jaydlott Posted June 25, 2004 Share Posted June 25, 2004 I guess I don't know how else to say what i'm feeling without using inapropriate language... May 4th my mom was diagnosed with stage 4 small cell lung cancer. It already masticised to her liver. I haven't been able to talk about my feelings because I seem to be the only one in the family responsible enough to take on all the responsibility and hold every power of attorney possible. All the way from disability, medicade, rubbing her back when she's vomiting from chemo to telling her she's still beautiful even though her hair is falling out. And to add insult to injury, I live 1500 miles away. I've been back home 4 times in the past 6 weeks to make sure her full week of chemo and radiation is handled and she has someone to hold her hand. I have 4 other brothers and sisters and i'm the baby. My mom is an incredible women who is fighting for her life and I thank God everyday that I can be here with her, but once again I have to leave in 2 days to go home to my husband and two small children. It's killing me to have to leave her because I know that everyone else seems to be "tired". No one knows tired until they have a golf ball size tumor growing on their lung that causes so much pain they can't eat or sleep. I love my siblings, but i'm so pissed that they're so close to her and yet their life is still so full of problems and alternative responsibilities. I can only cry to myself and my husband because my mom needs someone who she can rely on to be possitive. I pray for miracles everyday! Her tumor has decreased from the radiation and tomorrow is her last day of chemo. In two weeks she has more blood tests to see if the cancer has backed off. If I could give anything to my mom it would be more time to enjoy her life and do some things that she's always wanted to do. She has a very possitive attitude and is so greatful i'm here with her, but she's getting depressed because I have to leave again. I don't want to hear anymore negative comments about lung cancer. Everyone seems to think it's an automatic death sentence, I want to see the people who don't. I don't, the doctor didn't say call hospice, she said get your but into chemo and radation stat! I need to cry and I need to talk, but I can't to my family because they are either not excepting what is going on and i'm feeling alone with my emotions. Even if i'm talking to myself with this post, I do feel a bit better venting. Thank you to whoever listens. Julie Quote Link to comment Share on other sites More sharing options...
Jana_W Posted June 25, 2004 Share Posted June 25, 2004 Oh Julie, I could feel the heartache in your post. I am so, so, sorry for what you and your Mum are going through at the moment. It is a terrible thing you are going through. I know part of how you feel as my Mum was diagnosed with non small cell lung cancer (Stage IV) last July. You asked for some positive stories............well, my Mum is one of them. According to the statistics she had a very slim chance of being around even now, but she is still here, symptom free and ablebodied 100% one year later. Julie, please hold on to hope. There are many stories on this website of people surviving what many others consider the "automatic death sentence". It is not that. I do not understand why your siblings are not being more supportive though Julie. I feel it isn't fair that you have to be solely responsible for all of the care and support. It is a draining thing to do. I hope you are taking the time to look after yourself as well. Is there any one else who lives near your Mum that could help with things? A nurse who could come in and check on things, or suchlike? You are not alone with your emotions Julie. There are 1200 other people here who will always listen to you and be here for you, and who understand what you are feeling. And if we don't understand, we'll certainly try. You have just become part of one huge family, so you now have family to talk to. Please keep in touch. Let us know how you are, and how your Mum's results in a couple of weeks go. I will be thinking of you and sending you and your Mum all the positive vibes in the world. Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted June 25, 2004 Share Posted June 25, 2004 Julie Vent away. You have to get this pain out of you. Darn your sisters and brothers for not being more involved in your mom's care. I can imagine this is tearing you apart - trying to care for her and being needed by your family hundreds of miles away. As someone who has cancer, I can tell you that it means a great deal to have someone there for you. You are giving your mom a beautiful gift. But take some time, if you can, to care for yourself. Cat Quote Link to comment Share on other sites More sharing options...
Fall54 Posted June 25, 2004 Share Posted June 25, 2004 Daer Julie, Venting is positive as is crying. It helps to relieve so much stress. I can only imagine how hard this is for you as I did much the same for 5 months. My poor husband didnt see much of me. But he did support the fact that if I needed to go at any time... I go! I am sure yours is the same. Have you talked with your siblings about this ? Ask to meet with them all together and tell it like it is. Mom needs help and someone there to help her deal with the many treatments and just to talk to. Most of my family lives in NC and my brother that was sick lived in Maine but they came. The other brother I have in Maine was there as much as I but didnt need to leave his family to do so, but if he had to he would have I am sure. If your siblings are not there to help you, it will be their loss as I have not one regret because I was there anytime and maybe more often than I was needed but I always knew he wanted me there. You are your Mother's angel and you remember that. This is terribly draining I know but remember one thing God does not give us more than we can handle. I will be praying for you and that your siblings grab a hold and join in with Mom's care. God Bless You Julie Jane Quote Link to comment Share on other sites More sharing options...
ginnyde Posted June 25, 2004 Share Posted June 25, 2004 Julie, How very difficult this is for you, but you have found the right place to vent. Why is it that there always seems to be one child that ends up carrying the burden while the other siblings claim all sorts of excuses. Does your Mother live alone? Have you met with your brothers and sisters and tried to work out a plan? Do they know how serious this disease can be? Julie, welcome to the board no one wants to join. Keep us posted, ask us questions, just come here to vent. Quote Link to comment Share on other sites More sharing options...
cathy Posted June 25, 2004 Share Posted June 25, 2004 Oh Julie, I too feel your pain. Its so hard, I know. The good news is your moms tumor has DECREASED in size..Take one day at a time and taking a few deep breaths always helps..We are here for you, so you can vent all you want, we're use to it and we wont leave... Quote Link to comment Share on other sites More sharing options...
S. Jane Posted June 25, 2004 Share Posted June 25, 2004 Dear Julie, Your Mom is receiving a wonderful gift with the support you are able to give her. I believe you are right to be positive with your Mom. She is going through a rough time and needs as much encouragement as you can give. As far as your siblings are concerned, a priest gave me some wise advice one day - everyone has their own "grief map" and deals with hard times differently. Whether it be isolation, group support, fatigue, whether they jump right in to help, or stand back and do a bit, they all have their own way of viewing and reacting to this sickness. Accepting these differences in people is sometimes a great feat, but it can lessen your own anger if you know you are also following your own "map" and what you need and can do is the best thing for you and your Mom. Welcome to this wonderful group. Jane Quote Link to comment Share on other sites More sharing options...
pecola Posted June 25, 2004 Share Posted June 25, 2004 Julie, regarding your siblings...I went through the same thing when my mother had cancer. Initially, I was the only one doing anything to help, but at some point, I got exhausted and fed up and insisted that someone else help me. I finally just told them exactly what they needed to do. They both were scared, a little irresponsible, and squeamish, but I basically bullied them into helping. Did I enjoy it? No. But I think it made them step out of their comfort zone and be forced to do the right thing. They couldn't get past their own fears. I guess being the oldest made it easier for me to tell them what we needed from them. I'm sure it is harder when you are the youngest. I still ended up doing the vast majority of caretaking, but it did make my Mom feel better to see that all of her children were their for her in some capacity. With that said, I am now taking care of my mother-in-law who has end stage liver disease and none of her other family members will lift a finger to help. They're either too busy, too upset, etc. Nothing my husband or I have tried have made a diffference in their level of involvment, but it was worth a try. I'll just try now and apply Jane's very good advise with my husband's family. God Bless you and your mother. She is so very blessed to have you, Julie. Gina Quote Link to comment Share on other sites More sharing options...
gail Posted June 25, 2004 Share Posted June 25, 2004 Welcome to the party that no one wanted to go too. My suggestion, if you haven't already heard it, is get your hands on any of Bernie Siegel's books or tapes. He wrote Love, Medicine, and Miracles. I read it with my first cancer in 93, and it wasn't until that moment that I felt any peace. With the second cancer I got all the books on tape. To this day hearing his voice calms me. I recommend the tapes more than the books. I actually got them from the library and copied them. I had the opportunity to see him in person and just cried. It is a very difficult time. gail Quote Link to comment Share on other sites More sharing options...
Margaret Posted June 25, 2004 Share Posted June 25, 2004 Julie, What a very difficult time for you and how wonderful that you can stay positive with and for your Mom. I offer prayers for strength to deal with each day as it comes. I see that you live in my "neighborhood" and, although I know your time is more than filled, maybe we could meet for coffee some time...I might be about your Mom's age and maybe can relate to some of her feelings. I am an only child and, therefore, have the responsibility of my 90 year old mother, who I had to place in Eldercare after her broken hip last a year ago. She doesn't have cancer but does have a great many health challenges. Welcome to this Board...you'll never be alone in this, because we care. Margaret Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted June 25, 2004 Share Posted June 25, 2004 Julie, I will listen to everything you need to vent. So will just about everyon else here. We care; we sympathize. I'm sorry you wind up with the burden alone, you must be exhausted doing this coast to coast!. I can't say I've had to deal with an ill parent as yet, God bless them. Just my own illness, and they helped me. I hope you find comfort and solace in the support and warmth here. Prayers for your family and your mother... XOXOXOXO MaryAnn Quote Link to comment Share on other sites More sharing options...
Kris Posted June 25, 2004 Share Posted June 25, 2004 I've been there....right there where you are...in that family situation. I just couldn't believe that my siblings didn't want to or couldn't find the time to give to my Dad that I was giving to him. I still hold the anger towards them although I know it isn't a good thing. So, I can completely relate to what you are saying. The only advice I can give is for YOU to do all that you can do and be there in any and every way possible that you can. For now, don't give the rest of the family a second thought. They are not the important ones right now. The focus is your Mom. And if you do everything in your power to help her, be with her, take care of her and be there for her (in whatever way you can manage) then you've done a great job! And it sounds like you already are. As caregivers, we sometimes forget to cut ourselves some slack. Try to take care of YOU too. That's also important. You can't be helpful to your Mom if you aren't taking care of yourself. Kris Quote Link to comment Share on other sites More sharing options...
jaydlott Posted June 25, 2004 Author Share Posted June 25, 2004 I have to tell you all that don't think i've ever met a more caring bunch of people in my life. I never expected such a warm welcome that it brings tears to my eyes. Thank you for all your prayers and advice. I am trying to see all the positive things that my siblings have done. I do have a brother who lives in New mexico that has helped financially with my mom. He has been wonderful, but like me, he is so far away. The ones that are close are the ones that are driving me nuts. My sister has taken my mom to a few appointments, but she is dealing with her own crisis that the whole situation is hard for her. I want to be able to be comfortable when I leave knowing she is cared for. My aunt lives close by and comes over to cook and drives her to radiation, but she's 72 years old and can't get around very well. We had our last day of chemo today and God bless my mom, she's prepared to know that she'll probably need more and I told her I would be back to help out. You never realize how many people this disease effects until your own family is effected. Now it's' just a waiting game to see how the treatment helped. My husband is incredible. His father passed away two years ago from lung cancer and he flew to michigan for 4 weeks, so now he's so understanding on my needing to be here with my mom. For everyone here that has lost someone to cancer or who is fighting cancer, God bless you and this website. Your courage and advice helps more than you could ever imagine. Julie Quote Link to comment Share on other sites More sharing options...
jaydlott Posted June 25, 2004 Author Share Posted June 25, 2004 I'm sorry Margaret, I got to typing... As my schedule tones down a bit i'd love to have coffee some time. It's nice to know there is a support system out there for us. Best Julie Quote Link to comment Share on other sites More sharing options...
karen335 Posted June 26, 2004 Share Posted June 26, 2004 Julie, I would like to offer prayers for you and your mom. I wish I could do more. I also live in So. California, Corona. If you and Margaret get together, I would love to meet you also. I have met Margaret, she is such a wonderful and lovely lady. Hope all works out with your siblings. Please keep posting and let us know how things are going. We are here to help if we can. Many prayers... God Bless, Karen Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted June 26, 2004 Share Posted June 26, 2004 Dear Jay, I'm glad your mother is done with the chemo and I hope she starts to feel better. You need a little rest too. Prayers for you and your Mom! here's hoping the chemo helps a lot! S haron Quote Link to comment Share on other sites More sharing options...
jamie Posted June 26, 2004 Share Posted June 26, 2004 Julie, Your doing the BEST job with your Mom. Keep it up, cause it sounds like she needs someone like you around... Best wishes and health to both her and you!!! Jamie Quote Link to comment Share on other sites More sharing options...
jessiejo Posted June 26, 2004 Share Posted June 26, 2004 Julie, I understand how you feel and although it's hard for you to understand the behavior of your siblings, keep in mind that what you are doing for your mom is priceless. Too bad your siblings will never be able to have this time with your mom. I'll keep you and your mom in my prayers. Sincerely Jessie Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 26, 2004 Share Posted June 26, 2004 Julie, you are being a great daughter to your mom, and the distance and your own family limit what you can do. Does your mom belong to a church or other organization that can be called upon to help? It is a large task being the caregiver, and we need all the help we can get. Hang in there. Don Quote Link to comment Share on other sites More sharing options...
Andrea Posted June 27, 2004 Share Posted June 27, 2004 Julie, How hard it must be to be so far away. I used to live that far until my parents followed me out to CA. It is rough. There is another girl on this website, Laurie, who also lives in San Diego and her parents are back east and her mom is battling LC. Please post and vent anytime you want and please know that there are great people here for support. The "Family members" forum is a wonderful place to vent, a lot of us vent their and share fears about our loved ones. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted June 28, 2004 Share Posted June 28, 2004 Julie, Some of the things I am continuously learning: *Life is not fair - and "family life" is not fair. *People may share the same parents, but turn out very differently. *Some of our relatives are people we would not associate with if given a choice. *Siblings have different priorities. That being said, try not to pay attention to what the others are or aren't doing. If you are the one that your mother relies on to get things done, continue to be that person for her. If given an opportunity, "manage" the rest of the family: try to set up "tasks" for each of those close to her to accomplish, small pieces of the big picture...it may work, it may not - but you'll have given it your best in getting the others involved. Basically, responsibility is something that is only given to those that accept it. A person that is irresponsible is that way because they CHOOSE to not ACCEPT responsibility. All in all, it's a damn good thing your mother has you! Enjoy her while she's yours alone and don't worry about the other children. She may speak highly of them leaving you feeling...well, kinda "pissy" is how I'd describe it, but she KNOWS that you are the one she can rely on. This is something HUGE, having someone you can depend on... Take care, Becky PS Welcome to the board. Quote Link to comment Share on other sites More sharing options...
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