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TELL US!!!!!!!!!!


shelliemacs

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Ok, this subject has been brought up a bit today. And Katie and Carleen got me thinking. Then the more I thought...the more I worried...and then got in a funk.

I am a caregiver, like KatieB and Carleen etc.... I am over the top with worry about my mom and if the cancer is dying, is it spreading, will she hit remission, is she is pain....things like that. :?:

I need her to tell me when she hurts, is sick, feels wrong, bad, good, sad...etc. I am crippled without this informatin. I cant mind read her or feel what she is feeling. I need imput from her. :roll:

How as caregivers can we get you patients to tell us whats wrong???? Why dont you tell us whats wrong??? Do you think we want to attend funerals. :evil: Do you think the problem will just go away. Maybe you think your putting us out....YOUR NOT!!!! :evil::twisted: Dangit I will spend my last breath to make my mom well again but if she wont meet me half way, what good am I! :x

I see she gets irritated with me and my daily 100 questions. Did you eat, are you in pain, does anything feel off. are you hot, are you cold....

BUT how can I keep on top of the problem and keep it as a chronic illness before it becomes a killer?

Please patients.....tell me what I as a caregive can say to you to make you tell us the little things that you dont think mean anything. Like for example this morning when I went to moms for my morning check...Something was wrong, I dont know what..I kept asking the routing questions. Then she looks at me with irritation and says "Nothing its just an off day" ok I know she is battling the cancer and I am not but what does "OFF" mean. Maybe just maybe I can do something or the doctor can do something to put the day back "ON"

URGGGGHHHHH

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Dear Shelly,

I am always so impressed with how much you love your Mom and how well you take care of her. You are something!

I wonder what your Mom is trying to communicate to you? As you know, we communicate with words, but also with actions, moods etc. If this were our conversation, and you were my daughter, I would be telling you that it really is just an "off day." I do have problems that have very little to do with the cancer.

You see, sometimes I want to forget I have cancer and I don't want to make every little problem I have into a metastasis. Yes, I'm frightened when I have a headache--has this gone to my brain? If I cough, is it back? I could go on and on.

When I get like this, my husband reminds me that I've just had an x-ray or a ct scan or whatever and he tells me not to worry. I think I would really get upset if he were the one who was freaking out over every little thing.

I think you understand what I'm saying. Let your Mother be the leader here. Ask her what she needs from you. This is a new phase of your relationship and you are both trying to understand the new give and take.

You are a wonderful daughter, Shelly. Relax and help your Mom. You are doing a good job.

Thinking of you and your Mom,

Ada

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Guest Tim'sKathy

Oh Shelly...

do I know this one !!!! Tim gets so angry with me for asking the questions...but I can't help myself. I worry so much about him and I don't want anything to get out of hand before they can catch it...

He says that with me around he cannot forget how sick he is, but I haven't come up with a way to stop...We have compromised for now and I get to ask once in the morning and once at night any questions that I have...and then it's off limits ...He has also promised to tell me if there IS anything wrong.

I know exactly where you are coming from on this one !!!

Kathy

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Shelly-

I know all about that too!! I ask my mom how she is, and if she says pretty good, I ask so whats off that only makes you pretty good. Whydidn't I get a Good? As Ada was saying she says she doesn't always want to talk or be surrounded by CANCER, she wants somewhat a normal resemblence of LBC. You are such a wonderful daughter. Just let mom have an off day, it might be emotions are off, or maybe she is just cranky? I hope this helps..You hang in there girl, we'll get our moms better!!!!

Rana

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Ada,

your right :oops: I get it when you say it. I probably am a constant that she has cancer. I tell myself every morning that I am not going to mention it today. But then somehow the first question slips out and then its like diarrhea of the mouth. But I promise you I will try harder to step back from the over actor that I am and wait for her to tell me.

kathy

It is so hard not to just want to grab them and hold on and squeeze the cancer out of them. I hadn't realized what I was doing until I read all of your responses. I am a cronic worrier and have been since me dad died when I was only 9 and fealt mom needed my protecting cause I was the "Tuff" kid. well I seem to have run steam roller over her now and am putting her needs and wants on the back burner as opposed to what makes me feel better.

Rana,

Doesn't it stink that we cant mind read?? Its horrible to watch moms and dads go through hell like this and NOT want to do something anything. Its a helpless feeling. I so wish every day she would say "I FEEL FANTASTIC" but I guess i would not feel that way either if I was the one undergoing the treatments.

your all right, I get it right now. Hopefully it will stay with me tomorrow. Mom kept telling me from 5-7 tonight "Go Home, I am fine" but would i listen....nope....I would not leave until my step dad came home and I knew she would not be alone.

I guess I am a work in progress.

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I get it too.

All dad wants to be is better...not quizzed or looked at with sadness or pitty. He told me today that I would make myself sick with worry over him.

"Don't worry too much baby," He said to me tonight as I left him.

"I worry too much because I love you too much." I told him back.

You're all right. Constantly worrying about cancer or making our lives revolve around cancer isn't good, but throw us a bone and we'll behave. We just want to help, feel like we're doing something, "proving" our love and worth-fullness and trying to be the best caregivers we can.

I won't regret anything I've done, the only thing I will regret is not getting 100% of the life my dad was meant to live.

Blessings to all and hugs all around.

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Guest bessb

Okay all you daughters and caregivers out there here goes. I have SCLC extensive and I have a daugher, two sons and a loving husband but I can't please all of them all of the time. I can't make every one feel better, I do hide some things from them because I can't stand the constant questions and worry I see in their faces, that just makes the cancer a bigger burden for all. I am smart enough to know when to call the doctor and when to ask questions and when to ask for help and I am sure your parents and significant others do too, as much as you love us it is very sad but you cannot save us, only God can do that and if it is something medically fixable, our doctors.

We know you love us and we know how much you care but sometimes you just have to back off and give us some space and breathing room. Sometimes we are just having a bad day, some days I just cry for no reason but no one knows about it, if they did I would have all of them asking whats wrong and I couldn't tell them because I don't know, I just feel like crying. It is very painful for me to see how much they are suffering, it breaks my heart in pieces, I am only one person and I don't want them to suffer. If God wants me I have no say in the matter, it is in his hands and I have put my faith in him but I worry about them all the time. So you see my friends the worry is two sided, we worry about you while you are worrying about us. As a wife and mother I only want what is best for my husband and family, I don't want them to have to bear this burden, I would give anything in the world if they didn't have to but I can't fix that either. I can only try and ease the way for them and make my dark hours be dark just for me alone.

We have today and we have time and that is more than many people are given and we always have hope, that is something no one can take from us. And best of all we have the gift of this wonderful message board where we can come and share and vent and let it all out and get encouragement and prayers and people who care. God bless you for being such a wonderful daughter, your mom is blessed.

Bess B

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OK, I really do get it, even though I am a control-freak who thinks I can make everything better if I worry and fret and try to keep things moving and get things done. :roll: I'm not always like that at all. Many days will go by that I just sit and talk with my dad about my new job, the train commute, things inthe news, he tells me stories of his younger days and old friends, etc... Many days go by without the mention of L/C...it's easy to do when things are going ok...but when they are off, when Dad has a bad day - or like right now- truely sick---that's when the focus needs to totally be on L/C...getting over the hurdle, fixing the problems that can be fixed so that wellness (or a semblence of it) comes to fruition.

I completely agree with Bess. It is a heavy burden for patients to think that not only do you have to deal with L/C, you worry about your loved ones dealing with it, but it is a two way street and I would be neglegent if I didn't try to take care and love my dad the best way I know how and by doing everything I can do.

Tell us when you want to be left alone, tell us to back off if you feel crowded or need a day to be angry, sad or plain sick of being sick. I know us caregivers will understand and accomodate.

My dad hasn't told me that, thankfully. He has enough alone time when my mom runs errands-is in the garden, etc..and I am at work - . He focuses on me 100% when I come over and hangs on my every word...something he hasn't done or had time for since I was a small girl. It's horrible that something this good had to come from a L/C diagnosis.

Bess> Every time I catch myself hovering or hen-pecking my dad in the future, I will think about your post. It's opened my eyes and even though he would never complain or even say anything - act happy and grateful-, I will watch myself a little more. I couldn't stand it if all my "helping" and "trying" and worrying made my dad feel bad.

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Shelly, Thanks for asking the question.

Dear Bess,

100 times THANK YOU !!!!!

Bess, you so wonderfully put everything into perspective for me. I was only able to care for my mom for a very short time and I have had many questions that I never got an answer to. My mom has always been a great protector of everyone in my family. She spoke very little about having lung cancer, and she was a "good sport" through everything she went through. She did tell me a couple of times that she was scared but nothing else about how she was feeling about any of it.

Hind site, I look back and could kick myself for not pressing her, getting her to tell me more about how she was feeling. I think that I would have been able to comfort her more had I known that she was protecting me from her pain and feeling that she might be a burden on me. At the time I was respecting her wishes of not crying in front of her. In my own way I was protecting her of my own pain. I knew that I couldn't change her dx. as mush as I wished it away. I could only support her as a caregiver and her daughter.

As I read your post I could hear my mom telling me this is how she felt too. I know she worried very much about us. One of the times I remember her smiling the most is when she was in the hosp. and one of her cute nurses insisted that we eat with her. They brought both me and my dad a tray of food just like mom's. We were worried about her eating and she was worried about us.

I am going to print your post so when I wonder again why she didn't tell me more when she was sick, I can read it again, and again. You have helped us all see this terriable disease through the eyes of the patient and you spoke so honestly. You must really care about us, the members/caregivers of this board. I wanted to pm you but couldn't because of your guest statice. Thanks agin Bess.

May God Bless All of You and Your Families,

((((((((((((((((((HUGS))))))))))))))))) Shelly

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Thank you Bess, between you and Ada, the light has turned on in the attic of my brain.

I took your advice this morning and worked the CWD program (cronic worry disorder) I brought mom a Coolata fron Dunkin Donuts cause she absolutely loves them and talked about everything BUT lung cancer. No twenty questions, no feeling her, pinching her (katieB hydration test) nothing. I talked gossip with her and she visibly looked relieved. I told her I am taking her out for Pizza with me saturday since its my anniversary with my husband but he has to work and Were gonna eat and sit on the lake and gossip more. especially about my mother in law cause thats always entertainment to her. :lol:

Thank You,

I am enlightened

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Bessb

Wow...now I think I understand, and Now I will DO MY BEST to back off. I was over cleaning her house last night, and grilled her about everything, but when I go over tonight to shop...guess what....I am going not to ask anything, and she even has a Dr. appt. this morning, and I will wait for them to tell me anything. (THAT WILL BE HARD)!!!!111

I get it now.

Rana

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Thank you all for your kind words. OF course you have to bear in mind that those are my thoughts as a patient, your parents or Significant Others may have different views, I can only speak for myself and what works for me.

If I can offer one word that means something to someone on this board I am grateful for that. This board has given so much to me, more than you will ever know that I just want to help others and give back, it keeps me going every day. I know I will not be judged on here and no one will be burdened by my words and I won't cause any one to worry and for that I am thankful. I have to get some advice from Rick about signing on, every time I try to do it I can only sign on as a guest, I would welcome PM messages from all as soon as Rick can help me figure it out, I am computer illiterate and I know he is a whiz, Rick or Katie can you hear me?

Love and Prayers

Bess B

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Shellie,

I know exactly what you are talking about, my mom told me yesterday that she has a pain in her breast and thinks now she can feel a lump. But my mom is not a very "in your face" kind of person with the doctor. That is the role I have to take for her. By the time I left her house, I had already asked/told her 10 times that she MUST bring this up with her doctor and that I will be calling him too. I got the..."yes, andrea". My mom is the type of person to minimize any symptoms she has and I have such a difficult time getting her to speak up and tell me things. I know she doesn't want to worry me. I feel out of control, because I don't know exactly what she is feeling and I can't fix it if I don't know. I have conversations with my mom to tell her how I need to know things, so that we can get them taken care of. I literally had to bug her each day to get her to see a doctor for a second opinion.

At the same time, I have to respect my mom and her space. I am sure she doesn't need me in her face each day continuously reminding her she has cancer. She has told me that she enjoys her alone time to rest, read, knit, etc. I always tell her that I am there for her (and she knows it) and will do ANYTHING in my power to help her beat this monster, but I need her to proactive too...and that she is. She just isn't quite as aggressive as me. :) Everyone has off days and that doesn't mean anything is wrong. My mom will tell me she is having an off day or is tired and I take it for what it means.

I wish I had the power to take away all my mom's pains and ease all her fears. But I focus on the things I truly can provide her a warm hug, an ear to listen, a source of unconditional love, a safe harbor for her to come to and an outlet from her cancer.

You seem like an amazing daughter and I am sure your mom knows how very much you love her. Talk to her openly about your fears and encourage her to talk to you about yours. I am sure as a parental figure she doesn't want to worry you too. I wish you all the best.

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Bess,

You and Ada have gotten through to me, FINIALLY :roll: my "I am the only one who knows how to take care of mom" attitude will take a back seat. Its not about me...I get that now. Its her and her disease. I was over compensating because of how it made me feel. I dred the thought of loosing her. It just feels like a bomb going off in my chest where my heart is to think she isn't going to be here one day.

BUT I realize I was too much. I am always on her about eating. sleeping, taking her meds on time, telling me everything down to the smallest detail. I went into panic mode if her nose itched thinking "GOD THE CANCER IS IN HER NOSE NOW" but I am definitely going to give the CWDWP a try (Cornic Worry Disease Withdrawl Program)

Now this could cave in any moment depending on if she is haveing a bad & sick day, instead of just a bad day. BUT I will get back on the program as soon as I realize I am slipping off.

Adnrea,

how do you think we get through. My mom was diagonosed just before your mom in February and to be honest these past 5 months have been the slowest and fastest of my life. Slow to get the cancer gone, fast that her time could be wearing down.

I want time to stop. I want to go to medical school and become an ONC> now and cure everyone.

ok, program now enacted....

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Well, I am either blessed or cursed -- I haven't decided yet which it is. Perhaps it is sometimes one, and then another. My wife tells me just about everything, so I pretty much know where she is at all times. OUr priest told my wife she needed to get a lay minister she could talk to, because she couldn't tell me everything -- that I would not be able to handle it, or not want to hear it (typical of some males). She looked puzzled at the priest and said, "I don't understand, because I pretty much tell Don everything." And she does. Now, it is hard on the caregiver to hear all that, and one does have to be able to hear all that and not go bonkers. That is probably the main reason I also have a lay minister working with me. So if they tell you everything, it is a blessing and a curse; and if they don't tell you everything, it's a blessing and a curse! I am just pleased that she feels that comfortable that she can tell me so much. I just have to emotionally take care of myself, with the help of others, so I can let her do that. Sometimes, I want to run screaming, but I hang in there. Of course, I do blow off steam around her now and then, so she knows I'm okay, too. What a world this cancer place is, huh? Don

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Shellie,

I am actually not sure how I get through this. It is weird, because after the diagnosis I have discovered strength I never knew I possessed. When I say that my mom is my best friend, that is no exaggeration. My husband always jokes with me, because I have always, and still do, talked to her about 5 times a day, we leave 15 minutes away, and I see her at least 4 to 5 times a week. She was there in the delivery room when my daughter was born and we would go on outings all the time. In March when she was diagnosed, when I say my world stopped spinning, it literally did. I am/was so angry. My mom should be enjoying her granddaughter and instead she has to battle for her life. I am so resentful when I see grandmas out with their grandchildren and my mom is not able to do that right now. I am so thankful for my daughter, because she is one of the main reasons I keep going everyday. But at the same time my mom is a big influence of where I get my strength. She would never want me to be moping around. I could go on and on. But some days I want to bury my head in the sand and pretend all is okay. I hate this damn disease!!!!! :evil:

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Great post, BessB.

When I was in treatment, each family member would call nightly to see how I was. Friends dropped over and I got emails by the score.

I appreciated all of this very much. My wife instinctively knew that if I needed her to do something, I would ask her. If I felt something wrong, I would tell her. And I did.

Somedays, I wuld have her get the phone/door and tell them I was resting. I just got tired of talking about cancer and wanted to be as normal as possible. When I was ready to talk about it, it was in a positive way to reassure people, even if I din;t feel so hot.

Caregivers, we know you love us and care very deeply. I understand how frustrating it is for you to not be able to wave a magic wand and make us better, but we are going through this for a reason. We love you for loving us, but we just want to be as normal as possible.

God Bless!

Rocco

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