom and realizing he should be in control of his own recovery. Unfortunately they RO people don't require weight checks to be in the nude.

When I was going through treatment I remember wearing extra clothes, so my weight loss would look less. My trick would have been discovered if I would of had to weigh in nude as Ann-Marie says.

I don't know why we do this, nor is there a sound reason for it now, all I can say is I wasn't thinking straight.

Tim

When I mentioned this to my husband he said don't think that didn't cross my mind. He would get so upset in the beginning when they would say your down 6 lbs this week. He would say to the nurse "you go through what I'm going through and then tell me..." LJ