Jump to content

D&TM

Members
  • Posts

    14
  • Joined

  • Last visited

Profile Information

  • Country
    USA
  1. Judy, my mom has been very lucky & the baking soda wash has helped her. But, we were told that some patients find licorice to help. There's something in the compound that helps coat & heal the mucous cells in the mouth?! On another note I am sorry for your struggles. Your words of encouragement really helped me alot when I started this journey with my mom & for that I am eternally grateful. I only wish I could give some of that encouragement back to you. But, I feel the only thing I can do is send you my well wishes & let you know you are thought about regularly. Best wishes D&tm
  2. Thank you all so much. It helps tremendously to hear this from other patients. While it breaks my heart to hear about how it feels inside at least I can just accept it and let her do what she needs to without trying too hard or worrying to much. I am truly sorry that you all had to suffer & wish everyone peace & love.
  3. Ok, I have previously posted how upset I am over my siblings not pitching in on the care for my mom. Now, I have just accepted the role as primary caregiver & just try to savor our times together. I now am confused on my moms behavior... She is rejecting anyones help but mine. I think it's her way of being passive aggressive in saying, " screw you! You are all so busy with your own lives & it's such a bother to come, then DON'T bother!" I think she doesn't want to feel like she's a burden to anyone & maybe I'm the only one she doesn't feel like one with? Also, she says that she's had her little pity parties for herself, but they don't last long before she reminds herself how lucky she is to have the support & love & that her side effects are minimal compared to what they could be. However, she doesn't do much. She is basically only leaving her house if she has a Dr appt. I can't get her to even do a short trip to a local dollar store or grocery store. She says she's just not up to it. My question is this: does the chemo really make you that exhausted that just getting in & out of a car completely drains you? Is she so tired because she's not doing anything or is she not doing anything because she's so tired? She's such a strong woman & I hear her tell people on the phone that she's "fine" even when she's not. I even catch her lying to her Dr & nurses about the real way she's been feeling. So, I don't trust her when I'm not there to tell me how she's really feeling. I'm concerned that she's hiding a lot more than I know and that she's more sick than shes letting on. She even passed up going to my sisters house to just hang while her (moms) granddaughter gave birth to her great granddaughter! I would've thought that would've been something she just wouldn't have wanted to miss. I say hang at the house because we all knew staying at the hospital for hours during the labor would've been to much. But thought that once baby was here she would've been close enough to go on over to see the baby! Mom told us she just wasn't up to it. That she was "too tired"! Even though she sounded so excited talking to me earlier in the day about going. I just am not sure if she's depressed & that's why she's not leaving her house or if she's hiding something more serious?! Please tell me if those of you who are patients can relate to her tiredness or if it seems like my moms is a bit excessive. I would like to mention it to her Dr. But don't want to make mom feel badly about it; as if I'm calling her lazy or a liar etc. Any thoughts on this would really help clear my mind. Thanks
  4. Ok I attempted to resend the previous PM. Says it went. Let me know if still not received. Thanx
  5. I did figure out the PM deal & sent you one. Not sure if I did it correctly because haven't seen a response from you on it. So, if you didn't get it let me know & I'll try my hand at it again.
  6. Although I do appreciate all the advice. I am not comfortable going on anti- anxiety meds. I have used them in the past and I hate the way they numb you to EVERYTHING! Plus, I feel like I need to be as alert and sharp as possible to care for my mom. I need to be able to correspond with the dr's and the other things I help her with. So, other than maybe trying some sleep aid when I am not with her I just don't wanna risk the side effects. Thanks though seriously!
  7. I've only been dealing with my moms diagnosis for a little more than two months, but I find it consumes my every thought. I try distracting myself with my other obligations and priorities, but it just keeps creeping back into my thoughts. I find the "what ifs" and how long questions constantly consume me. When I'm not with her I wonder if she's really ok or has she developed another symptom or side effect. When I am with her I watch her and find myself wondering is she in pain right now? Is does this terrible cough mean that the crud is dying off and she's getting rid of it or is it just growing and keeping her from breathing and it's making all that mucous? I can't imagine if this is consuming my mind like this what it must be doing to her or any of you other patients. Any of you go through this and what did you do to get those thoughts to STOP? Maybe long enough to sleep or just get through the day?
  8. I did read your progress & realize that your cancer has returned. I am so very sorry & am returning your cyber hugs
  9. No, I don't mind you being frank. I really wish some more people would be. I find myself thinking that I only have a few months left with mom & then I will read a survivor's story and think that maybe I should be more optimistic. I am confused on that subject. Basically not sure which way to feel. I am thankful for every minute I get with her and especially when she is having her good days. It breaks my heart to watch her almost disintegrate in front of me. But, try not to show my concern. Another subject I am confused about. Do I play it off like no big deal when she starts one of her major coughing episodes where she is puking up mucous for 30 min, or do I run to her side and wash her face, hold her against me & tell her how very sorry I am that she is suffering so badly? I am trying not to smother her, but I don't want her to think that I don't think any of her pain is any big deal and she should just suck it up! As for my sisters, yes you are right, they are missing some quality times that they will never get back & if the battle is lost, they will be the ones with regrets. What angers me so very much is when I hear my mom say things like, " it's ok if they don't come because I'm use to being treated that way." REALLY! No mother should EVER have to accept that feeling of nonimportance. Especially by their own children! I do want to tell you that I am very sorry that your brothers treated you and your mom with the same regard & you are a very strong person to say you forgive them. I have not mastered the forgiveness thing. I pretty much cut people out of my life when they have hurt and disrespected me or my loved one to this degree. It's my safety shield and I am just too vulnerable to let myself get hurt repeatedly by people whom you are suppose to trust with your heart. I appear very strong and stable on the outside to most. Maybe even to the point of cold and unaffected. But, on the inside I crumble and fall apart easily. So, I can't afford to put my trust in those that will fail that trust repeatedly. Maybe I expect too much from those I allow inside my walls. But, it's my basic survival strategy and the only real way I feel I can function.
  10. Thank u for the offer of ur phone #. I have read several of ur posts & replies to others & realize you are a very informative veteran with this cancer ordeal in many aspects. So I do value your opinions. I will send you that private message as soon as I figure out how. Lol! I know that I am now in need of outside input that comes from experience & from an objective view point. It seems easy to see things from my own view point & it's also easy to get lost in my own mindset. I guess that's why I came to this web forum. I just needed some feedback on the things I was feeling. Because, we all need a reality check. I don't feel pity for myself & am not looking for any gold stars for the care I am offering to my mom. I just needed to know from others who have been through this ordeal if I was thinking selfishly or with paranoia. I only want what's best for my mom. Who, yes by the way is still undergoing treatment. The onc has her thinking that she will only have to have 6 chemo treatments & then possibly some maintenance afterwards. I don't have the heart to tell her that if she survives the six that it could be years of her battling this monster. I want her to keep the hope alive, but at the same time I don't want her to be devasted if she finds out the treatments have not been as successful as she had hoped. I'm not sure what to say to her and what not to say. I sometimes find myself thinking, " dummy- you shouldn't have said that. Now she thinks you're planning her demise."
  11. I am new to this caregiver role. I am already full of guilt and anger. Not toward my mom, who is the patient, but toward my sisters. Your post says that we should actually tell others what we need from them. I am sure it's mostly my paranoia, but I am terrified to leave my mom unattended. I just keep running all the horrible possibilities through my head and I live over 400 miles away. So, I have asked other family memebers to stay with her when I leave to go home to take care of my obligations there. I have a 14 yr old son and a husband who works away from home over night. We have established places for him to go when my husband and I are both away. However, lets face it I do still have obligations as a mother and despite my every effort, cannot find a magic spell to allow me to be in two places at once! My delimia is that when I do ask I get told, " yes, yes" and then they don't follow through as promised. I find out that they have not done as promised and left her there alone. I know none of those horrible things have occured... YET! I just don't know how I could ever forgive myself if she is alone and something does happen. I now find myself feeling like I can't trust the others to stay with her and my mom will not come home with me when I leave her house. She has always been a very independent woman and is having a very difficult time succumbing to the idea that she needs a caregiver. So, when I leave she tells people who are suppose to come- (who by the way are her other daughters or granddaughter) that she is fine alone. I have explained for them to expect her to do this to the others and also let them know why I feel the way I do and have asked them to not give in to her request to be alone. But, they do. Am I wrong to not allow my mom to decide if she wants someone there or am I justified in my fears. My thoughts are, " better safe than sorry". I just can't stay with her constantly. But, find myself feeling that I must be the only one who is going to do this for her!
  12. Thank you for sharing this. I cried reading your story and am so sorry for your pain. My mom was recently diagnosed with NSCLC stage IV. I have battled with this decision as to whether she will suvive long enough to have any quality after treatment. I know that sometimes the so called cure is worse than the disease. The Dr. told us that without treatment most only survive 3 months. That news really hit my mom hard. She's always been a survivor. She has survived the most horendous childhood. Her own mother and siblings basically disowned her years ago. Men have abused and taken advantage of her caring nature for most of her childhood and adult life. So, she now lives alone. I live 6 hrs away and go stay with her for her treatments and many days following. She has gone through 3 Chemo treatments and a target radiation treatment to the mets in her brain. The change in her appearance and overall daily abilities have decreased sagnificantly in these past two months. I can't imagine how much worse it's going to get. She has a horrible cough, her left hand shakes ferociously and her thought process is impaired as is her vision. The Dr won't give her a life expectancy based on her own case. He only would tell her what it would be without treatment. I have read the statistics and know that we'll be lucky for her to make it a year. But, I also know there are many survivors and knowing how much she's already survived in her life, I put nothing past her. Of course there is prayer and God's will. But, to see her deteriorate so fast in such a short time I wonder, " is treatment her best option?" Any thoughts out there?
  13. I am new to the site and to this fight. My mom was diagnosed with stage IV NSCLC. She has tumors in the brain, adrenal and mets to both lungs. Her largest tumor is over 9cm large in the lower rt lobe that extends to the mediastinum and onto the bronchial artery with no filling defects. She has just finished her third chemo treatment and I have taken on the role of primary caregiver. When she was diagnosed in early Oct of this year (2011) I immediately wanted her to come live with me and my family. But, she is a very independant woman and was still working. So, she had benefits and decided best if she stayed near by. She first thought she would continue to work. But, she quickly discovered how many Dr appts she would have and how completely fatigued she would be. So, has decided to take FMLA. But, is able to retain her insurance. She feels most comfortable in her own environment. Who can blame her, dont we all. However, I live in another state and so when it is time for her treatment I leave my son and husband to come stay with her and get her to her following appt's. My problem is this: I have other sisters. One lives only 30 min from my mom and the other lives near me. They do not get along and only are civil to each other in presence of my mom. I have not only had to care for my mom, but also mediate between the two of them. At first, I was accused of trying to "do it all" and acting as if I was her only saving grace. Now it's like they assume I can do it all and they don't have to because I am there. I have missed several important days in my own families lives in the past two months- birthdays, weddings, my own anniversary, holiday parties etc. I am not complaining and my husband and son are very supportive and do not complain or make me feel guilty either. I told my mom that none of those things were more important than her and she is my main priority. But, as of late I find myself being very disgusted with my sisters attitudes. I know everyone deals with these types of issues differently. But, they seem to be going on with their normal lives and almost refuse to sacrifice any family activity or even something like a HAIR appointment to spend the time with my mom. I took on the role I did because my mom is my best friend, has given me so much support my entire life and is definitely deserving of any sacrifice I make. I also do not have a full time job as do the others. But, am I wrong to think that they should want to spend as much time with mom as possible? When they are asked to stay with her, they don't show up at the time they agree to or sometimes not at all. I am absolutely terrified that mom will have a stroke or seizure when she is alone. She won't be able to call anyone and therefore suffer irreconcilable damage. One of my siblings is willing to stay and care for mom when it fits HER schedule instead of making her schedule fit mom. Then accuses me of keeping her out of the loop. I am so angry at them for not taking advantage of this time with mom and for not giving mom the same attention, love and care that she has always given everyone important in her life. I haven't said anything like this to them about their attitude in a direct manner because I do not know if I can do it in a tasteful manner. Am I wrong to feel this way and if yes or no how can I deal with all this anger?
×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.